The Mom & Me Journals dot Net

Although I didn't think I'd find myself...

2010-07-28T13:24:00.000-07:00

...writing anymore posts at this location, since I've moved everything to other journal sections and haven't, actually, done much writing since my mother died, I just uploaded a new transcript to the podcasts listed over on the right in the links section: The transcript for the "Second Interview". There's a link to it, if you're curious. I'm not sure what is possessing me to finally finish transcribing the interviews and, as well, the process takes quite a bit of time so it's possible that I won't be adding transcripts hotly and heavily, but I've taken on the project, now, and expect to continue over the next few to several weeks.
    Does it bother me to listen to the interviews and hear my dead mother's voice? Not at all. I hear her voice all the time inside my head. Does it make me miss her more? I don't think so. I continue to miss her "to the umpteenth degree", as she might have said, and expect this to continue through the rest of my life. I'm just living with it, and, a year and a half after her death, a bit (not a huge amount) better than I did earlier on. I enjoy transcribing the interviews, though. I love hearing her voice and remembering all aspects of her presence. Yes, I continue to wish she was still here, beyond reason, of course, or that I was "there", where ever she is. I continue to feel slammed against the wall by the fact of death in a way I'd not experienced before her death. I used to think/feel that death was "right", or, at least, was able to accept it in the scheme of things. Now? Well, let me just say that I'll be glad when my life is over so that whatever happened to her will finally happen to me, even if that "whatever" is oblivion. Yes, I've "made new friends", gotten closer to others, but I've also, finally, faced the cruelty innate in the death of life of losing someone and experiencing a hole from that loss that will never be filled and will never not be there. This is the first time I've not adjusted to the consequences in my life of the death of others. It's okay with me if I never do, in part because, as I come into contact with others I see the hollows in their souls, now. I never did, before; wasn't even aware that soul-hollows existed. Somehow, it seems kinder that I can see and relate to those hollows, now.
    I'll post again each time I add a new transcript, of all which will be added according to the dates they were made.
    Later.

For those few of you...

2010-06-12T14:53:00.003-07:00

...who may be connected by feed to this journal but not the "new, improved" version where I'm actually posting, now, after a significantly delay I have posted, again, "...over here, over there,", you know. Here's the link.

I'm continuing this journal...

2010-04-30T11:15:00.004-07:00

...in a new edition, After the Mom & Me Journals dot Net. I've just published my first post over there, an apologia for that section of the journals. Chances are, I won't be publishing anymore posts here.
Just wanted you to know.
Probably (but, you never know) not later, at least not here, but definitely later there.

Okay, so here's the scoop.

2010-04-29T23:03:00.001-07:00

    I know that a few of my really loyal readers may check back here on occasion to see if I'm still alive, and, yes, I am. It's hard, really, to talk about my situation, right now. I'm very ambivalent about my life, at this point. So, I'm not going to talk about that. What I am going to talk about is this:
BLOGGER IS TURNING OFF FTP PUBLISHING ON MAY 1ST, 2010
    Some of you who host blogs on Blogger probably already know this. What it means is that unless I go through their ridiculous process of redirection to their custom domain service, I will not be able to publish under my domain name anymore. I've been giving this a lot of thought ever since Blogger's announcement in February. I'd already decided not to avail myself of their custom domain service, but I wasn't sure how I was going to handle everything, otherwise. Tonight, I finally got the courage to migrate one of my blogs over to their blogspot server, which I used once before. The migration tool doesn't actually do what it promises, which is to ensure that when you click a link in the newly minted blogspot blog that points to another area within the same blog but carries the old url, it will easily and efficiently redirect these links. It does redirect them, but not to the link, rather to the index page. However, one thing I realized is that while FTP publishing may be turned off on May 1st, Blogger has no way of deleting what already exists on my domain server. Thus, I am going to migrate my blogs to blogspot urls the old fashioned way (which actually takes scads less time), not worry about links, and all the old material that was published and linked around before the migration will still be available at its old urls.
    I know it must seem that I've given up the ghost on this journal, and for some sections I have. I still have strong urges to publish about particular aspects of aging and caregiving, though, even though I've not been doing this online, just writing posts in my head. I plan to get going again. I will likely, in fact, start a new after-caregiving journal section to contain these posts. I'll make sure there is a redirection post when I do this.
    Obviously, many of the sections of this journal closed themselves off because they are finite in time. The only ones that I may update are In Sane Grief, Essaying the Situation, Movies, Mom & Me and, maybe, Caring. About Food. In the meantime, this post is notification that you can now find updates to this journal at http://.blogspot.com/. Once again, if I decide to continue in a new edition of this journal, I'll include a redirection link here...well, at the blogspot version of this which is: http://themomandmejournals.blogspot.com. Otherwise, all links should continue to operate, since the FTPed version of this journal will continue to exist on my domain server. I've also included "final" posts at each of the other sections of these journals, directing readers to the new blogspot locations.
    Maybe we'll be communicating again soon! Might be fun!
    Later, I think.

On this date and at this time last year...

2009-12-08T08:55:00.002-07:00

...my mother's body was leaving our home for the last time.
    It's been a year.
    Funny, but it wasn't my possible reaction to today that's been capturing my anticipation for the last few months. It was my reaction to yesterday, December 7th, the last, most confusing and most surprising 24 hours of my mother's life. Considering how those hours went down, last year, and how I've been vividly reliving, in memory, the parallel six months of last year, I was not looking forward to yesterday. Our first winter storm of the year started early in the morning yesterday, though, and continued well into last night. If you're a regular reader of these journals, you won't be surprised to learn that I was ecstatic. The storm began as driving rain. Of course, I headed out in it to do errands. Impossible for me not to get right out in a storm. Once the snow started, I was home, snuggling with my cats and watching this area turn into its usual snow storm Christmas card ambiance. Wonderful! It didn't stop me thinking about last year, but the storm overlaid all my thoughts with snow-storm-elation, so I had a good day.
    At 2325 last night, just about the time, last year, when I began to wonder if my mother and I were conducting her death watch, the power went out and stayed out until 0805 this morning (minus a few teasing surges every couple of hours). Now, this is something you don't know about me: I LOVE emergency living situations. I was introduced to them, long term, on Guam when I was of elementary school age. We lived through Typhoon Karen in 1962. Yes, (now called) Super Typhoon Karen was so significant that Google lists 247,000 pages that mention it. Wikipedia has an article on it. The tropical storm name "Karen" was retired for the Pacific. I looked through a smattering of first-listed articles to try to determine how long we went without power and running water. No luck. My memory tells me it was at least a few weeks. I can tell you that, for us girls, life was exhilarating during that time, during and after the storm. Our home, which was a sort of pseudo quonset, without the round tunnel construction but made out of corrugated metal and held to the ground with guy wires, sustained some damage but not enough to render it unlivable. We had a constant cook-and-water-boiling fire outside during the day into the evening. My father would pick up drums of water from one of the bases for us. In the area we lived, called "Old NCS", although no longer owned by the military, all houses that weren't quonsets were destroyed, as well as a club, a community church and a weather station near our home; all of them were standard concrete structures. During the days we kids would happily plunder the remains of the destruction. In the evenings we'd prepare and eat dinner al fresco and continue to take our usual evening walks around the area with our intrepid dachshund, Fritz. I loved the experience. I seem to remember that my sisters did, too. I doubt that my parents relished it but I don't remember them ever complaining. You just did what you had to and went on. After that experience, I tend to think I can live through anything.
    So, last night was nothing, except that it distracted me from obsessing about Mom's last night on earth. That was nice. Today, with the sun flooding in the front windows, the house warming nicely (it got pretty cold, last night, without power), I'm imagining that the storm was perfectly timed...maybe even "engineered from beyond" to get me through the last 36 hours or so without undue sadness.
    Tomorrow, finally (I've postponed the trip twice, once by choice, once by life fiat), assuming I can dig my driveway out before then, I'll be heading down to Chandler for a visit with my nephew and maybe a few more members of that family. I'm looking forward to it. It comes at a good time.
    I decided not to spend Thanksgiving day or Christmas day with family. Once I'd made plans, I began to feel that, this year especially, I wanted to reinstitute my usual habit of spending the holidays alone, which I haven't done for 15 years. I've been looking forward to it. Thanksgiving went well. I expect Christmas to go well, too. I'm still visiting family, just not right on the holidays.
    I haven't yet put up my favorite fiber-optic tree. I expect to erect it once I return from Chandler on Thursday. I'm looking forward to that, too. I haven't decided whether to decorate it. Mostly, I want to have it throbbing and glowing in the living room in the dark. It has always been one of my favorite holiday displays.
    It's been a year. It doesn't seem like that long. The worst of the remembering is over. In retrospect, it hasn't been that bad...emotional but not devastating.
    Think I'll go out and survey the snow; get an idea of how much shoveling I might have to do to make sure I can get out of my driveway tomorrow.
    Later.

Palliative Care Grand Rounds 1.11 is up!

2009-12-03T14:11:00.002-07:00

    Great edition this month, lots of new stuff and new sites. The presentation is interesting and funny, too.
    Yes, it's true (she says with a touch of shame) I'm mentioning it because I'm in it. As you know, I haven't mentioned it, or been in it, for quite awhile, but I'm coming back and this edition is a wonderful place to restart, regardless of my presence in it. The presentation, itself, is interesting and personal to Jerry, the host on his blog Death Club for Cuties.
    Go. Now.
    Later.

Over the last two weeks...

2009-11-27T12:38:00.002-07:00

...I've gotten a couple of comments from a blogger named karen who writes about caring for her mother at home at Mom, Me and Alzheimer's. Today, (as I usually do, if the commenter has a blog) I clicked into her blog to orient myself. What a surprise! After reading a few recent posts I decided to read from the beginning of her archive up to her most recent post.
In one of her more recent posts she admits, "I am not a writer." But, you know, I am of the opinion that if you write with the intention of expressing yourself you're a writer, and, anyway, she writes in the short, succinct, meticulous, often harried, everyday conversational language of the home caregiver to An Ancient One with Alzheimer's, which makes her blog a delight to read for several reasons:

It is chock full of all kinds of cobbled-together hints and suggestions to make caregiving easier and/or more comfortable for her mother and her. A lot of them have to do with food, drink and her mother's constantly changing nutritional peculiarities and challenges but there are loads of others, as well. The suggestions follow her day to day trials and what she's had to figure out in order to best yet another of the daily challenges.
She's been taking care of her mother at home for well over two years. The blog begins a bit after discovering that her mother is eligible for Hospice care, which she states is not "EOL" (End of Life) hospice care. She talks a bit about how she could have used it and wishes she'd been told about it much sooner. Otherwise, in post after post she gives a clear, quotidian picture of what it is like to deal with hospice care at home.
She follows many bloggers and other types of sites, several of which feature Alzheimer's and caregiving, and often posts about new bloggers she's found. She's also generous in passing on suggestions she's found valuable. Thus, her site is a good resource.
She talks about home life in a realistic way, including insights into dynamics with extended family, things she does besides caregiving even though caregiving is clearly her primary and overwhelming concern and things she used to love to do and wishes she could do more.
The family is financially strapped and she is forthright and detailed about what it is like to negotiate the extraordinary expense of caring for an elder with Alzheimer's. She pulls absolutely no punches about equipment she wishes she could afford...then, talks about how she devises in home solutions that substitute for this equipment. She talks about price and value the way you would talk with your next door neighbor.
She loves her mom and intimately describes her and her mom's interrelationship and how Alzheimer's affects it. She also sneaks in bits about things her mother used to do. It is easy to see that she is taking care of a formidable woman, appreciates this about her, hates what Alzheimer's is doing to her mom but loves the woman to whom this is happening.
She is frank about her experiences with institutional care in regard to her mother and continues to use it, out of necessity.

    Her mother has recently turned another corner in the inexorable progression of Alzheimer's. As I read this, in light of the rest of her posts, I found it impossible not to reflect on how much "easier" it is to take care of someone with the type of vascular dementia my mother had (even with all her other chronic health concerns) than it is to care for someone with Alzheimer's dementia. And, yet, karen continues with courage, sadness, hope and despair, exhibiting much more energy than she believes she has, which is a chronic condition of being an in-home caregiver: You NEVER believe you have enough energy but it is amazing what you get done considering the lack of energy you think you're exhibiting.
    I haven't, in a couple of years, spent much time looking for caregiving blogs, let alone reading them, for obvious reasons. I'm glad, though, this woman crossed my path. One of the things I'd been mourning is that almost all the caregiving blogs I frequented have become frozen in time at the death of the care recipient, which is understandable. But, people, caregiving continues, in even greater numbers than before. I've decided to add karen to the links list at the right and reorganize my Honorable Alzheimer's Blogs list into "Static" (have stopped since the death of the care recipient) and "Current" (continue, even since the death of the care recipient, in some cases) blogs, for obvious reasons. Not that I believe the "Static" blogs are any less valuable but the fact that the care recipient has died gives the blog a different tone, I think. karen's blog will be the first in the list of "Current" blogs, in honor of her blog giving me the idea.
    karen, thanks for blogging. You have no idea how valuable is your "I-am-not-a-writer" contribution to the literature of caregiving. And, by the way, you most certainly are a writer, one that I like and will continue to follow!

Yet another "change" registered...

2009-11-22T10:40:00.002-07:00

...this morning at the Official "More Changes" Post. The link will take you directly to the amendment. This one is about garbage, an important change that provoked MUCH further thought and research. It's so significant a change that I can't imagine how I could have forgotten it, except that it's such a quotidian concern that I think about it at least a few times a day when I throw something away and realize how little I am throwing away, now, so I no longer find considering it startling. The highlight of the post is information about the dilemma of adult disposable incontinence products and links to further opinions and resources.

It's about Ethics, Isn't It?

2009-11-21T09:19:00.004-07:00

    I've been "away" from following Palliative Care Grand Rounds (the link is to its latest edition which is excellent, as usual) for a long time; just as I've been "away" from just about everything with which I was in touch prior to my mother's death. Lately, though, I've been stumbling back, which, I guess, is obvious in my sudden, recent interest in posting again. As I perused this month's edition of PCGR I was introduced to the website Death Club for Cuties: Caring for patients and families at the end of life. The post featured in this month's PCGR was an abstract for a presentation about, to quote: "Blogging as a tool for professional development, and for enhancing communication among palliative/end of life (EOL) caregivers." Interesting subject. Once I finished that post, though, I was drawn to this blogger's most recent, linked here: My First E(nd of) L(ife) N(ursing) E(ducation C(onsortium) Presentation. Don't let the dry title discourage you. The post is a presentation he gave to the Consortium about ethics, particularly medical practice ethics at the End of Life (often abbreviated "EOL"). I recommend it to all involved in caregiving for the Ancient and Infirm. Aside from this, though, one part of the post resonated with me as I continue in the wake of watching Tokyo Story, the movie featured in my immediately previous post (to which the movie title, back there, is linked).
    Scuttle down in the Death Club for Cuties post just past the graphic of the cover of the book "The Long Winded Lady" by Maeve Brennan. Read the quote lifted from one of her columns (cited in the post). Notice the phrase that Jerry, the blogger who wrote the post, highlights: the impulse toward good involves choice, and is complicated, and the impulse toward bad is hideously simple and easy.
    It's true that, in the post about the movie, I leaned toward moral relativism, except at the end. I often do that, on my ethical way to making a moral decision...I think it's one of the standard landmarks for people who make the effort to think their way through to a decision about what is the right action to take. When I read the above Brennan phrase, though, I realized that Ozu was subtly making the same point in his movie. The decisions made by sons Koichi and Keiso and daughter Shige were the easy choices. In one case, Koichi's decision to put off a city tour because he encountered a Sunday emergency involving one of his patients and, as well, to disallow his wife and sons from going ahead with the tour because no one would be left at home, seems like "the right" decision, especially since Noriko, the daughter-in-law, rescues the tour. It also seems like the "hard" thing to do. Later, Shige's and Koichi's combined decision to pack their parents off to the Atami spa and resort seems clearly wrong, the "easy" thing to do. The catch, though, is that in both cases there are alternatives that aren't considered and alternatives that are connected to decisions made long ago, sometimes by agents only peripheral to the lives of the adult children and of which I was only made aware in the commentary, which gives us this snippet about Japanese life at the time: Koichi is clearly a physician of mediocre status as evidenced by his office being in his home, not being able to afford a nurse and not being in league with other physicians to whom he can refer calls. In addition, there is the obviously long standing decision on the part of all the children, including the "virtuous" daughter-in-law, that it has always been easier not to closely attend to the lives of their parents once they each fledged the nest.
    I can't say that I agree that the easy action is always the wrong action. As one develops as a caregiver to an Ancient and/or Infirm One, if one has even an ounce of compassion for one's care recipient, "easy" comes to have multiple meanings. A good case in point is when I decided to allow my mother to be entered into five days of respite care while I prepared for her return home from the hospital after an especially debilitating bout of pneumonia which led to her lung cancer diagnosis. I thought this would make reassembling the house and recuperating, a little, from having literally lived at the hospital while she was there "easier". Even though I visited her frequently over those five days, more frequently than I had intended, my absence in her life was so overwhelming for her that it became debatable, in retrospect, whether putting her in respite care had been a good idea, for her or me. Shortly on its heels, though, another situation cropped up in which it was clear that she needed intense, short term physical therapy in order to regain enough of the strength she lost during her pneumonia (it was judged by both a doctor and a physical therapist that she was capable of regaining this strength) to negotiate being at home. For a variety of reasons having to do with Medicare and hospice regulations, we had to sign her off hospice for a bit and sign her into a Skilled Nursing Facility in order to accomplish this. This episode wasn't pleasant, either, but it was the "right" thing to do, it worked...and it was "hard", on both my mother and me. The "easy" respite episode, though, became "hard" almost immediately after it began. This clears up nothing about which decision was "right"...nor does it take into account the subsequent decisions, in response to her reaction to not being at home, that I made about how to tend to my mother while she was in respite care, all of which made the experience "harder" on me but "easier" on her.
    Once someone becomes aware that an Ancient and/or Infirm One needs extra companionship and care, it is impossible to avoid the daily intrusion of ethical dilemmas, all of which, from the very first dilemma regarding who should offer this care, are sticklers. They all involve the consideration of what you, as a caregiver or onlooker, can live with and what it takes to live with your decision. I think a handy rule of thumb is this: If living with your decision involves blocking out anything involving the one you know who needs care, like, for instance, blocking out the loneliness your Ancient or Infirm One experiences because you are not particularly present in her life, blocking out the possibility of medical mistakes being made because you've left medical advocation up to the medical professionals without question, blocking out the day-to-day life of your Ancient One because there doesn't seem to be a way to incorporate it into your own life, well, that's probably the point at which you need to question the decision you've made. I know, this doesn't make it easier. After all, what about the parts of your life that you have to block out on behalf of the needs of your Ancient or Infirm One?
    This is where the post gets really interesting. Search the word "compassion " (with a space after it) in the article. It will bring you to the following quote Jerry lifted from "Human Relationships at the End of Life", published in the "Journal of Hospice and Palliative Nursing":

While it may sound simple to suggest that compassion serve as the underlying moral foundation to guide our response to suffering, true compassion actually requires great courage. It involves being open and available to suffer with, instead of recoiling from the suffering experience.

Ultimately, Tokyo Story explores the lack of compassion and how "hideously easy", to quote Maeve Brennan, it is to avoid the compassionate response; how easy it is to think you're being compassionate when you're not; how easy it is to think you will always be driven by compassionate urges when life gets complicated; how easy it is to become so confused by life's complications that trying to decide on a compassionate response is quite like feeling around in the dark in an unfamiliar house for a light switch.
We all wish it was easier. But it's not. Read the post. Bookmark it. I think it's always a good idea to remind oneself, every once in awhile, to think ethically and how much compassion figures into making an ethical decision. It's "easy" to neglect to do this...because it's so damned "hard".

Yesterday I watched a movie that I now consider...

2009-11-20T09:12:00.002-07:00

...the best and most extraordinary cinema revelation about relationships in families that include Ancient Ones: Tokyo Story. I stumbled across it because I have an affection for Japanese cinema and Netflix' cyberbot, noticing this, recommended the movie. The brief description was intriguing: "Director Yasujiro Ozu focuses on an elderly couple in post-World War II Japan who travel to Tokyo to visit their children. The parents are received coldly by their two children; the only one who is happy to see them is their widowed daughter-in-law. The children shuttle their aging parents off to a health spa in an attempt to get them out of the way, a decision that could come back to haunt them."
    Yesterday I discovered that the movie is so much more than the abbreviated, inaccurate description. I was so touched by the movie that, for the first time since I've been watching DVD productions of movies, I turned on the commentary while watching the movie a second time, partly because it seemed to me that the English subtitles were unfair to many of the subtleties inherent in the Japanese conversation and I wanted to know more. Not only was I right about that and satisfied with the further information the commentary provided, I discovered that Roger Ebert's review, to which I've linked the title of the movie above, captures the intent and tone of the movie much better than anything I've read about it since my viewing, despite a few inaccuracies: The camera, for instance, actually moves twice in the movie, rather than once, both movements being important and startling; and the entire family does not attend the tour bus outing...only the parents and the widowed daughter-in-law. A salient point is made, in fact, by the absence of the other family members on this tour.
    I learned through the commentary that Ozu, the conceptualist and director of this movie, considered Tokyo Story his "most melodramatic movie" within a body of work that is decidedly not melodramatic. The melodrama is subtle, though, and excused during the final scenes of the movie as a reflection of the melodrama individuals tend to use as a daily filter while considering events of the day, or previous months or years. At the end of this movie there are no good nor bad characters, no one receives a narrative comeuppance and the character we've come to view as the most virtuous, Noriko, the widowed daughter-in-law, reveals her understanding that she considers herself, for good reason, no better than the character we've come to view as the least virtuous, Shige. The character who is most disturbed by the actions of her siblings, the youngest daughter Kyoko, an unmarried schoolteacher living with her parents, is shown to be harboring the fierce judgment of youth, a judgment that is simultaneously defended and criticized by Noriko. The narrative, we come to understand, is fairly inevitable. Much of what we decide or refuse to feel and do in regard to not only our relationships with our Ancient Ones but with our peers and our Young Ones exists within the complicated and often confounding interweave that is our lives. Maybe we can do better but maybe we can't.
    The movie was released in 1953. Aspects of Japan's recovery from WWII and the effect of this recovery on traditional culture are primary but, viewed against the backdrop of today's world, are beside the point. Everything about contemporary life that renders extended family relationships, as well as the safety net we imagine they used to offer, challenging, if not downright impossible, is in this movie: Geographical distance; the political desires of a nation versus the social desires of a family; workplace status and demands versus family status and demands; traditional beliefs versus reality; accelerated change and how it affects not only what we are able to do with our lives but our desires and dreams.
    Despite this, the movie is far from depressing or dictatorial. As I watched I was reminded of the times, while being my mother's companion, when I so badly needed my own space that I would go on "vacation", even while remaining her companion and caregiver, one of which is discussed here. It reminded me of the bubbles of family resentment that would occasionally rise to the surface and cause me to confront issues that I knew could be resolved or settle myself with my situation in a psuedo-Zen fashion that allowed me to, yet again, accept the situation, even be glad for it. It reminded me of the times when, for a variety of reasons, I felt inadequate to the tasks of being my mother's companion and caregiver and of the strategies I used to cope my way out of my feelings of inadequacy. Most importantly, it reminded me of the many, many times I attempted to question my involvement in my mother's life from her point of view and repeatedly rededicated myself to the idea that the situation we created was the best for her...and me. The movie brought to mind two important questions that remain unanswered to my satisfaction: Was I ever right? Was I ever wrong?
    We tell ourselves so many stories about family and community: Legends about extended families and watchful communities in which everyone was included; Interpretations of modern families and seemingly dissociative communities in which everyone exists on some sort of misfitting outskirt. It is always possible to modify our behavior, for good or ill, toward family and community by scrutinizing what we think of as the reality of our lives against what we "remember" and what we ultimately want for ourselves, our family and our community. Whether it is possible to ever truly know whether we're doing "right" or "wrong", though, Tokyo Story tells us, remains a mystery. Is the loneliness that seems to plague the lives of the parents and the daughter-in-law in Tokyo Story "bad" and capable of being adequately addressed? If so, how long will this address remain viable within this family as it grows and changes? Is the attention paid to the parents by the single daughter and the widowed daughter-in-law "good" and assured in the future? It depends...it all depends...on what tomorrow brings, then that depends on the next day and the next, and yet we can never be aware of anything except what has happened and what is happening now. Even that awareness is so colored by where we are standing at any particular moment that, well, it all depends...
    Of course, attention to the lives and needs of all family members is desirable, just as our well-known proverbs tell us it is, says Tokyo Story. And, yet, watching and thinking about the movie reminds me that, well, water finds its own level. We construct ways to collect or direct it to our purposes, purposes we consider important, even necessary, to life. Sometimes we are able to accomplish control of water for decades, centuries, even millennia. Our control of water alters our lives, as does our dependence on our control. Eventually, though, water flows where it will and we are bound to be caught up in it, either floating with it or struggling against it. Which is "right"? Tokyo Story tells us that we may not ever know for sure, but it's never a bad idea to examine, speculate, accept or reject and try, again; it's natural...it's life.
    If you have an interest in and/or appreciation for movies about families that include elders, watch Tokyo Story. At least twice. The first time, if you are or have been a caregiver, an elder family member or have/had a caregiver within the family, you'll probably flinch from recognition of yourself in one of the archetypes. The second time, though, you are liable to consider yourself more kindly...and, as yet another proverb states, if you are kind to yourself you are much more likely to be kind to others.

With much thanks to The Good Death,...

2009-11-18T10:47:00.006-07:00

... an online journal about all things death oriented (no, it's not at all morbid, in our casual understanding of the term) and its author, Jessica Knapp, I ran across an interesting document mentioned in one of her posts. It's a type of Living Will that goes beyond the typical in a variety of important ways. To quote the website Aging With Dignity, on which the Five Wishes Advance Directive is featured (along with a variety of other "aging with dignity" issues), it allows the signer to "use your words to express your wishes, communicating in a language that you understand". Aside from the usual Living Will concerns, which it allows the signer to address much more specifically than the typical Living Will, it also deals with "how you want people to treat you" and "what you want loved ones to know". My curiosity was piqued, so I clicked into the Five Wishes Preview featured on the site and discovered more than a preview. It appears that the entire structure and wording of the Five Wishes document is included in the pdf file (which can be downloaded to your hard drive by simply saving it). There is also a link on this site which states that they have reprinted the entire Five Wishes document "with permission". The reprinting matches the "Preview" in every respect. This site also cautions: "To use this as a legal document in those states that accept it, ...you MUST send for the paper version (only $5)." I doubt this. I rather suspect that this is a tip of the hat to the profit motive.
    Both files include instructions on how to legalize the document, a thumbnail history of the document's origin and specific state instructions, where applicable, regarding additional legal requirements. It also advises how to, for instance, pick someone as your "health care agent". The latter contains some surprising but, in retrospect, wise suggestions regarding who you should not appoint to this position.
    I especially like the headings in some of the wishes. Wish 2, for instance, includes the headings: "What You Should Keep In Mind As My Caregiver" and "What Life Support Means To Me". The section on what specific types of treatment the signer wishes as death approaches is divided into four parts including one entitled "In Another Condition In Which I Do Not Want To Be Kept Alive". Most provocative, though, are some of the requests under the last three wishes, all of which describe in brief yet startling detail the type of treatment one would like as one approaches death (i.e., "I wish to be massaged with warm oils..." and "I wish to have my favorite music played..." in Wish 3). "My Wish For What I Want My Loved Ones to Know", #5, includes general requests for and thoughts of forgiveness in addition to the general attitudes and demeanor the dying one wishes their friends and relatives to assume as they approach and, afterwards, come to grips with the loss of the dying one.
    If you're a regular reader, it shouldn't surprise you that I am brimming with musings about some of the aspects of the Five Wishes document.

As I read the standard (to the Five Wishes document) list of stipulations under the heading "My Wish For How Comfortable I Want To Be" I am reminded of the discussion my mother and I had about how much pain and palliative medicine she would want during the active dying phase. This was an important discussion for us. Although I was caught off guard by her actual active death phase and was never sure that she was actively dying, especially since she was insistent that she wasn't as long as she was able to respond to my questions about her state, I am sure that she was neither over nor under medicated from her point of view. Her awareness, as well, that something "different" was happening combined with her lack of distress over this difference allowed me to know, in retrospect, that, despite her insistence that she wasn't dying and would never die, she was aware of the experience and its uniqueness. I can't say for certain, but from my knowledge of her, I'm guessing that her awareness was to her taste, even when the experience, itself, appeared, to me, to be surprising, even, maybe, unpleasantly so.
Nonetheless, Wish Three is a much needed primer on how to physically and temperamentally attend to a dying one. It is designed to encourage the dying one's attendants to place themselves, physically and emotionally, in the place of the dying one and consider what would be comfortable to a person in such a state even if that person is unable to communicate their needs.
I can easily and authoritatively imagine what my mother's reaction would have been to the requests, in the same section, involving things like music, readings, prayers, warm oil massages, etc. I can almost hear her say, "Well, if we're doing these things and I happen to die, fine. But I may die when these things aren't being done. I can't see any reason to go to any great lengths to guess when I'm dying and scurry around to do these things." In effect, that's what happened. Since we continued her life on hospice exactly as we'd be living pre-hospice and pre-lung-cancer-diagnosis, her last months, indeed, included all of the comfort requests and more that were eccentric to her. However, the only one that was specifically followed during her last hours was the oil massage. The "personal care" agenda (teeth brushing, nail clipping, etc.) was not followed during her last hours nor, for that matter, during her last day and a half, except for a much less strenuous cleaning than usual when she decided, Sunday morning, less than 24 hours before she died, that she wanted to arise, watch a movie and eat. She barely tolerated having her underwear changed when it became necessary. I certainly wasn't about to try to brush her teeth or clip her nails.
Interesting about her nails. The week before she died I noticed as a part of our regular routine that her finger and toe nails needed clipping. They weren't unwieldy but, you know, they could've used a bit of a trim. This was normally a task I accomplished in the evening while she was watching TV, just before I rubbed her legs and arms with lotion. It was also a grooming activity she enjoyed. The last time I attempted it, though, as I started on her fingers she complained that it hurt. I thought I might have gotten too close to the quick or the finger pad, even though I was always careful with this because my mother was very sensitive to pressure on her finger tips. I pulled the clipper back to the point of barely taking off a sliver of nail and tried again. She yelped! We abandoned the task. I wonder, now, if super-sensitivity is a hallmark of a body heading toward shut down.
Regarding Wishes 4 and 5, which involve requests specific to the hours just before death such as the desire to have people around and how one wishes these people to comport themselves at the deathbed:
- I find the following troublesome: "I wish to have people with me when possible. I want someone to be with me when it seems that death may come at anytime." I am reminded of something I read in both the Final... books: That it isn't uncommon for people to want to die unaccompanied and the way this desire usually plays out is that the dying one waits to expire until everyone is out of the room. I suspect that, in contemplating our deaths, we all think that we would prefer to have a loved one, or more, at our side when the moment arrives. I also suspect that it comes as a surprise to a dying one to realize they'd prefer to be left alone at that moment, so I don't see how this desire could be anticipated. Thinking about this caused me to wonder about a lot of the wishes we design for our deaths when our deaths are not on our obvious horizon.
- One request that is startlingly absent from this section, too, is a wish to have beloved pets not only near but allowed intimate access to the dying one, if possible. I am sure that having The Little Girl, one of our cats, curled at her feet was a primary factor in keeping my mother calm as she negotiated her last, most challenging and surprising night on earth.
- The Fourth Wish request, "I wish to be cared for with kindness and cheerfulness, not sadness", brings to mind this excerpt from the movie "Yes" I recently published over at In Sane Grief. This request sounds so magnanimous and politically correct and, yet, I wonder, how often does it happen that a dying one would prefer to see a little grief drama at their bedside; wouldn't mind if people cried and asked them not to "go"? The point I want to make is that perhaps yet another important wish has been left off this list: The desire to allow the event of death to be what it is, what the moment makes of it, and for those looking on to be sensitive enough to the dying one's condition so that if, for instance, some drama seems in order, despite what the dying one specified when dying was on her or his radar screen only as an objective possibility, not an in-one's-face reality, that drama is allowed and welcomed.
- Wish 5 is full of politically correct attitude. Some of the wishes I can imagine most people want at their death bed: Wanting family and friends to know that the dying one loves them, for instance, unless, of course, the dying one hates their family. It's easy, though, for me to imagine scenarios of prolonged death approaches in which the dying one may wish to express stubborn desires to refuse to offer or ask for forgiveness; a desire to express bilious thoughts and feelings one last time; a desire to be assured that long standing family conflicts continue.
- Another request in this section, the wish that family and friends remember the dying one as she or he was before the terminal illness, well, that one bothers me, too. It implies that a person is not a totality of all her experiences but only those that are easy for others to handle. I have, for instance, no desire to not remember my mother as she experienced dementia. Her peculiar path through dementia revealed so much to me about her character that I would likely have missed, otherwise. The way she died was a revelation to me. As the Final... authors assert, if it is at all true that one lives in character it is even more true that one dies in character. It seems inhumane to me to purposely tune out this last succinct character statement by insisting, as we, in this society at this time, believe is appropriate, that "me" dying or "me" working my way through a difficult disease or period in "my" life is somehow beside the point of who "I" am.
- Wish 5 contains a few requests that make assumptions about a persons beliefs about death that may not be true but are, at this time, politically correct. One of them specifies that family and friends "know" that the dying one isn't afraid of dying and believes it is "not an end, but a new beginning for me." What if the dying one doesn't believe this? What, too, if the dying one has a preference for celebrating their approaching death as an end? What if the dying one actually is afraid of death but realizes this only as death approaches? What then? How would you want someone standing sentry to react to your fear in the maw of death?
- The last request in the Wish 5 section that troubles me is the desire for friends and family "to get counseling if they have trouble with my death. I want memories of my life to give them joy and not sorrow." This is an attitude toward grieving in our particular society that creates an enormous struggle for mourners. It is so ubiquitous that not one of my grief support group meetings goes by but what someone doesn't express some variety of the following: "I feel obligated not to express my sorrow." Just yesterday, at a Holiday Grief Support Work Shop, a woman said that she's trying hard to keep busy so that she doesn't wallow in her sorrow. As the facilitator continued to question her it became apparent that the problem wasn't that she was wallowing, it was that she was denying herself the opportunity to experience her sorrow and travel through it. As our facilitator says, grief will have its way with you, even if you refuse to acknowledge it. If, however, you refuse to acknowledge it, grief's way will be more insidious and difficult to manage than if you welcome it. It is astonishing how many times someone in group will say, out of an incomprehensible fog, "I'm having trouble with thus-and-such and I don't understand why." Time after time our facilitator gently responds, "Because you lost your [wife, or sibling, or child, or parent]." The pressure to "get better", to recover from grief is internal and external in our society, which is one of the reasons that many grief support groups provide the support one absolutely needs in this society to insist on one's own grief needs.
  A conundrum is posed by this one wish of joy over sorrow. On the one hand, in our society, even mild grief requires special permission, so it's probably a good idea for almost everyone who is grieving to acknowledge and seek support from a community of grievers, whether that be in one's mind, among one's compatriots, in books or in a support group. On the other hand, the particular joy vs. sorrow wish continues to codify that, somehow, sorrow isn't all right, it's a perversion of living. Let me tell you, it isn't. One thing I've learned from grieving my mother is that the ability to feel profound sorrow extends one's humanity. Wouldn't it be better if, somehow, in very specific phrases, the Five Wishes document went a step or two toward acknowledging the legitimacy and multi-faceted nature of sorrow in the face of the haunting mysteries of loss and death, assuming that the dying one wanted this acknowledgment?

    Despite my above considerations, I recommend the Five Wishes document as a way to spark conversations about and consideration of death that is much needed in our society. I also think that the mere existence of the unique requests that it already suggests encourages someone contemplating her own death to think out of the coffin regarding what death means to her and what messages she wants to pass on about her life and death.
    As for myself? Well, at the moment I've got a peculiar view of such documents. I'm in a period where I still don't consider myself out of the woods as far as "excess mortality" is concerned. I still have days, though much less frequent than previously, during which I hope I am no longer alive by the end of the day or, upon retiring, I hope I "wake up dead". I also consider scenarios in which I, for instance, fall at home while doing some chore and am left in an irreversible coma on life support. When I envision these possibilities I derive a perverse delight from imagining the mess either scenario would leave in my dead or almost-dead wake. In addition, I rather like the idea that anyone who becomes aware of either circumstance will be required, by my lack of documented wishes, to react from their own resources without dictation from me.

Important Amendment:
    In my usual manner of doing things with my ass turned askew, after I wrote the above I decided to research commentary on the Five Wishes document. Wow! It seems that there is significant concern about the oblique intentions of this document and the legality of Wishes 1 & 2. Here's a list of the links I discovered, in the order I discovered them, with a short summary of the information each contains:

Wikipedia's Article
Mostly a cursory description of the document, this link also suggested to me that there may be legal problems involved in using this document and spurred me to further research, included in the next four links.
Huffington Post's review of the document by Barbara Coombs Lee
This article takes issue with the religious, pro-life-in-regards-to-death underpinnings of Five Wishes and discusses the confusing legal ramifications of the wording in this document once push comes to shove and medical personnel become involved. Ms. Lee, toward the end of her article, states: "My advice --- use your own state forms. You can download them free, along with instructions and useful additions to the form, at the Compassion & Choices website." In that statement, the phrases "download them free" and "Compassion & Choices website" are links.
Powers of Attorney vs. The Five Wishes Advance Directive
This article, while specific to Illinois, raises some interesting questions about the document's legal viability that should probably be researched from state to state. It directed me to the article it summarizes in the IBJ that is a detailed analysis of the Five Wishes Advanced Directive as it relates to Illinois law. The article it summarizes can be accessed through the next link.
Be Careful What You Wish For
Although this article is specific to Illinois state law, it raises interesting legal questions that could conceivably affect its use in any state. It fleshes out many of the concerns expressed by Ms. Lee in the Huffington Post article, linked above.
Five Wishes: A Rebuttal
In the interest of fairness and curiosity I included this link, which is a rebuttal of the articles in links 3 and 4 above. It includes commentary from the website author about the rebuttal, which is interesting in itself.
This article reminded me of an incident that took place during my mother's last hospital stay that underscores the contention that any legal document can be undermined. A few days into my mother's stay I decided I wanted to look at her medical records. The Health Proxy my mother signed in 2004 allows me this right. The head nurse on the floor that night, though, refused me, citing the Proxy as stating that it was to be invoked if the patient was reasonably not able to manage her own care. The head nurse had somehow decided, despite that my mother could barely mumble, was clearly more confused than usual and wasn't even sure where she was, that she was "reasonably" capable, asked her if she wanted me to see her records. My mother, after considerable inane head swinging and other indications that she wasn't clear about where she was and what was happening around her, said, "No." The nurse decided to heed this particular, "no", even though the only word my mother had uttered in response to any attention over her entire stay had been "no". I was very familiar with this strategy of hers. It was her way of expressing her consternation at the situation. The head nurse, however, had no such history with her and, as well, had been giving me covert but well understood messages that my constant presence and oversight at my mother's bedside were annoying him, even though he often expressed appreciation for the help I also offered.
I decided to consult the hospitalist, with whom I was more than familiar by this time. He reiterated the head nurse's stance.
I responded that this reasoning was faulty and cited detailed and determined explanations for exactly why her behavior was as it was. I asked the physician to reconsider. He decided to administer an off the cuff mini-mental exam. The results convinced him that I was right. It was a good thing, too, because once I was granted access to the records, with his oversight, I discovered that some of the items and dosages on the detailed medication list I'd submitted at her entry had been overlooked or mis-transcribed; one medication that her PCP had, for specific medical reasons, warned against was being given to her and, as we later discovered, was part of the reason for her increased confusion; an additional diagnosis had been granted her by a social worker as "failure to thrive", which I was able to convince the physician was wrong; my involvement in and knowledge about my mother's medical care had been totally misrepresented by the same social worker and had been part of the reason why the head nurse and the doctor were leery of my involvement as Health Care Proxy.
Although all this was corrected, it was a frustrating lesson in what can happen when legalese and medicine mix.

Despite the concerns listed above, which require serious deliberation, I still think The Five Wishes Document is a serviceable overture. If nothing else, it introduces the possibility of, say, writing a cannon into the composition of your death experience.

This will be my official "More Changes" post.

2009-11-13T17:18:00.004-07:00

    I was reminded of yet another change while watching, this afternoon, a TCM movie I'd DVR'ed a while ago, Once Upon A Time in the West. I don't know why I wasn't consciously aware of this change before because it's been going on since the day my mother died, or, well, maybe a few days after her death, since I and none of my family who came to visit that week used the TV or DVR for a couple of days into that week. The change has to do with TV volume. It's no longer necessary for the TV volume to be at "20" or higher. It wasn't uncommon, either, when my mother watched TV, for the volume to be at "35" to "45". For some movies and shows that were recorded at low volume, I can remember taking the volume all the way up to "63", which is the highest of which our TV is capable. Since my mother died the volume sits anywhere between "10" and "15". I think, occasionally, for low volume recordings, I may have taken it up as high as "20", but I can't be sure. I just turned the TV on to The Weather Channel, turned it up to "20" and that seems earsplittingly high, now. I'm grateful that my hearing didn't suffer from the TV volume that suited my mother. As some of you may recall, the police were once called on us here in Prescott because of the TV volume. That incident remains one of my (many) favorite memories of our adventure together.
    I've not completely stopped using closed captioning or movie subtitles, but it's nice not to have to use them, as CC typically cuts into part of the video (not usually true of DVD subtitling, though). However, I'm glad I know how to trigger it, especially when I'm watching something that features someone who mumbles instead of talks.

    One other change. I don't eat nearly as much meat as I did when my mother was alive. She needed it because of her chronic iron deficiency anemia and I don't dislike meat, so I ate it along with her. Previous to living with her, though, I used meat more as a condiment than as a "main event" and was happy with this. Without thinking about it, I've gone back to this way of eating. I can't say I feel "better" than I did when my mother and I ate according to what she needed and we both liked, but I don't feel "worse", either.

    From now on, when I think of a change, I'll look up this post, add the change here and date it within the post. So that it'll be easier for me to get to both, I'll add both this and the original "changes" post to the Mom & Me Journals Special Posts section over there in the Links section to the right.

Amended 11/22/09:
    Yet another change that's dated back to a week after my mother died: This home produces so much less garbage that I typically put the bins on the curb for collection once every two to three weeks. I wait until they are about two thirds full. When Mom was alive both the recycling and the regular bin went out every week without fail and were full to the brim. More than a few times I'd have extra garbage that I would have to save until the following week for collection. Much of the garbage produced was my mother's disposable briefs (which we called her "paper underwear", which went over much better with my mother) and the other paper products which made caring for her much easier and much more sanitary.
    I am astonished, now, when I think about how much garbage caring for an Ancient One produces. A good half or more is not currently recyclable, at least not in this country. Makes me wonder about the fate of landfills when my own Boomer generation reaches The Age of Disposable Product Maintenance. It's also hard not to consider how much less garbage we would have produced if I'd, for instance, used washable briefs and cleaning/catching cloths more. I wondered, too, how much more work would have been added to an already very busy day and how much reusable briefs, especially, would have increased the number of washes I did, thus, the amount of hot water and electricity used. I decided to google "adult diaper services". With "omitted results included" I got 10 listings, so this type of service doesn't seem to be particularly popular. I discovered, though, that reusable adult incontinence products that don't contribute to the waste stream and mimic typical briefs do exist. Here's a sampling of what's available. Wish I'd known about these. Yes, they're expensive, but significantly less so when I consider how many disposable pads and briefs I bought for my mother throughout our years together during which she was incontinent. It's hard to tell from the ads, too, how absorbent they are, thus, how many per day I would have used and how much they would have increased my use of our washing machine and dryer. In the last two years or so of my mother's life I was doubling up the heaviest duty disposable briefs and adding heavy duty disposable pads inside the inner diaper for her "night sleep" and, in varying degrees, for her nap, too. This combination almost never got her through the night without urine reaching the soaker pad. More than half the time, though, this combination got her through naps. Typically, too, because of the "wick away" quality of disposable diaper materials, we were usually able to get away with three to four changes during the day (not including the night briefs) without compromising her skin quality and comfort. From the descriptions of the reusable briefs, I can't help but wonder how effective they would have been for a someone who is completely urine incontinent, as was my mother in her last few years.
    Out of curiosity, I toddled around the internet to see if anyone was addressing, at least, the issue of disposable adult briefs and recycling. I found a series of posts written at the Gilbert Guide by Gary Hirsh, "Incontinence Specialist". Yes, it's a commercial site and it sells products but the series is surprisingly even handed and informative. I learned, for instance, in this article why it is that most waste management systems (in the U.S., at least) allow used disposable briefs and diapers for infants and elders to be disposed of in the normal landfill waste stream: "viruses contained in human feces have not yet shown any danger to waste collection workers based on current collection methods". My local waste management system is one of these. I looked up biohazard guidelines pertaining to soiled incontinence products and discovered that hospitals and medical facilities are not necessarily required to dispose of them using biohazard disposal guidelines; they aren't even necessarily required to treat the products before adding them to the "normal waste stream". It should be noted, though, that a little further research alerted me that there is growing concern that disposable incontinence products should be considered a biohazard. This article rates the biodegradability of all the components in adult disposable incontinence products. It also states staggering statistics about how adult disposable incontinence products have, in the last two decades, significantly overtaken the percentage of landfill space that child disposable diapers and briefs occupy. This article mentions that one of the best ways to reduce the carbon footprint that disposable adult briefs are leaving is to use longer lasting diapers. It also mentions that while such products have been available in Europe for a long time, they are not easy to find in the U.S.
    At least we're beginning to address this problem. I can remember, some years ago, conducting much the same research and finding nothing of value about this topic.

Oh, yeah! Forgot to mention the holidays!

2009-11-12T12:25:00.003-07:00

    My discomfort with the holidays remains the same as it was when my mother was alive, pre- and post-our-companionship. I know that I'll be spending Thanksgiving with family in Chandler but I haven't decided about Christmas, even though I was invited for that, too. I'm thinking I may simply trip down there post-holiday, while everyone's still off, rather than endure the spate of holiday events that crop up in their lives over Christmas. Last year it was fun, but I was numb and, anyway, I loved that my mother selected and provided the Christmas dinner for that celebration. I know, if she was capable of being aware of it, that she loved that, too. This year I'm not numb and don't have a catered Christmas dinner, courtesy of my mother, to offer. I've been invited for both holidays and I haven't exactly excused myself from the main Christmas celebration but I'll probably gently suggest my idea over Thanksgiving. I want to visit at that time, just to see everyone when they aren't het up in their usual extremely busy lives and, as well, my nephew has promised to take me shooting but, you know, I don't really want to "do" the actual holidays. That's normal for me. Decades normal for me (the second paragraph in the linked article clearly states my congenital attitude toward The Holidays).
    Even though my mother was Mrs. Christmas, I don't miss that, this year. Since I rather enjoyed some of it, in fact, I don't not miss it, either. I'll be putting up one of our small fiber optic trees, the one that my mother and I loved best and had the longest. I'm looking forward to that. I'm looking forward to decorating it, too, because we collected some great mini-decorations for it. I'm especially looking forward to gazing at its light display at night in a dark house. I'm sure I'm not going to miss preparing a special dinner for Thanksgiving or Christmas, nor am I going to miss "our" questionable attempts at holiday baking. Since my mom had dispensed with "the bother" of sending out Christmas cards a few years before she died, I'm not concerned about that, either, since I NEVER sent Christmas cards.
    The hospice organization that sponsors my grief support group is holding a holiday workshop next week. As the flyer states, it will provide "specific tools and strategies" that "can help you find ways to cope and to take care of yourself" during the holidays, since this time of year can be fraught with pitfalls for mourners of all stripes. One woman in our support group had an especially hard time over Halloween. Her husband was what could be described as a holiday maniac. For each holiday, no matter how seemingly insignificant, he had a holiday themed way of awakening her in the morning. "He was quite a character," she said, wistfully, after talking about what she missed during this years' Halloween.
    Even though I'm not feeling any more than my normal holiday dread, I'm planning on going to the workshop, primarily because I like getting together with my group mates and look forward to seeing them twice, next week. Secondarily, though, our facilitator mentioned that it's not uncommon for mourners to expect to have no holiday-related challenges and then find themselves unusually overcome with difficulty; or vice versa. Although I'm expecting no new problems (I sailed through my mother's birthday [month, since, at her insistence, we always treated the entire month of August as her month] and mine without a problem), I think it might be a good idea to be prepared, just in case. I know, for instance, that, although every year, except for last year, we made it a point to spend one evening in the car touring the area in which we lived (pre-2004 it was sometimes Mesa) to dazzle ourselves with holiday light and decorative displays, I don't think I'll be interested in doing that this year. Although I love holiday light displays as much as my mother did, my chief delight during these escapades, which always took place fairly late at night when the whim hit us and we knew the traffic would be such that we could stop in front of spectacular displays and study them, was enjoying and sharing her reaction. It was an activity, too, in which I never indulged before I became her companion, so it is exclusive to our companionship. I suspect, and am uncomfortable with the possibility, that I will be prone to feel her absence in the seat next to me much too keenly for my taste. I will, however, be watching my favorite Christmas movies this year, starting with my two top favorites, Love Actually and It's a Wonderful Life. I will probably throw in a few from our collection of bible movies, as well, since my mother considered these "Holy Holiday movies" and the appreciation I developed for them, through her, has not abated nor does it carry with it any unpleasantness since she died. In early summer, in fact, I spent a few days enjoying a bible movie marathon.
    Oh, and "just in case I don't see ya," (a quote from The Truman Show), I hope the holidays are easy on you, this year; especially this year.
    Later.

Things that Have Changed Since Mom Died

2009-11-12T10:23:00.003-07:00

As I predicted in an earlier post (can't find it right now), my electric bill has been reduced by about two thirds (sometimes more) since last year. I've catalogued some of the reasons, here:
1. Before Mom's death I used the stove at least once a day to cook breakfast (Mom almost always insisted on eggs and meat for breakfast) and more often than not used the stove, oven or both to prepare dinner, as well as our vegetable steamer. I'm still using the vegetable steamer a fair amount and I'm using the microwave only slightly less than before, but I'm lucky if I use the stove or oven once a week.
2. I used to do at least one heavy duty load of washing and drying once a day, including running the dryer extra long to dry the blankets on Mom's bed. At least once every couple of weeks I did an additional wash per day. Now I estimate that I do one medium duty load of wash about three times every two weeks.
3. My mother had a finely tuned internal thermostat that tolerated a narrow range temperature range. Thus, during the winter, the entire house, except my bedroom, was artificially heated well within what the house thermostat considers a "comfort zone". The bathroom she used was always artificially heated, day and night, including in the summer, because she was most often fully or partially naked in there and, as well, sink bathing exposed her skin to the coolness of evaporation. Now, I've turned that bathroom's heater off at the circuit breaker.
  I prefer a much cooler home than my mother. All the thermostats are set a little above 50 degrees in the winter; thus, the heater rarely clicks on. During the day sun floods the living room during the winter and that heat is enough for me except on really, really cold days.
  This winter, too, I'll be able to use the fireplace, although it hasn't yet been cold enough in here to do that. Since Mom was diagnosed with her various lung problems (long before her diagnosis of lung cancer) the fireplace has been off limits.
4. During the summer, because of the heat generated by the variety of health appliances in our house (oxygen concentrator, humidifier, breathing treatment machine, etc.) we used the front room air conditioner steadily during the day for about two months and used the portable evaporative cooler steadily pre- and post-monsoon. Last summer I used the front room air conditioner maybe seven times, only in the afternoon and usually only when the humidity from the monsoon dew point became overwhelming. I used the evaporative cooler maybe an equal amount of time. I was, in fact, surprised at how little I used both. It was a revelation to discover how compatible this house is with my internal thermostat.
5. For Mom, lights blazed quite a bit more than they do for me. The kitchen, dinette and living room overheads were always on from late afternoon until she went to bed. Her bathroom light was on a fair amount of time. Even when the living room overhead was on, so was the lamp on her coffee table next to her rocker; the combined light made it easier for her to read. Now, the coffee table light is usually the only light I use significantly. When preparing a meal in the evening I use the kitchen and/or dinette lights but they go off when I'm done. Bathroom lights are used only when I'm in the bathroom, which isn't often.
6. Her health care appliances, I'm sure, accounted for a fair amount of electrical usage, especially the concentrator, which typically ran 12 to 14 hours a day (more during the last few months of her life when she was sleeping more). The heat they generated, as well, was not insignificant. The concentrator, alone, helped heat her bedroom at night.
7. We used to use the electric kettle several times throughout the day. I now use it once or twice a day, never more.
8. I use the computer probably about a third less than I used to, especially since I'm not writing in these journals as much as I used to.
9. I no longer use the dishwasher for washing dishes. Previously, I used it once a day.
10. I watch probably a third to a half less television than my mother did (including movies through the DVR).
Water usage has been cut by only about a quarter, maybe less, although this only barely reflects on the bill because of all the other city services tacked onto this bill. I even had the city come out and evaluate the meter because I thought it should be registering less usage than it was, but the meter's fine. We just didn't use as much water as I thought we did or I now use more than I think I do.
My hours are significantly different. I am rarely up past midnight, anymore. I can run errands any time I want, which continues to delight me.
Grocery expenses are so much lower that it has been several months since I've been able to use the five cent per gallon discount on gasoline that my usual grocery allows if one buys over $100 a month in groceries. I'm sure I'll be downgrading my membership at Costco to the lowest category, since I buy only a few thing there, now: My carbonated water and paper products are about it. When Mom was alive it was typical that she'd get a yen for fast food about once a week. I can't remember the last time I bought fast food for myself.
I used to awaken and spring into action. Now, I awaken and, after an early morning walk, I mosey into action.
I'm reading, again! A lot! It's wonderful!
Although my extended family mostly remains about as communicative as it was before, one of my sisters and I have rebonded since my mother's death and we communicate much more often than we have in the last several years. That, as well, is wonderful.
I've changed the arrangement of the living room to suit me. It took me some months to do this but, it's done, now, and it's much more comfortable for me.
I haven't, however, yet, permanently taken up sleeping residence in my bedroom. Although this may seem odd, considering that my mother and I slept in separate bedrooms, from my bedroom I was always aware of the sounds of my mother's sleeping in her bedroom. I depended on hearing these sounds as I slept. Although I try, occasionally, to sleep, again, in my own bedroom, I am still uncomfortably aware of her absence and the lack of mother-white-noise that used to accompany my sleep. So, I continue to sleep in the living room, the heart of the house, although I recently decided I should pull the futon couch into a bed, instead of sleeping on it as a couch. This has much increased my sleeping comfort and I'm finally sleeping more restfully.
I haven't at all felt at loose ends since my mother died in regard to "doing". I was surprised at that. I thought, considering how full my day was of the various chores that accompanied keeping my mother alive, comfortable, feeling well and feeling loved, that I'd probably have trouble filling those minutes for awhile after her death. I didn't.
I've switched to using the shower in my mother's bathroom rather than my own. I'd been considering the switch almost immediately after my mother's death but it took some months to accomplish. It's a better shower, though, in a larger, more amendable bathroom and I'm very pleased to have finally made the switch.
The yard gets significantly more attention now than it did when my mother was alive.
The cats clearly enjoy not having to share my attention with Mom. Neither of them appeared to grieve her absence. I was concerned that The Little Girl might, since she considered herself my mother's primary caregiver and was always at her side, awake or asleep, but she carried on admirably after my mother's death, maybe because she so closely attended her death.
Although my household cleaning habits haven't changed (such as they are, thanks, Mom), the house is much less cluttered than it was when my mother was alive. Some of it, I think, is because I have the time, now, to put things away right after I use them, so I do. Some of it, too, is that I use so much less paraphernalia than I used to.
My hands no longer hurt and cramp when I use them. I can open new jars and bottles again without resorting to pliers, knives and other tools. I'm convinced, now, that the hand problems I used to experience were probably connected to the leg and arm massages I used to give her daily and, as well, especially during the last four to five years, using my hands and arms as her human walker.
I drink significantly less coffee than I used to.

Some things that haven't changed:

My mother remains on my mind all the time. I have not yet reached the point where I suddenly realize I haven't thought of her for periods of time here and there. That's okay with me, though. I am in no hurry for this to change.
I do not dream about my mother, at least not that I'm aware. I expected, after her death, that I might, especially since she and I dreamed about the other fairly often. But, I don't.
I miss reading out loud to her. A lot. Thus, since her death, at least a couple times a week, I read out loud to her and imagine the images her mind conjures as I read. She used to talk about these images frequently when we read together. It was one of my favorite times with her.
I almost never talk to her, nor think to her. I don't try to avoid it. It just isn't something that feels natural for me. I think I assume that, if she is capable of being aware of me she knows how much I think about her. Occasionally, if I'm pushing through a rough spot, I'll have a moment when I'll say something like, "I wish you had been right, I wish we were still together the way we were before your death," or something like that but I am rarely provoked to utter even that much to her. In addition, I think some of my lack of need to talk to her is that anything that ever needed to be resolved between us was resolved. I also think that, since we were no longer living out a classic "mother/daughter" relationship I didn't feel orphaned by her death. Recently, when I spent an afternoon learning and refining chainsaw technique with my nephew and having an exhilarating afternoon, I sorely missed not being able to enthuse about it to my mother. I imagined how excited she would have been to hear about it. I imagined that she would respond with something like, "Well, I think I'd like to try that. When will MPNP be bringing the chainsaw up next?" which is a typical response I could have counted on from her right up to the moment of her death. The extent to which I missed being able to have this conversation with her surprised me...but it didn't do me in.
Some of my friends that I made since becoming my mother's companion have been unpleasantly surprised that I remain as insular and "isolated" as I was when my mother was alive. My penchant for the lived-alone life, though, has been a hallmark of my life. That didn't change when my mother and I lived together and it hasn't changed since her death. I think some people I know expected that I would suddenly become social after her death, if for no other reason than to negotiate the sting of my mother's absence. Didn't happen. In addition, although I miss my mother, sometimes terribly, living alone, again, required no adjustment for me. As I remember exulting to my mother and father a few weeks after I first lived on my own, "I was born to this!" That remains true. I expect I will die, happily, alone.
Although there were adjustments I had to make, mostly internal, when I became my mother's companion, I think there are two reasons I had a knack for being a fine companion for her despite my love for living alone. First, I think, since my mother was very aware that I am a living-alone-and-loving-it person, she watched me grow up that way, she knew how to be with me "together". Second, I think she also understood that my desire to live alone is not because I am not socially skilled, nor that I am socially awkward. She raised me, after all. She knew I'd quickly find a happy medium, we'd both benefit and neither of us would make more, or less, of our companionship than we could stand.
I continue to love that this house and property feel like her home as well as mine. I love that members of the family love this, too. I am in absolutely no hurry to change this into "my" home, exclusively. In fact, I suspect I never will feel this way. It is, and I hope it remains, one of our family homes, "Mom's and Gail's home."

I will probably add, in subsequent posts, other things as they occur to me.
In the meantime...later.

My 10 Months of Grief-Stricken Thinking

2009-11-10T10:08:00.004-07:00

Wow! Hard to believe it's been so long since I've posted here. Reasons; hmmm...let's see:

I think I've figured out why so many caregiver blogs stop after the death of the care recipient. "What is there to say after it's over?" seems to be the obvious answer but there is much to think although, for me, there has been little to think about my companionship of and caregiving for my mother and much to think about grieving her absence. Grief makes it hard to express what one is thinking, though. Some months after my mother died I joined a local grief support group. I know, I'm not a support group person but, I can tell you, I'm DEFINITELY a grief support group person. Being a part of the group I joined temporarily modified (or, perhaps "mollified") my usual urge to write about my life, thus, in this case, about grieving my mother. More about that and other grief experiences over at In Sane Grief (yes, I remain maddeningly compartmentalized).
Around the same time I joined the support group I also became heavily involved in rallying support for health care reform within my local community and through my Legislative Rep and Senators and the President. That's been enlightening and highly discouraging, especially considering the outcome. It hasn't been canvassing for grass roots support that has been discouraging, despite what the media would have us believe about grass roots opinion. It's been working "on" the politicians and having to negotiate the media. Why would I mention this here? Well, I've been sure, for at least a few months, that my unexpected but highly understandable discombobulation from my mother's death and the end of our extraordinary adventure has had something to do with my despair over my attempts to help move this country toward reasonable, decent health care reform. It's very much akin to the what I experienced as I managed my mother's personal and medical business. I "won" for my mother, but it took enormous amounts of energy and stamina. I'm discovering that I only barely have the same for this health care reform fray. I expected my the experience I gained on my mother's behalf would be my strength. Turns out, it's a liability because, although the issues surrounding her life are resolved, the anger over what was required to keep her safe and comfortable remains. Perhaps I became involved in standing up to politicians and bureaucrats too soon after my mother's death but, unfortunately for me, the time is now, the fight continues and is even more urgent since Saturday's passage of H.R. 3962. I cannot let this go, so I'm stuck struggling with the multi-layered anger doing this provokes.
Death business proceeds. I know, amazing that it isn't done. My sisters and I ran into a hitch in my mother's estate that demanded that we probate it, despite the revocable trust. We're having a paralegal manage this. We'd handled about a third of the death business ourselves before we encountered the hitch. Luckily, probate can be strictly "informal", a designation of the Arizona death statues, and usually is. It just involves a lot of paperwork and waiting, probably into the first part of next year. I am, however, in full control of my life despite this interminable death business.

I STILL haven't done something that the literature and counselors and well-meaning advisers tout: Consciously redirecting one's life. I don't feel the need. Yes, there's a definitive break in my life between my mother's and my extraordinary adventure and my life now, but my life has been full of "definitive breaks" in circumstance. Assenting to be my mother's companion back in 1993 was one of those breaks. This business of negotiating breaks is nothing new. I continue take this break day by day. That's how I've always lived. It's always worked for me. Can't think of a reason to change, now.
If you're curious about my personal grief experiences, I've just written a post covering those over at In Sane Grief.

Caregiver Medical Advocation for Ancient Ones

2009-07-02T10:17:00.001-07:00

    I'm on a small roll, again, people. If you are involved with an Ancient One in any way that even smacks of caregiving, read this. It's a forthright Op-Ed article about the level of knowledge any particular doctor is required to have about medical treatment of the elderly. The short synopsis of the article? "...American medical schools require no training in geriatric medicine."
    The example in the article of a commonly mismanaged medical condition often presenting in elderly patients and the consequences of mismanagement is pneumonia. Shades of deja vu! This is exactly what my mother had a little over a year ago when she was hospitalized for the last time in her life. It took the hospitalists four days, multiple pleadings and vociferous arguments from me before, four days into her stay, her attending hospitalist finally and wearily ordered a neurological consult for her. It was the neurologist who diagnosed the pneumonia. The hospitalist spent those intervening four days declaring that she was exhibiting "failure to thrive" and trying to discharge her from the hospital and place her into a skilled nursing facility. He also insisted that she needed dementia meds, which I nixed. None of the hospitalists on her case contacted her PCP in Mesa for consult. All refused my repeated attempts to present them with her medical records, of which I not only had copies, but which copies I carried around with me while I was at the hospital and to which I referred almost constantly, much to the hospitalists' irritation, until the neurologist was called in on consult. He had the presence of mind and the experience necessary to accurately diagnose pneumonia, based on my computerization of her medical records and a recording I'd made of my mother 12 hours prior to her hospital admission when the pneumonia hadn't yet sapped her strength and her normal mental, physical and speech abilities. I had, by the way, offered the recording to the hospitalist a couple of times as evidence of her normal condition prior to hospital admission. The hospitalist had continually refused to listen to it, telling me that doing so "wasn't necessary". The neurologist, though, was astonished by what was indicated the recording and thanked me for bring it in. The entire fiasco up through her finally being diagnosed with and treated for pneumonia is recorded here, in case you're curious.
    Although the tardy treatment for pneumonia restored my mother's ability to speak, eat and think, it left her physically wasted. She emerged from the antibiotic and breathing treatments exactly as did the woman serving as an example in the article. She became, at this point, a throw-away patient. Once her lung cancer was diagnosed, the hospitalists decided to put her on hospice. Not that I disagreed with this, but I wasn't told, until she had been in respite care for a few days and continued to show a need for and an ability to benefit from short term rehab, that hospice won't sponsor rehab care. Luckily, our hospice people were savvy, recognized the problem and posed a solution: Sign Mom off hospice, put her into short term rehab, then sign her back onto hospice when she was strong enough to help me help her. From that point on, her medical care, with a few minor hitches, proceeded swimmingly.
    When I began the long, eccentric journey of becoming my mother's companion, I was adamant that I would never, ever, step into the fray with her professional medical personnel. I didn't have the training, I told myself. Even research, I believed, would leave me far short of being able to understand and intelligently participate in medical care decisions. I wasn't interested in irritating professional medical staff and possibly compromising the quality of her treatment by interfering. Even as I found it absolutely necessary to try to understand what was going on with her medically in order to make decisions on her behalf about, first, her diabetic treatment, then her diagnosis of and treatment for iron deficiency anemia, I was, consistently, at sea. It took me more than a few years to figure out how to obtain the slight information available on medical treatment of the elderly, let alone basic information about her conditions, how to evaluate the information, how to approach medical professionals and, finally, where to find the courage to oppose them, when necessary; and, believe me, it was OFTEN necessary, much to my amazement, continued disbelief and disgust. Even after nine years in successful medical advocation apprenticeship, I was continually rebuffed by the hospitalists and sometimes the nurses who cared for my mother from May 14th through June 29th of last year.
    In some ways I was lucky. I had two sisters with medical training, one of them with advanced medical training and certification in lab technology. I had the unwavering support of all my sisters. My mother's PCP was indefatigably willing to work with me and my constant desire to do what was right for my mother even when it meant not doing what he recommended, which, in retrospect, I realize, was actually rare, once he understood and gained respect for my concerted interest in my mother's medical profile and my dogged efforts to be as fully informed as possible.
    Yes, it's always a good idea to try to find physicians and other medical professionals for your care recipient who satisfy your personal requirements for your care recipient's medical needs. Unfortunately, in this country, at least, the following problems are inherent in this task:

Year by year, fewer and fewer people are going into or remaining in medicine as doctors and nurses.
Of these, a steadily declining number are specializing in geriatrics.
Most doctors, at this time, are severely rationing their quota of Medicare patients in their practices because Medicare isn't particularly good coverage from the point of view of a medical practice's pocketbook.
As the article linked to above states, rudimentary knowledge of geriatric medicine is neither required of or recommended to doctors-in-training and has no history of requirement or recommendation; thus, most doctors, practiced or not, have no idea how to approach the medical problems of the elderly, nor are they aware of their ignorance.
The medical-industrial establishment is in a state of four-square prejudice against avocational medical advocates and not inclined toward indulging professional medical advocates.
Medical advocation as a professional specialty is not covered by insurance, thus, seeking out professional help in this area can be and often is beyond the financial resources of the elderly and their families. As well, there, presently, exists no standard certification for professional medical advocates.
Insurance companies are not kindly disposed toward the medical conditions and requirements of the elderly.
It is not uncommon for kindly doctors, which we all wish for our loved ones, to also be ill-informed about geriatric medicine, such as the field is, which isn't, at this time, very well organized or very informative. The primary reason the neurologist who consulted on my mother's case suspected that she had pneumonia, he told me, was because he often had such cases referred to him by geriatric primary care physicians.

    Understand, I am not saying that it is across-the-board impossible to find adequate, trustworthy medical professionals to handle your Ancient One's medical care. I know a few caregivers (emphasis on the word "few"), full time and part time, who categorically state that they have (or had) confidence in their Ancient One's medical professionals and treatment. I know a few more people over 65 who continue to care for themselves and are satisfied with their medical care; these people, though, one of whom is in his 90's, are in excellent overall health and are not yet requiring treatment for conditions common to the elderly. I also know one woman who is about to turn 91, is is beginning to experience medical conditions common to the elderly, continues to live independently and who is finding herself mistreated and dismissed by her doctors; this in a community that is famous as a retirement haven and has a high ratio of elderly to non-elderly. As well, more often than not, when I talk with elder caregivers and the subject turns to the medical treatment of their charges (which it inevitably does), tension squeezes the conversation, doubts arise about the appropriateness and efficacy of previous or current treatments and fear knocks about between the sentences. Just as often, though, courage surfaces. I can't tell you how many times I've heard variations of the following from caregivers: "My parent's doctor said thus and so, prescribed this, it didn't work (or worked badly), I did some research, discovered thus and such, approached my parent's doctor (or changed my parent's doctor) and now my parent is doing better."
    People, it isn't just me. It isn't just my experience. It isn't just the NYT article to which I've linked above. Medical knowledge of and treatment for the elderly is not, at this time, in so many ways, even close to adequate. Part of the problem is that the elderly are only beginning to be medically studied as a group. Part of the problem is due to the health crisis our country is in at this time. Part of the problem is that we tend, in this country, even in our halls of medicine, to consider the elderly who need medical care throw-aways; it is as though all of them are "dying", despite the fact that some Ancient Ones, like my mother, refuse to consider themselves "dying" even when objective examination appears to tell us they are. Part of the problem is that, despite current, constant urgings for people to become intimately involved in and informed about their medical care, most medical professionals (in this country, at least) are not prepared for, nor respectful of, those of us who attempt to do this. All of these conditions don't bode well for medical advocation, especially if you're doing it avocationally. My experience, though, tells me that doing it is much better than not doing it. My sense tells me that as more of us insist on medically advocating for our Ancient Ones, despite the opposition from the medical-industrial complex, despite the difficulties, despite the fact that even when you do advocate medically you can never be absolutely sure that you know enough or are insisting on exactly the right thing, it is, overwhelmingly, caregivers' efforts at medical advocation that will be the primary cause of medical care for our Ancient Ones becoming knowledgeable, appropriate, healing and harmless.
    As I write this, an idea comes to mind: Suppose, besides typical caregiver support groups, caregivers began to organize medical advocation support groups, designed to provide the following:

A forum for comparing the medical experiences one encounters on behalf of one's care recipient;
A place to seek help in researching medical information needed for adequate medical advocation;
A clearinghouse for information on and ratings of local sources of geriatric medical care;
A way of consolidating and organizing local information, including caregivers' reports, regarding treatment of Ancient Ones by local medical establishments and presenting such information to medical establishments as ratings, for address and redress;
Perhaps, the retention of a professional medical advocate by the group for advice;
When individual cases become legally questionable, help with garnering community resources to address and resolve these cases.

Finally, trust me on this: If you think you can't do medical advocation for your Ancient One or are sure you won't, both of which applied to me when I began my journey with my mother, prepare yourself to discover that not only will even cursory knowledge of your Ancient One's medical experiences prompt you to do it, you'll realize that, yes, it's hard, yes, it's fraught with pitfalls, but not only can you do it, not only will you find yourself doing it, even if you are staunchly reluctant, the current state of geriatric medicine assures that, as you do it, you will improve the quality of your Ancient One's medical care and your Ancient One's life.
Later.

Palliative Care Grand Rounds 1.6 is up!

2009-07-01T10:07:00.002-07:00

    This month I didn't manage to get around to submitting a post but, as it turns out, I haven't gotten around to writing anything here or in any of my other journals since last edition. As some of you may have noticed, I haven't been reading much online, either; in fact, I haven't been online for much of anything, lately. This hasn't been a good period for me, writing wise; not sure why. I always keep the first of the month in mind, though, just so I don't forget to hit PCGR. This month's edition, as usual, is provocative and timely, and linked to the title above. Go. Read. Consider.
    No, I'm not down for the count...I've just hit a flat spot of perpetual sadness, which makes it hard to write, and I'm going with it.
    Later. You can be sure of it.

Palliative Care Grand Rounds 1.5 is up!

2009-06-04T08:18:00.002-07:00

This month it's hosted at Palliative Care Blog. My submission didn't make the cut, this month, but it's a good edition. For those of you with little time on your hands, it's also short and sweet and definitive.
Later.

Fire and Ice

2009-05-26T20:36:00.001-07:00

Some say the world will end in fire,
Some say in ice.
From what I've tasted of desire
I hold with those who favor fire.
But if it had to perish twice,
I think I know enough of hate
To say that for destruction ice
Is also great
And would suffice.
    --Robert Frost

    Oh, that's right, I'm supposed to be writing about watching The Ballad of Narayama (1983). I'm including the year because a first one, made in 1958, differs from the second in important ways, mentioned in the article to which the name of the movie is linked.
    I mentioned in the immediately previous post that I suspected I would be relating the movie to the secondarily previous post but I was wrong. Although the story of the movie revolves around one of the main characters, Orin, approaching the age of 70, at which time, if one lives that long, one is expected to allow oneself to be deposited on Narayama and die of exposure, the movie isn't about this. It's more a heavily symbolic piece, sometimes description, sometimes commentary, meant to compare and contrast traditional Japanese rural village existence with nature and allow the viewer to come to her own conclusions about what Shohei Imamura, the director, means to say about contemporary Japanese society circa 1983.
    I began this post with Robert Frost's poem because, through the lengthy end sequence in which Tatsuhei, Orin's eldest son and primary heir, reluctantly but dutifully carries Orin close to the top of Narayama and leaves her to die in the rocks among the skeletons of thousands ("or more", as Tatsuhei mentions earlier in the film) of other fated 70-year-olds, I found myself silently chanting Frost's poem. As Tatsuhei is descending it begins to snow, something he has made it clear he hopes will happen, as a benevolent sign from the god of Narayama. Later, at the end of the movie, the fool of the movie, Risuke, Tatsuhei's younger brother, who is always singing, mostly about his elderly mother, sings, once again, about how lucky she is, this time because it snowed as she was left on Narayama. Snow is considered to be an easy type of death by exposure.
    Although I could not help but read a few plus reviews and commentaries on the movie, I diverge with all that consider the movie cruel, even though it would seem, upon hearing the bare narrative of the movie, that its purpose is to depict and comment on the cruelty necessary to survive as humans. Not only is Orin left on Narayama, another dutiful son finds himself having to deposit his reluctant father on Narayama twice, having first delivered him tied in ropes through which the cunning father chewed. The second time, the son does not take any chances. He pushes his father off a precipice so that there's no possibility of return to the village. Tatsuhei witnesses this on his return from having gently deposited his willing mother to essentially the same fate. The movie does not overtly comment on which "go to the mountain" event is "better". Both are inevitable.
    Village justice is also highlighted when a family, the daughter of whom has been married to Tatsuhei oldest son, is convicted of stealing food and buried alive. Since the daughter/in-law is also guilty of this crime, she is lured back to her family by the scrupulously traditional Orin in order to have the same justice applied to her.
    The film artfully juxtaposes hunger, sex, birth and death among humans and animals, throughout the film. Additional seemingly simplistic but ambiguously haunting symbolism shimmers through the film: As Tatsuhei and Orin begin their journey up Narayama, Risuke, who is finally, at the age of 35, being introduced to sex by one of Orin's peers, suddenly awakens next to his consort, finds his mother's front teeth, which she earlier bashed out on a piece of stoneware in order to show that she, indeed, is not too healthy to die, declares to his bed mate that they are an amulet of rabbit's teeth and places them in his ears; After Tatsuhei returns, his wife and his new daughter-in-law are quietly shown to be wearing Orin's abandoned kimono and obi. Later, the camera lingers over a ruffle of entwined snakes; snakes in this film, according the article to which I linked the name of the film above, symbolize family and are used throughout the film to indicate fertility, family harmony and a family in trouble. While most of the family dinners have been a chicken stew, the final dinner, after Tatsuhei returns from his journey, is a stew of potatoes and eel. Check here (fourth paragraph from the bottom) if you're curious about the significance of the eel to Imamura. This review of a different Imamura film also contains the following quote which could easily apply the The Ballad of Narayama (in case you're curious to know what this reviewer thought of the film that is the feature of this post, I've connected that review to the immediately previous mention of the film's name):

Imamura is a director who despises humanity but loves individual humans. In fact, the more outrageous the individuals, the more Imamura showers them with the loving eye of his camera. Imamura seeks to expose the perverseness of human passions and social structures, such as those that led to Hiroshima or that lead daily to violent crimes on a smaller scale, but he holds out hope in the rehabilitation of individual sinners.

    Despite the ruckus of normal village life, all of which is shown in the story, watching the film was, for me a serene experience, even as I saw a dead male baby that had been exposed and poorly buried; an entire family victimized by village vigilante justice; several sick elders, one of whom is suffering so much she doesn't want to die of sickness, she'd rather go to the mountain; and, lastly Tatsuhei's physically and emotionally arduous trip up the mountain with his mother on his back. The film critic to which I linked in the immediately previous post regards the movie as a depiction of hard, rough life and pronounces the villagers cruel to elders. Incident by incident, it's obvious that life in this village isn't easy, but elder cruelty, within their system, doesn't seem to me to exist. Those who reach the age of mountain deposition are accorded respect not only for their age, but for their "sacrifice". Their trip up Narayama is surrounded in ceremony. The "cruelty" of the children toward the elders, particularly Orin, isn't cruelty, it's actually teasing, in which Orin delights and sometimes joins. Everyone in the village is aware that, if they should live so long, they, too, will be "going to the mountain". Some handle it easily. Some don't. In this village, it doesn't matter how one handles aspects of life...they unfold, anyway.
    My overall impression is that despite an attitude toward elders that natives of the U.S. would consider cruel, there are crucial differences in the way this village abandons their elders and the way we abandon ours. An ailing elder who hasn't reached the age of mountain deposition is cared for solicitously and tenderly within the family and by friends. Although we abandon our elders as surely as this village abandons theirs, ceremony and certainty, rather than guilt and angst, embrace their elders' fate. An act that seems unthinkably cruel to us is portrayed in a way that actually makes one wonder which is the crueler culture. It's hard, as well, to determine, from his direction and editing, how Imamura felt about the practice.
    My research about the film after watching it indicates that, although this method of handling old age is a popular subject of Japanese myth, there has, to date, been no evidence anywhere (the most obvious of which would be skeletal remains) to suggest that any Japanese culture, past or present, ever abandoned their elders to the elements at a certain age. If this practice never existed, I can't help but wonder what sentiment the myth satisfies; perhaps it's a sentiment that eludes my own cultural background.
    Frankly, as far as my own culture and its treatment of elders is concerned, I daresay I'm in good company when I hope that, one way or another, I manage to die before I become old. I'd even enjoy the idea of being deposited on top of a mountain in the snow to die of exposure while still hearty. Even if, approaching old age, I appear to be in fine fettle, well, one can never tell what the future holds; except, in this culture at this time, I can be fairly certain that the odds of me being abandoned to a miserable purgatory of social ostracism and poor quality of life, even if, somehow, I managed to luck into what we currently call "good facility care", are higher than the odds of me having a companion, as my mother had, like me. I didn't get the impression from this film that the villagers hated their elders, even though they refused to let them live beyond a certain age. I cannot escape the feeling that our culture hates our elders, even though we vociferously champion the possibility of most everyone living past the century mark. Thus:
I think I know enough of hate
To say that for destruction ice
Is also great
And would suffice.
    Later.

As seems to be happening fairly frequently of late...

2009-05-26T14:01:00.000-07:00

...I'm back after an extended absence, as you'll notice from the freshly published post immediately below. I want to mention, writing that post finally galvanized my interest in watching a movie I rented from Netflix several years ago (exaggeration, but only slight) that I expect will have a direct connection to the immediately previous post. The movie is The Ballad of Narayama. Although it may seem obvious to you, from the description of the movie to which I linked, why I haven't watched it until today, actually, it isn't the anticipation of its raw vitality that has kept it out of my DVD player: It's that I haven't wanted to think, much, about what I've been watching and I've suspected this movie is going to catalyze a lot of thought. Today, it seems, I'm ready. Stay tuned. Expect a post on the movie within the next 24 hours.
Later.

I don't remember the first time I heard (or, perhaps, read) the word "palliative"...

2009-05-26T13:30:00.002-07:00

...its root (palliate) or any of its forms. The first time I heard it in a medical context, though, was when I learned of my mother's lung cancer diagnosis, chanted simultaneously with the diagnosing physician "no treat", and we were referred to Hospice. When Mom's Hospice liaison was assigned and she spoke the word, I was familiar with it, had a sense of what it meant: The word "subdue" skittered through my mind. I figured it had to do with addressing the possible pain and other bothersome symptoms that might occur as my mother's lung cancer progressed. After that point, though, the word was rarely used. I didn't develop more than a nodding familiarity with it until, late in my mother's life, I was introduced to The Dethmama Chronicles and, through those, Pallimed. By that time the word barely mattered, since my mother was progressing through an already good life and was so well spotted, by me and her Hospice care team, that she could not have avoided a "good" death (according to her definition, of course, which included her certainty that she would not be dying).
Since Mom's death I've become even more attuned to the palliative care movement in medicine. I'm fascinated by it, as, frankly, when I think deeply about it, it seems as though, whether a patient has opted out of curative treatment for any particular ailment or has decided to pursue treatment, palliative care has a place in almost any kind of illness or treatment that could cause uncomfortable symptoms.
Finally, about a month ago, after reading one of the posts incorporated in the latest edition of PCGR entitled Cancer, NPR and thoughts on health-care in the U.S., posted at Words from a Witness, I was moved to look up the meaning of "palliative" and its root, "palliate", in two dictionaries, on a hunch. The first is my ragged, 40 year old standby, Webster's New World College Edition Dictionary of the American Language © 1968:

pal•li•a•tive, adj. serving or tending to palliate; specifically, a) alleviating. b) excusing; extenuating.
pal•li•ate, v.t. [< L. palliatus, cloaked < pallium, a cloak], 1. to lessen the pain or severity of without curing; alleviate; ease. 2. to make (a crime, offense, etc.) appear less serious than it is; excuse, extentuate.

pal•li•a•tive ►adj. (of a treatment or medicine) relieving pain or treating a problem without dealing with the underlying cause.
►n a remedy, medicine, etc., of such a kind.
pal•li•ate ►v. [trans] make (a disease or its symptoms) less severe or unleasant without removing the cause. ■ allay or moderate (fears or suspicions) ■ disguise th seriousness or gravity of (an offense).

    In the second set of definitions, medicine is in the foreground. I have no idea when this occurred and I'm not inclined to research it, but I find this interesting in light of the conclusion to which reading the above mentioned post at Words of a Witness led me.
    The post, written by Kirsten, who authors Words of a Witness, was prompted by an NPR interview in which Terry Gross of Fresh Air spoke with Dr. Robert Martensen about his book A Life Worth Living. Kirsten focused on the appropriateness of a palliative approach, particularly in regard to her mother, who is experiencing terminal breast cancer, and the difficulty of not only encouraging her mother's medical providers to assert the palliative over the curative, but encouraging her mother to adopt this approach, as well.
    As I read the post, though, I couldn't help but focus on a completely different issue. Let me quote myself from the comment I left: "Not until I read your post...did it occur to me that, through my assertive medical advocation on [my mother's] behalf, she actually received palliative care in ever increasing levels through the last five years of her life...Realizing this is an “Aha!” moment for me. I had no idea I was doing this...my only regret is that her (many) physicians were more often than not our opponents as I sought this type of care for her rather than our friends. What a relief it would have been (for me...because of my efforts my mother always lived in an atmosphere of relief) if all of us had been working in concert!...I think she lived longer and I know her quality of life right up to her final breath was superior because of my “palliative” intervention. I just wish I hadn’t had to do it alone."
    Until my mother was diagnosed with lung cancer and the immediate decision was made not to treat, it was an uphill battle for me, from 2002 up to the cancer diagnosis, to rigorously assert my mother's wishes not to be "poked and prodded" by medicine and to allow her to lead the rest of her life without extraordinary curative medical intervention. In the beginning, some poking and prodding seemed diligent: Attempts, for instance to determine the cause of her iron-deficiency anemia (all of which were unsuccessful), including a colonoscopy, which was pronounced a "torture" of a mistake by the internist who enthusiastically recommended and performed the procedure; interventions, all of them alternative medical treatments (non-alternative medicine refused to intervene because she was in Prescott and her PCP was in Mesa), designed to help her heal from a back injury due to a fall; a transfusion, followed by serious iron supplementation, when she had an anemic crisis; a hospital and short rehab stay after a stroke-mimicking low sodium incident; yet another transfusion in the fall of 2007 and an upping of her iron supplementation; weekly epo shots for about four weeks in an attempt to control her anemia (which worked, right up to her death); a short hospital stay for a debilitating and difficult to diagnose episode of pneumonia (which led to her diagnosis of lung cancer), followed by yet another rehab stay to help her regain enough leg strength to help me help her. My mother was not happy about any of these interventions, except the acupuncture for her back and the iron supplementation. It was typical for her to refuse any suggestion of tests or treatments. Sometimes I overrode her. Most of the time, though, in concert with her wishes and on her behalf, I battled test suggestion after test suggestion, including further scopings, bone marrow biopsies; some (although not all) blood tests (the frequency of which was really irritating my mother); medications with dangerous side effects in favor of those that did the trick more gently, or, sometimes, no medications at all. As I worked on her behalf to keep her life on exactly the even keel she wanted, I was responsible for her expulsion as a patient by two physicians. Luckily, her long term PCP always accepted her back and, from 2001 on, he and I slowly but surely came to an understanding that allowed me to opt for fewer and fewer diagnostic measures in favor of more and more palliative measures. In the final years of her life this physician, twice, took me aside and thanked me for taking such good care of my mother. Despite our disputes, he was, finally, not only convinced but appreciative of my insistence on a light-touch application of medicine to my mother.
    After I'd read and commented on Kristen's post, though, I listened to the entire interview. As I listened I became aware of what seems, now, to me like the more important facet of my in-home palliative care practice: That I was "here" and "there" for her, as her companion and intimate, all the time, not only protecting her from overly aggressive medical intervention, but assuring her, by my presence and my interest in her life, that, no matter what, we were a team, we knew each other through and through, we honored each other, including our idiosyncrasies and, no matter what we encountered, we'd get through it and come out on the other end smiling, joking and enjoying life. Not only, my "cloak" of care assured her, did I know I was important to her life, I knew she was important to mine and I was rigorous in letting her know this.
    The amalgamation of information that allowed me to realize this appeared throughout the interview. During part of the interview Dr. Martensen talked about his mother, 91, just as was mine when she died, who was declining, in assisted living, on Hospice, with no discernible quality of life, devastated by her own dementia, practically begging to be allowed to die. Her condition couldn't have contrasted more sharply with my mother's. Dr. Martensen attributed his mother's misery to her extreme discomfort with her dementia and her years' long assertion that she could not enjoy her life if her mind demented. This was surely playing itself out.
    Later in the interview Terry Gross speculated that, while everyone (well, almost everyone; my father wished he could develop dementia; he never did) of sound mind fears the onset of dementia and assumes it will seriously and devastatingly impair their quality of life, it's not unheard that some who develop dementia do not inevitably live the life of one condemned. Dr. Martensen agreed by telling of another 91 year old woman, also in assisted living, also somewhat more deeply ensconced in dementia than my mother, who continued her optimistic, wise-cracking ways, had procured a boyfriend down the hall, was visited daily by her daughter and was experiencing a very good quality of life.
    I remembered that before my mother began to dement, because of her experience with her mother's and sister's dementia, she, too, feared the possibility of dementia. Her eccentric character never allowed her to obsess over it, but, as she, for instance, over drew her checking account and I took over her bookkeeping, began to space appointments, had lapses of memory about this or that person and their lives, to which my response was to simply remind her, as often as necessary, she'd occasionally voice concern that she was "becoming like" her mother or her sister. Each time she mentioned this I'd face her fear directly, meticulously explain to her why her dementia seemed to be developing differently than theirs and assert that we could not assume what life held in store for her, especially since, even though both her mother's and sister's dementias were profound, they did not mimic one another. I'd polish the lecture by saying, "Anyway, Mom, it doesn't matter. I'm here. If you need me to take up slack, I will. If you need me to remind you, I will. One way or another, we'll get through everything together." Eventually, as I picked up more slack, as I managed more facets of her life, as I adjusted to every misstep of her memory so that, finally, neither she nor I fell out of step with one another, she relaxed. For the last six years of her life she stopped worrying about her dementia. It was handled. Well.
    As I have, often, in these journals, I couldn't help but wonder, surreptitiously (because, you know, every family's situation is different when it comes to caring for their elderly and I am painfully aware that Mom's and my situation is impossible for most families to even remotely duplicate), as I listened to the interview, what distinguished Dr. Martensen's mother from the wise-cracking woman and, for that matter, from my mother. Why was Dr. Martensen's mother spiritually devastated by her dementia? Why wasn't my mother? Why wasn't the wise-cracking woman?
    We don't have enough experience with dementia, the declining health of the elderly and living circumstances to infer any answers with any reliability. Some of it could be due to overall character traits and life long habits of living, as suggested by The Nun Study and another study mentioned recently in the New York Times. Some of it could have to do with the cause of the dementia. Some of it may have to do with the effect of comorbidities on the mental and emotional health of the Demented One. There's one possibility, though, that we're avoiding like the plague: Maybe part of the difference in how people adjust to their own dementia and physical decline is directly related to how their relatives and acquaintances adjust to it: Whether those in their closest social arenas bother to adjust to it, or flee from it for any of a variety of reasons, most of these reasons caught up in the attitude that, as a people dement and decline they become strange, no longer worthy of whatever attention they may need to remain in our quotidian lives. Several comments culled from the residents at the Laguna Woods retirement community mentioned in the NYT article linked above, where lively, floating games of contract bridge are often the ultimate judge of whether someone deserves to be helped to remain in the game of life, put it succinctly:

“When a partner starts to slip, you can’t trust them,” said Julie Davis, 89, a regular player living in Laguna Woods. “That’s what it comes down to. It’s terrible to say it that way, and worse to watch it happen. But other players get very annoyed. You can’t help yourself.”

More optimistically: The unstated rule at Laguna Woods is to support a friend who is slipping, to act as a kind of memory supplement. “We’re all afraid to lose memory; we’re all at risk of that,” said one regular player in her 90s, who asked not to be named.

For those in the super-memory club, [the possibility of medical treatments to delay, allay or prevent dementia] is too far off to be meaningful. What matters most is continued independence. And that means that, at some point, they have to let go of close friends.
“The first thing you always want to do is run and help them,” Ms. Davis said. “But after a while you end up asking yourself: ‘What is my role here? Am I now the caregiver?’ You have to decide how far you’ll go, when you have your own life to live.”

Finally: In this world, as in high school, it is all but impossible to take back an invitation to the party. Some players decide to break up their game, at least for a time, only to reform it with another player. Or, they might suggest that a player drop down a level, from a serious game to a more casual one. No player can stand to hear that. Every day in card rooms around the world, some of them will.
“You don’t play with them, period,” Ms. Cummins said. “You’re not cruel. You’re just busy.”
The rhythm of bidding and taking tricks, the easy conversation between hands, the daily game — after almost a century, even for the luckiest in the genetic lottery, it finally ends.
“People stop playing,” said Norma Koskoff, another regular player here, “and very often when they stop playing, they don’t live much longer.”

    These statements, although they are uttered by the oldest among us already in secure retirement facilities, are excellent representations of thoughts we all, in this society, have, statements we all make, actions we all take, when confronted with declining, dementing relatives. The rhythm of our lives in this society, so far, cannot, except under extraordinary circumstances and with effort that is, realistically, impossible for most people to manage, accommodate the rhythm of those of us who decline and dement.
    So, we leave out of the equation the possibility that accommodation by those who know the elder well may make a difference in the quality of the elder's life. We don't talk about it because we can't. Knowing that our lives are not set up to allow for the type of accommodation that is necessary, it's too painful to consider. If it turns out that the quality of care extended by others to the declining and demented, especially others to whom the affected have cemented life long connections, makes an apt difference not only in the trajectory of dementia and physical decline but in the quality of life and the desire to remain alive, well, damn, WHAT CAN WE DO? Our lives are, we believe, out of our hands, thus, our demented elderly must slip through our fingers. In any case, since few of us can manage the tasks of close companionship and care, the chances are excellent that we won't soon discover whether such care offers any benefits to the care recipient. We will only be able to extrapolate from the effects of rudimentary companionship and care and those extrapolations will likely be unconvincing. Thus, those of us not in decline, those of us not experiencing dementia, will continue to have little reason to reconsider our roles in the lives of our declining, dementing loved ones.
    How does all this relate to in-home, family extended palliative care? I'm not sure. I wonder, though, how much of a palliative effect my willingness to live my mother's life with her had on not just her felicitous experience of her own dementia, but on her quality of life, on her insistence on remaining alive, because, you know, she liked being alive, even in her last hours and minutes, even when it didn't feel very good.
    I know. I know. Dementia displays in myriad ways. Someone, like a certain caregiver in HBOs The Alzheimer's Project: The Memory Loss Tapes, can go the excellent distance in home care and, still, her mother develops profound dementia, although her quality of life appears to be excellent. Yet another caregiver in the series takes care of her husband through the enhancement of a skilled nursing facility and, still, her husband, also profoundly demented, mentions how lucky he, and "we" are. Quality of Life? Probably excellent. Yet another local family with whom I'm familiar goes the distance with home care and remains convinced that their mother's quality of life was "poor for a very long time"...and, in addition, the husband reveals, the stress of caring for the mother was so treacherous that his wife "dropped dead" from stress related illnesses a few months after the mother died.
    I can't help but raise the issue, again, though, and again, based on my own experience. I am certain, had I, early in the game, thrown up my hands, declared caring for my mother impossible, decided it was not worth the dedication it would call forth from my life and activated her long term care benefits, her dementia would have become profound; she would have, at some point, felt trapped in and resigned to a life of poor quality; she would have lost her desire to awaken yet another day; she would not have lived nearly as long as she did; she would not have, less than 24 hours before she died, insisted on "getting up", even though she was weak, shaky, confined to the wheelchair and needing to be securely propped, watched The Santa Clause, one of her favorite Christmas movies, with obvious pleasure, chatting amiably with me, as always, about the "realistic" North Pole scenes; savored a croissant and glasses of OJ and ginger tea.
    Palliative care isn't only a medical offering. It's the cloak family and other loving members of our communities extend to our Ancient, our Demented, our Infirm. It's the protection and alleviation inherent in not only medical advocation and morphine but managing the lives and, ultimately, becoming the close companion of those who need our care in order to continue a quality existence. These days we receive this first and most important palliative care from our families and friends only if we are lucky. Maybe, in order to leave palliative care less to luck and more to expectation, as we expand the influence of palliative care in medicine we need to raise an awareness within society that, well, true palliative care begins, that's right, at home.

My series of reviews on The Alzheimer's Project

2009-05-14T04:29:00.002-07:00

    My review of the Momentum in Science episodes and 14 of the 15 (the supplemental on The Demoe Family: Early Onset Alzheimer's Genetics still hasn't been uploaded to the HBO site) supplemental films is here at Open Salon.
    My review of the Caregivers episode is here at Open Salon.
    Now Mom and I can go to bed.
    In her words, "It's about time."
    Later.

I guess it's no longer true that I don't feel my mother with me.

2009-05-14T03:00:00.002-07:00

    Tonight, I feel her here with me as strongly as if she were sitting in her rocker, leafing through her tabloids, turning to chat with me now and then, or respond to something I mention to her...
    ...I'm sitting on the floor working on my computer, a warm cup of decaf spiced with a dash of rum, a couple dashes of pungent pumpkin pie spice and cream instead of half & half to give it that "toddy" feel...
    ...she's sipping on a cup of cocoa which she refused earlier in the evening with a dismissive, "It's too sweet," but, now, it's the witching hour, 0300, we should both have been long in bed but we're not, it's a good time for cocoa...
    ....she leans toward me, smiling slyly, and says, "Now, if our neighbors across the street get up to go to the bathroom in the middle of the night, glance out their window and see our lights blazing at this hour, they'll think..."
    "...we're having a party!" I quickly interject...
    ...she chuckles and winks at me. "Aren't we?!?"...
    ..."We must be," I agree, "why else would we be up at three in the morning?!?"
    ..."You know," she says, turning to gaze out the cathedral windows, "I don't know why, I've always loved this time of night..."
    ..."So have I," I say...before I continue typing...
    ...ah, I miss you, Mom, you're here, I can feel you, you're presence is making me smile, and I miss you, and you're here, and I miss you...

Late breaking information!

2009-05-12T12:55:00.003-07:00

    In case you're curious to know more about the life of Josephine Mickow and her daughter, featured on The Alzheimer's Project: The Memory Loss Tapes, the daughter publishes on a blog, Maple Corners, as "Annie". It's multifaceted, not strictly a "caregiver's blog" (whatever that means), forthright and there's more Art of Alzheimer's, as well as an example of Josephine's Pre-Alzheimer's Art. The pictures Annie takes of their area are worth the click, alone. Some of her recent posts contain interesting reactions to she and her Mom being featured on HBO's The Alzheimer's Project.
    I really like her outlook, her honesty and the pastoral (in the larger sense and without the idealized, romantic overtones) quality of her blog, which I suspect reflects from facets of her and her mom's lives.
    Later.

My intention, all along...

2009-05-12T09:55:00.002-07:00

...has been to review all episodes of the series of programs under the HBO umbrella title The Alzheimer's Project. Before I discovered Open Salon last week, my plan was to write them all here; which I more or less did with the first review of the first program.
    Since discovering Open Salon, in order not to duplicate myself, as of the review for last night's program Grandpa, Do You Know Who I Am?, I'm writing them all over there. I will maintain links to those reviews over here as I publish them. The link for the review for the second episode is here.
    Don't worry, I'll be back soon!
    Later.

Forgive my giddiness...

2009-05-11T13:46:00.002-07:00

...a few moments after I published a post on my nascent Open Salon blog, it was labeled as an Editor's Pick! I began blogging over there less than a week ago. Today's post is only my second. My intention was (and is) to write about a variety of subjects, not necessarily my mother's and my adventure (as I've been doing exclusively here), although I hadn't excluded that possibility. After watching The Memory Loss Tapes episode of the HBO series, The Alzheimer's Project last night and posting on it here, because I was so impressed with it and am aware of how few visitors I receive at this journal, I couldn't rest until I'd written a review of it at my Open Salon blog, incorporating some of my immediately previous Mom & Me post but amending, adding to, subtracting from and rewriting a lot of it, in order to encourage further interest in the series. Since that is only my second post at Open Salon, I was astonished that it was so quickly noticed and selected as an Editor's Pick.
    Forgive, dear reader's my excitement and shameless self-promotion. I'm so surprised and pleased I couldn't help it!
    Later.

P.S. at 1610 MST:  And, later it is! I just noticed the article mentioned above has been placed on the cover of Open Salon! I'm stoked!

I've made a commitment to watch The Alzheimer's Project...

2009-05-10T23:58:00.011-07:00

...running on HBO, starting today, through May 12, 2009. I committed to watching it with misgivings. Here's much of what I wrote to Mona of The Tangled Neuron (whom I consider my lay dementia expert) almost a month ago when I first saw the advertisement for the series:

HBO has been advertising a program that will begin airing May 10, 2009, called The Alzheimer's Project. They've been running fairly lengthy commercials about it, all of which have been bothering me, primarily because of the information I've picked up from your site. First, let me review the blurbs for you. I've transcribed them from the ads exactly as they are broadcast:
It's being called a documentary and will be airing three nights in a row starting May 10, 2009. The show is being billed as:
"An unprecedented four part series
and multimedia event
that depicts hope
on the horizon"
Some of the quotes on the usual ad, without, unfortunately, identification of the people who are speaking, are:
"There's been an exponential increase in our understanding of what causes Alzheimer's Disease, how we can target it and how we can treat it."
"It really is miraculous that within a short period of time we know a lot about the disease."
"We do have the research scientists, we do have the knowledge and I think we can beat Alzheimer's Disease."
"Many exciting discoveries {word sounds like "aim"} the root causes of the disease and therefore imply enormous therapeutic potential."
"The biology and the clinical understanding are, as we speak, getting put together at last. And we're gonna see real treatments out of it, as a result of that. It's a magic time."
"We are at the brink of controlling one of the major diseases affecting world health."
Yet another commercial for the show broadcasts the following quotes, the first two of which are identified with the speaker:
"We think that the HBO series will have the potential to put us to a tipping point, to get to that stage where the American public is talking about Alzheimer's in a different way." --Harry Johns, President/CEO of the Alzheimer's Association
"It's also critical that they understand the great promise and progress that have come in research over the past ten or fifteen years, which has really been, uh, something unimaginable not so many years ago." --Dr. Richard J. Hodes, Director of the National Institute on Aging
"Today Alzheimer's is rapidly becoming a leading health issue affecting more than five million Americans. But there is now a genuine reason to be optimistic about the future."
I'll be watching the series, I'm sure. I'm curious to see what the "caregiver" segment has to say...I'm always leery of TV programs that talk about and feature caregivers. However, because of your website and, as well, because of Patty's activism on the Alzheimer's front, the above blurbs and quotes immediately set off some alarms...for me:
My understanding is that we aren't actually that close to understanding, let alone treating, let alone curing dementia of any type, let alone all types. Is my understanding correct? If so, WHY IS THE PROGRAM MAKING IT SOUND LIKE WE'VE PRACTICALLY CURED ALL TYPES OF DEMENTIA???? What advantage would anyone in or out of the field gain from misrepresenting the issue like this??? Isn't it, in fact, more dangerous than anything else if this program is insinuating something that is downright wrong?
What is so wrong with the way "the American public" is talking about Alzheimer's that it needs to be different? Over the years that I've been aware of Alzheimer's, the "talk" has undergone some stunning transformations, including that those with Alzheimer's are, more and more, speaking on their own behalf and, as well, their relatives and caregivers are speaking differently about it than was true even 5 years ago (making an exception, of course, for Living in the Labyrinth by Diana McGowan, which is probably the great-great grandparent of the current "talk" and was published in 1993, yeow, I thought it was older than that; shows you how far the talk has REALLY come!).
How do you think, as an aggregate, the serious, thoughtful professionals who work in this field and whom you feature on your website would react to a program such as this that is being advertised as harboring, essentially, the "good news" that we are about to be saved from dementia?
Am I completely off base in my concerns about how this program is being billed and what it "promises" to contain? Are we really close to Never Never Alzheimer's Again Land?

    Since I'm writing off the cuff tonight, so to speak, and haven't been in touch with Mona regarding this particular post, I won't quote from her response but I think I can, without breaching confidentiality or copyright, say that she was guarded, too, but hopeful.
    Then, very recently, it clicked with me that the series was to begin on Mother's Day. I left a comment on her announcement of the series at The Tangled Neuron mentioning that I'd just realized this and expressed my misgivings about this being a good day for such a series to debut, for more than a few reasons, all of which, I'm sure, are obvious and mentioning that it will be interesting to see what sort of viewer stats the show will garner. Mona moderates her comments so that one of mine hasn't been published yet.
    Although I'd marked all parts of the show for DVR recording so that I could rewatch and scour if I felt the need, even up to a minute before the first part, The Memory Loss Tapes, aired, I was, well, similarly guarded but hopeful.
    Well, I watched the first part this evening and, I have to say, despite my prejudicial misgivings, I was impressed. The portrayals of all the people, those with dementia and those in their lives, sparkled with humanity, I thought. I was thrilled with how the editing revealed the eccentricity and individuality of each of the primary subjects (those with dementia), including how core aspects of their lifelong characters continued to broadcast loud and strong through their experiences of dementia. I think the editors got a little carried away with Yolanda Santomartino's hallucinations and forgot to give us a solid idea out of what sort of life her dementia experience evolved. Despite this blip, I was fascinated that she recognized herself in photographs but, when she looked at herself in the mirror, that wasn't her, that was "Ruth". We never imagine ourselves exactly as we are...and it was eye opening to see this universal human trait taken to the limit.
    It was very obvious to me that not one of these people's core characters was "lost" in dementia, even as some, particularly Joe Potocny, expressed the feeling of losing themselves or, like Woody Geist, clearly expressed the feeling that they didn't know where they were or where they were going. Yet, it was obvious (except for Yolanda, and, I think that was a fault of the editing) that each featured subject and all the peripheral subjects in the facilities were clearly individuals with histories and idiocyncrasies that shone through their dementia. I was relieved to see this. As you know if you've been a regular reader of my journals, one of my pet peeves with the portrayal of dementia is the tendency to focus on what, or who, has been "lost", rather than focusing on the person who exists in the here and now.
    I think my "favorite", if that word can be used, they were ALL stunning and I smiled, grinned, even chuckled, sometimes, throughout the entire film as these people expressed themselves with such obstinate individuality, was Josephine Mickow, The Queen of Scat. What a force! Her relentless creativity refused to budge in the face of her dementia. I was astonished and heartened that Josephine and her daughter communicated very well, in the moment. It was as if, as Josephine was creating her scat language to replace the language she originally absorbed and was forgetting (creativity stripped to its core, I think), her daughter learned it. That's what superior caregivers do...they follow more than lead. I thought her daughter appeared to be suffering from compassion fatigue as the film was made. It was especially obvious with her reaction to the stone incident, blaming herself for her mother putting the stone in her mouth. I could tell, though, despite this (we ALL have our bouts with compassion fatigue if we care for an Ancient and/or Infirm One for any length of time) she was the perfect companion for her mother and had created the uniquely perfect environment for her. I sensed, too, that she knew this, did it with utter love, bore it with striking humility and, in the periphery of the lens that was trained on her, I could tell she had a sense of self-possessed pleasure to have been able to do this for her mom.
    Woody, a man born with an amazing voice and a gentle soul, and Cliff, a born showman and magician, both of whom were experiencing fairly advanced dementia (although the film also made it clear, through demonstration rather than verbal instruction, that it is wildly inaccurate and unfair to make any assumptions about what to expect from those with dementia based on words such as "mild", "intermediate" or "advanced", which is another reason I am pleased with this film), mentioned how lucky they and "we" are. Woody mentioned it several times. I hope this makes people stop and think once more before they lump everyone with dementia into The Land of the Lamented and Lost.
    I couldn't help it: From the obvious clues given in the show about the location of Joe Potocny's blog, I searched and found it; that immediately preceding link will take you there. If you're curious to see how he has been doing since March of last year, when he was filmed, give it a click. His last post was a week ago. In addition, through immediately previous posts, both his frustration and his fighting spirit are clearly evident.
    I noticed a humble link to the right of the page introducing The Memory Loss Tapes episode. It's a link to a Viewer's Guide for the episode. The last page of the Guide (which is alternately titled "Discussion Guide") makes it clear that it was created for "screening and discussion panel[s]". I wasn't aware, from any of the many ads I'd seen for the series, that such panels were being organized. No matter. Aside from several pages of general information about Alzheimer's, it includes "Discussion Questions and Conversation Starters" that I imagine would be helpful in focusing on pertinent details of dementia and helping to observe and think about it more clearly. Some of the questions, as well, prompt the viewer to examine their own feelings about dementia, old age and caregiving. I actually found it interesting to privately contemplate my responses to some of the questions. I notice that all the episodes have Viewer's Guides. I haven't checked the others out. I intend to do so after watching each of the episodes. Don't overlook this resource if you have watched or are planning to watch the films.
    This first film in the series amazed me. It was so much more and so much better than I expected. Although I'm still leery of the rest, I am prepared, now, to be surprised and hope I am similarly pleased with all the episodes. You'll be hearing more from me on this series...
    ...later.

By the way, while I was writing...

2009-05-09T14:39:00.015-07:00

...the P.S. over at Insane Grief to my Mother's Day post below, flowers were delivered. The same sister who was concerned about my possible reaction to Mother's Day this year sent me a bouquet delightfully filled with some of Mom's all time favorite flowers: Huge Sunflowers (oh, god, how she loved these); Indigo Irises (as though they had come from our private stock in the backyard, a benefit from one of this house's previous owners, that thrilled Mom); A variety of carnations in complementary colors ("These always remind me of the tissue flowers we used to make when you girls were young, do you remember those, Gail?"); Goldenrod, and tiny lavender flowers for accent, and; a finishing touch of greenery.
    Perfect for my mother's (and my) favorite oblong yellow opalescent vase that arrived for Mother's Day a couple of years ago with an arrangement ordered from the same sister. I had even saved the tulle ribbon that had been tied into a bow through holes in the top of the vase!
    Yes, I burst into (easily controllable) tears when I answered the door and accepted the unexpected delivery. And, yes, they were tears I would not have wanted to miss.
    Thank you, MFS, from the bottom of my soul. Thank you, all my sisters, for thinking of me this weekend. You can be sure, I am thinking with equal concentration and love about each of you. And Mom. And everyone, everywhere, whose Mom now exists in Another Frame of Reference. Happy Mother's Day, to all of us.

Later.

A couple of months ago, one of my sisters brought up the subject of Mother's Day.

2009-05-09T03:50:00.005-07:00

    Her assumption was that it would be difficult for me this year. I thought about it and told her that I didn't think I'd have any trouble with it. "August is going to be the problem," I remember saying, "her birthday and all, you know." The "and all" is that it was never just that August 2nd was my mother's birthday. It was that the entire month of August was my mother's birthday month. In one way or another, if we weren't swamped with medical management (which happened in 2004 and may have happened with lesser impact in any of the other fifteen Augusts that my mother and I spent together), Mom's birthday was celebrated every single day of every single August, even if that only meant mention of it (and, it usually meant a little bit more: August, in our household, was THE MONTH for special dinners, special breakfasts, "Look what I found at the store for you" days). Mom wasn't just The Original Party Girl. I believe she invented The Celebration Sally. I remember parties like her infamous "Purple People Eater" party, for which she created the equally infamous "dime cake". That's right, she baked dimes into that cake and many others in the years to come.
    Our entire family picked up on Mom's knack for celebration. I think, for instance, it was actually my father who came up with the idea of Birthday Months. It didn't stop there. When one of my sisters had chicken pox in her teens we had a party, including a cake. She'd been complaining about how she felt "ugly", so we completed the celebration with a gift of a stuffed animal I found in a discount bin that was so dismembered it was impossible to tell what it might have been at its creation. I sewed round buttons for googly-eyes on the top of what was left and presented it to her as proof that there were, in the world, uglier beings than her. When one of us had a bad period we had a good party. When anyone did something the least bit cool, Party Time! Typhoon approaching? Typhoon Party. One of my mother's standard responses to just about any situation was, "Well, we'll have to celebrate."
    Mother's Day, in Mom's and my Latter Days household, was celebrated, of course. It didn't, however, have as much of an impact on me as her Birthday Month or The Holiday Season. We planned a special dinner which featured dessert. We always had fresh flowers, sometimes from me, sometimes from one or another of my sisters. There were gifts of an intimate sort and maybe a special or favorite movie. Most significantly, we'd spend the day (or a couple of days...that's one of the advantages of living in timelessness, you can stretch a day to your desire) talking about mothers in general and in particular, motherhood, mothers and children, Mom's pregnancies, family births and family memories. It was at the end of one of these days that I wrote my Mother's Day Tribute to My Mom. I know, these sound like memories that could knock me for a loop on an after death Mother's Day, but they're not.
    I assumed I wouldn't be celebrating Mother's Day this year since the person with whom I most enjoy celebrating it, my mother, won't be here. In fact, I've been in Ignore It mode since, well, I guess since her death. Then, yesterday [Oh, shit, look at the time! Make that Thursday.], the first biannual Post Office Food Drive Notification since Mom's death came in the mail. My mother always LOVED these drives, which take place on Mother's Day Weekend and some weekend during the holiday season. Because she reveled in them, so did I. Up until four years ago we'd spend the day before the drive (the drive is always on Saturday...the notifications always come in Thursday's mail) at a grocery store, usually Costco, shopping for our community. Mom insisted that we buy "the good stuff": Canned asparagus, for instance, instead of canned corn; seasoned stewed tomatoes instead of plain; Albacore tuna instead of "chunk light"; canned roast beef instead of Spam (which was a stretch for Mom because she was one of the few who love Spam, but she knew that most people don't); healthy cereals, including Grape Nuts, her very favorite cereal, which are usually more expensive, rather than the ones with "all that sugar"; hors d'oeuvre things like olives, green chilies, unusual pickles and fancy crackers; baking things like canned pie filling, condensed milk, baking soda and powder, flour; large cans of hearty stew rather than chintzy cans of anemic, concentrated soup; boxes of Mac 'n Cheese; tins of exotic teas, a can of French Market chicory coffee, bags of unusual types of chips. Part of the fun was imagining the look on strangers' faces when they discovered a box of Earl Grey Tea or a can of Jumbo Black Pitted Olives or a bag of 15 bean soup mix in their box. Suddenly, the imagined recipients were friends ripe for surprise and delight. We'd even discuss how one or another member of a family might react to a particular item. "The husband will like this," she'd say. "You know how men are."
    "Can't you just imagine what the kids will say when they see this," I'd say.
    I've always known my mother to be generous but I think her idiosyncratically extreme version of Food Bank generosity may have been connected to an unemployed winter I spent in Pinetop when one of my neighbors (I never discovered who) turned my name into a local Catholic charity for a food box over the holidays. I remember calling my parents and exulting over the contents, describing each item and what I would do with it, squealing over items that I never would have imagined would appear in a food box for people receiving temporary assistance. I always assumed food boxes contained the bare, necessary staples, like powdered milk and government issue "cheese product". My mother was as surprised and excited as I was.
    Over the last four years, though, as caring for her became increasingly intense, the short notifications made it impossible for us to participate for a variety of reasons. Occasionally she'd remember the food drives and ask if we'd participated. After the first awkward flirt with the truth, I'd lie and tell her we had. I couldn't bring myself to tell her the truth more than once because I knew, from experience, she'd ask why, I'd explain the impossible logistics of arranging a store spree with 24 hours notice, her dementia would cause her to deny that there was any impediment to her, or me, or both of us going...ai, yi, yi, I didn't want to face having to finally shut down the conflict by saying, "Okay, okay, there's nothing standing in our way except me saying we're not doing it this year." And her anger and hurt. Besides that, it wasn't a complete lie. Over the last four years I've been donating money in her name directly to the local food bank during the holiday season. Although I'm sure she would have appreciated this, she still would have asked about our grocery trips for food bank donation.
    When I got the notice Thursday, though, I was ecstatic. Mom is no longer health impeded. "We'd" be able to do this, again. I spent well over an hour at Costco on Friday with Mom's food donation proclivities riding on my shoulders, whispering in my ears, the two of us filling a cart full of "the good stuff". What a great visit we had! Mom and I walked every food aisle and discussed the pros and cons of every item we considered: Checking to see if this was in glass or plastic (no glass containers allowed, anymore); looking for boxes, rather than sacks, of things like meal, rice, dried beans (no sacks allowed, anymore); debating the quality of this brand of canned salmon over that; wondering if we should get the bag of dried mangoes or dried pineapple...why not get both! We even visited every food sampling kiosk, something I slipped out of the habit of doing once Mom no longer went with me to Costco because it took too much time and I preferred to get in and out as quickly as possible.
    When I returned home I decided I had way too much to leave by the mailbox, so I called our local post office and made arrangements to drop the stuff off in the afternoon. The office manager was thrilled with our donation. Her exclamations brought in a few back office employees. I was encouraged to tell the story behind the donation, which I did...with a few shared tears, much shared laughter and a few more shared stories about Mother's Day celebrations in my three new acquaintances' households. I finished by saying, "So, now, I guess, my mom knows I lied to her the last four years about our participation in the food drive."
    "I think," said one of the employees, "you just negotiated her forgiveness today...until the next food drive, that is."
    So, that was our Mother's Day celebration this year. I'm pleased the opportunity presented itself. Chance and tradition conspired to bring Mom back for a walloping, grand Mother's Day. You can bet we'll be doing this again.
    This one's for you, Mom. And the next, and the next, and the next...

P.S. added 5/9/09 at 1410 MST:  There is an an addendum to this post over at Insane Grief which discusses my reactions to this episode after the fact.
    Later.

Here's my future.

2009-05-06T13:41:00.002-07:00

    The link in the title to this post will direct you to a story about a 72 year old reclusive woman who lived in a "small town" in South Carolina. She died in her home. Her death, and body, and, by the way, the body of her dog who died subsequently due to dehydration, weren't discovered for 18 months, well after the sale of her house for back taxes which she hadn't paid (because she was dead).
    The story is sobering. It's also reviewed here as a cautionary tale (the link in the title has considerably more detail) at ElderGuru.com, a blog full of not-your-usual-eldercare-posts. I discovered the blog, and the post, yesterday when I was performing my monthly check of Honorable Caregiver Blogs, most of which are now inactive, and stumbled across this site in a comment to a post. The site looked interesting enough to peruse...that's when I found the post linked in the title.
    When I first read the post I thought of an episode of Northern Exposure which I've previously discussed. Sanderson's death in this episode was not unintentional and he made all appropriate arrangements, including for his dogs, before he committed suicide. However, this got me to thinking about unintentionally undiscovered deaths versus intentionally undiscovered deaths, a much less favored, I'm sure, but still occasionally preferred, I imagine, possibility.
    Considering that this woman's dog died of dehydration and she had a reputation in the neighborhood (that's right, she wasn't completely unknown by her neighbors) as caring for stray dogs, I doubt that her final wishes included dying unbeknownst to her neighbors. At the very least I'm sure, had she thought she was close to death, she probably would have made arrangements for her dog to be cared for after her death. According to the information about her health, though, she had no reason to believe that, at the age of 72, her death was imminent.
    As well, it's certainly true that contemplating such a long unnoticed demise is probably horrifying for most. I have no argument with the last paragraph of the news story and the commentary at ElderGuru.com, both of which bemoan the present lack of community in our society, speculate on reasons for it and consider the story a societal warning.
    Among my relatives, one (that I know of, there may be more) such death occurred. My paternal grandmother lived alone in a remote area of North Carolina. Although scads of relatives lived in a town close by and checked on her, they didn't visit every day; probably, though, close to once a week. They also ran errands for her, were her mode of transportation for appointments and were in fairly frequent touch by telephone, although it would not have been uncommon for her not to answer her phone, occasionally, especially since she had an outhouse instead of indoor plumbing. Grandma was an unapologetically depressive person. She could be considered reclusive but, frankly, I don't think she was that way by choice. The idea, alone, of visiting her could be oppressive. She was relatively young when she died, too, at 68, and not physically disabled nor was she considered unhealthy, although her long term (probably life-long) depression could have been considered a mental disability. She died, though, in the 1960s when neither chronic mild nor elder depression was considered cause for alarm, even if it was evident to families and acquaintances. No doubt all of these circumstances conspired to create her death circumstance: She died alone, in her rocking chair, of a heart attack. It was estimated that when she was discovered she'd been dead for "at least a few days".
    I've thought about such an ending. I have no spouse and no children. Since I am fairly reclusive and am (thank the gods) past childbearing age, these personal statistics won't change. Although I am in fairly regular to regular contact with a small group of friends and some relatives, it is not uncommon for me to go for periods of time not initiating contact and/or avoiding contact. I think my days of unplugging the phone for sometimes weeks at a time are past but if I were to, say, fall and incur a grievous injury that made it impossible for me to get to the phone, answer phone calls and/or call for help or to move about my house and keep myself physically sustained for survival, it is likely, considering what my cadre of friends and relatives know about me, that I could die without anyone noticing; probably not for 18 months, but at least for awhile and possibly long enough to compromise the life of my beloved cats.
    Added to that, some weeks ago when I was canvassing the neighborhood with pamphlets announcing the latest zoning issue meeting for the political protest group in which I was participating, I visited a home that had a notice of non-payment and threatened power shut-off from our local electrical company attached to the door. The door was mostly clear glass. Behind the door was a small dog yapping excitedly at me. After I placed my pamphlet between the door and the frame I peered through the glass for several long moments watching and wondering, feeling like an absurd cross between a Peeping Tom and a Concerned Neighbor. Except for the dog, I detected no other movement or sound inside the house. Was the occupant(s) hiding? Simply ignoring the electrical company notice (which is a common occurrence, I imagine, when someone is in dire financial straits)? Maybe the notice had just been placed that day while the occupant was out? Did the house contain a dead body? While I was contemplating what my next move should be, a neighbor pulled up in his car. I hadn't yet hit his house and he, being a concerned neighbor, stopped halfway to his driveway and stared at me. I scurried to his car, gave him a pamphlet and expressed my concern about the house I had just visited. Aside from seeming relieved that I was not dangerous, he nodded at my concern that the situation at the house would appear suspicious but, he assured me, he knew these people and he was sure "everything is fine." At that he delivered a crooked grin, indicating that, obviously, the power shut off notice indicated that "everything" is not exactly "fine" but that no one was dead and undiscovered, at least.
    Despite this man's acuity about his neighbor and even though I am fairly familiar with my own neighbors, my neighbors and I, I'm sure, would be hard pressed to know if anyone of us had died unexpectedly. Of my three closest neighbors, the ones I would truly consider "my neighbors", two of three live alone. One of these is elderly, the other has disabilities. Both of them are fairly reclusive but I can tell from comings and goings and a little informal knowledge that neither of them is likely to die leaving their body undiscovered for any significant length of time. I know the elderly neighbor has a check and balance system consisting, in part, of someone who visits regularly (a couple times a week), does errands for him, etc. I know the woman with disabilities wears a Medic Alert monitor and has far more visitors than I (which isn't hard to do). Among the four of us in what I would consider a neighbor-pod, I am the most reclusive, even though I am on speaking terms with all of them, likely the one of the four neighbors to whom unexpected and unnoticed death could easily occur.
    I should be frightened about this; most people would be. I should be calculating steps I could take to prevent the kind of death that Mary Sue Merchant, the woman in the news story, experienced. As regular readers will recall, immediately after my mother's death I did initiate a check system to cover me in case I should die of "a broken heart". So, I should continue that kind of system. Right? Well, that's a hard one. Aside from being a recluse and preferring to be left alone much of the time, the concept of dying unnoticed is actually a revered fantasy of mine. I like the idea of slipping away privately; of my demise being discovered by surprise some time after it occurs. I'm not thrilled about the possibility that any pets for whom I might be responsible when death visits me would be injuriously neglected if the discovery of my death took weeks or months. I'm not sure what to do about that. The point I'm making, though, is that for someone like me (and, I suspect I am not the only one who feels this way), setting up a death watch is a dicey option. It may have been for Mary Sue Merchant, as well. I'm sure she never wished that her dog would die because she died. However, considering her innate reclusiveness, it's possible that she may have harbored a death fantasy similar to mine.
    This, of course, I'm sure, isn't the reason that most of the elderly who die in such situations end up this way. Most of the time these death circumstances are due to neglect of family, friends, neighbors, professional associates, who are in the habit of neglecting the old. Such unnoticed deaths (although not unnoticed so long as 18 months, I assume) even occur in ASLs and nursing homes. Most people, young, middle-aged or old, don't want to be marginalized. This kind of marginalization, as well, isn't just responsible for unnoticed (and sometimes preventable...I suspect my paternal grandmother's death could have been prevented, for instance) elder deaths. It's also responsible for criminal deaths that are witnessed in some way but in which none of the witnesses wants to get involved, deaths of neglected children, deaths of neglected disabled and deaths of neglected mentally ill. Thus, it is perfectly appropriate, even urgent, to speak up on behalf of the unnoticed, unwilling dead and to pose such questions as: How could this happen? How can this be prevented? How likely is it that, in this society as it now exists, we can expect to change our attitudes toward the members of our communities in order to, at the very least, know about and, possibly, prevent unnecessarily unnoticed and unnecessary deaths in a timely manner?
    In the meantime, because of my personal idiocyncrasies, I have to raise one lone voice on behalf of those few of us who might want such an unnoticed death, who revel in the idea, who chuckle privately at the possibility that we might startle and befuddle our relatives, acquaintances and communities by dying some time before our deaths are noticed...
    A newsflash of sorts: As I was polishing off the last paragraph to this post, my Hospice Grief Counselor placed her monthly call to me. I couldn't resist telling her of the story about which this post is being written. She was as unpleasantly surprised as anyone would be, including, initially, me...but mentioned, as well, that in her experience, especially with the elderly, this is not an uncommon occurrence; it had even happened to one of her clients. A significant portion of our conversation revolved around this possibility, during which I told her that, although I share her discomfort with the story, a part of me actually likes the idea of that happening to me. We agreed about the pet-owner aspect of this type of circumstance; neither of us would want the same fate for our pets as was that of Merchant's dog. We also talked about appropriate preventatives in connection with me being reclusive and living among similarly reclusive neighbors, which she understood. She suggested an "unobtrusive" system about which she's heard that allows for privacy, eccentricity AND community awareness: Working out a system by which, for instance, you and a neighbor agree that at a certain time of day each of you always extinguishes (or activates) a light that is clearly visible from your neighbor's home, or open or close a particular shade. Thus, you and your neighbor can discreetly know that if such an action isn't taken it might be a good idea to check on the other or call the local police to do so. Good idea, for my cats' sake, anyway. If there comes a time, too, when I no longer have pets (I don't foresee this, I love my pets and, at this time in my life, know that I am inclined to host others as current ones die) I can opt out of the system...just for the mordant fun of it...
    ...later.

Palliative Care Grand Rounds 1.4 is up this morning!

2009-05-06T09:10:00.004-07:00

    It's a grand, grand round...hosted at a unique and interesting blog, Dr. Thaddeus Pope's Medical Futility Blog. The unadorned description of his blog: "This blog tracks judicial, legislative, policy, and academic developments concerning medical futility." Very unassuming, but, while you're there checking out PCGR 1.4, consider taking a look at what his online journaling offers. It isn't often you run across a medical blog written by a lawyer. His posts are easily negotiated, contain pertinent links and will surprise you at their applicability to the medical part of your life. It doesn't all happen in hospitals and clinics, Virginia.
    This month's issue of PCGR is loaded (as they always are) with incredible posts. Yes, two of mine are there, too; posts I wrote over at In Sane Grief, which is where I've been writing, lately and regularly. I've just begun working my way through this PCGR edition. There's enough there for a whole month (or a whole day, if you do it in one fell swoop) of great stuff pertaining to "palliative care, hospice, end-of-life, pain and symptom control, grief, and communication in the medical realm." At one time or another, that includes each of us.
    Later. Yes, that's right, I've got a new post for this blog coming up sometime today.

Thought I should warn you...

2009-04-21T08:27:00.002-07:00

...I've initiated yet another sub-site within the perimeter of my journal umbrella: In Sane Grief. That's where I'll be publishing my obvious grief related posts from now on. This, of course, means that grief may occasionally leak over into this journal but the flow, Here, will be staunched Over There. I initiated it yesterday with two posts:

an introduction (in typical me-fashion, not the first post) which will explain more fully why I've created another specialized journal, and;
a post about Broken Heart Syndrome.

    The premier of this sub-journal still doesn't mean that I've put this journal to rest. I continue to have much to say regarding caregiving to the Ancient and Infirm and the relationship between my mother and me. For the time being, though, I may be a bit busier Over There than Here, since I've embarked on a grief reading program to which I'll react Over There.
    Just wanted you to know.
    Later.

No, I haven't stopped my journals...

2009-04-13T17:21:00.004-07:00

...although I know it must seem like it. I sometimes imagine, with pathetic glee, that, if people wonder about my absences, they are thinking such things as:

Well, thank the gods, she's stopped beating a dead horse (my mother, by the way, would have been amused to consider that, after death, she might be referred to as a "dead horse");
Well, thank the gods, she's finally getting on with her life (as though life actually stops, which it doesn't, even when it seems as though it does);
Well, thank the gods, she was too damned wordy as it was (as though I care that I don't observe proper blog etiquette by fashioning short, sweet, easily digestible posts).

    Here's the situation: Hmmm...I am having trouble finding words for my situation. That's it. At the moment, the best way to describe where I am is that I have one foot here and one foot where ever my mother is. Discombobulating, to say the least. I'm caught up, as well, in a steady, confusing anger over the existence of death (now, there's an oxymoron for you!) This anger has taken me by surprise because this is the first time I've experienced it in the face of death; thus, I have to assume that I've never been as caught up in a relationship with anyone I've survived as I was (and am, I suppose) with my mother. I find myself recalling my primary reaction to the deaths of others in my life, including people to whom I thought I was intimate, as a peculiar equanimity. "Yes, it's tragic, or unexpected, or shocking, or enervating, yes I feel a hole where that person was," I remember thinking, "but everyone dies, I'll die, everyone I know will die, it's what we all do...blah, blah, blah..." oh my! I remember, as well, feeling a touch of envy that the person who died knows "something", "now", that I don't...something I'd very much like to know, provided, of course, that I can come back here...
    Lately, I've been considering that, in my entire life, my heart has been broken only twice: First, by the condition of being human. It happened when I was very young and discovered the treacherous obliquity of human sociality. I know, stating it that way is equally oblique, but, you know, I can't remember the event; all I remember is that I suddenly realized that humans, at least humans in my society, have more to hide than they have to reveal and this is understood to not only be good manners, but necessary to social survival. I have never recovered from that heartbreak, although I think I've lived relatively well with it. At least I've continued living. The second was by Death, in December of 2008, when my mother died. Not that I wasn't expecting Mom's eath. Not that I hadn't prepared myself for it, as much as I thought was possible, anyway. This time, though, my reaction has surprised me. Instead of considering death as natural, inevitable, even beneficial in some cases, certainly, at the very least, something to which I'd already adjusted, I'm taking it, this time, as a horrible, torturous, unreasonable joke; and I'm surprised, as well, that, once again, my heart is broken. It has darkened my vision; thrown me so askew that I'm questioning the so called "beauty" of life...nothing, nothing makes sense, any longer.
    I'm sure, of course, that much of this has to do with the unusually (in the sense that we had long since passed the mother/daughter or daughter/mother parameters and had morphed into an altogether different territory) intimate relationship my mother and I developed over the decades, before and during our final companionship. I'm also sure that it has nothing to do with me having lost "my mother". None of the stuff I've read or heard about people's reactions to losing their mothers, or both parents, seems to fit what I'm going through. Finally, today, it occurred to me that what I'm going through is probably more akin to losing an intimate companion, a spouse, than losing a parent. So, I've decided to seek out literature about this aspect of grief. I've located a few promising books, all of which are within our local library system and all of which must be transported, through the "hold" process, to my closest library and the one through which I have a card, but I expect them to start arriving within a day or two.
    In the meantime, I can't say that I'm denying myself opportunities to engage with Life. I'm reading again, as I mentioned, with much relief, and not just books and articles about grieving. I remain in touch with family and friends, as much as I ever did and, in some cases, more. I'm generally upbeat, socially; I've never been socially morose, anyway. Over the last few (maybe a bit more than a few) weeks I've been heavily involved in a rezoning issue in our part of town, have discovered an interest in and a facility with local politics, much to my surprise and delight, and, late last week, our group actually won our position. Death business continues at a slow but steady pace. I'm winnowing through all the issues surrounding, you know, reorganizing life from a material perspective in a respectable manner. I'm laughing as well as crying, eating well, getting out about as much as I ever did (I've never been a social butterfly), remaining respectably interlocked with my book club, making plans, here and there, initiating some of them, letting others psychically fertilize a bit more...from the outside in I probably look like I'm doing pretty well. If you were visiting my soul, though, well, I'm sure you'd hightail it out of there after a cursory visual pass before risking becoming mired in its hopelessness. It's a mess.
    Woman of words that I am, I am at a loss for words to describe the state of my soul and the effect it is having on my life, at this point. I consider writing here every day, more than once a day, but I just can't dredge the appropriate words out of my mind. I can write powerful letters to the editor for a committee opposed to a rezoning issue; I can edit the work of my novelist/friend and steer her to exactly the right reshaping of a thought or a scene; I can even appreciate, and know why I'm appreciating, a section in a book or an essay. I have begun reading through these journals and organizing the material to see if there might be something important and publishable here and I'm enjoying the process...but I can't put words to my internal devastation.
    That's why I'm not writing here, much, lately.
    So, you know, later...

Palliative Care Grand Rounds Vol 1, # 3 is up...

2009-04-02T12:53:00.002-07:00

...and it's a doozy! Talk about variety! It even includes music videos, a movie recommendation and a link to a zombie reinterpretation of Pride and Prejudice (click into the link in the post title, above, to find the reinterpretation). I'm excited that this carnival continues to develop into a force that underscores the colorful, fundamental applicability of the rather dry phrase, "Palliative Care", to everyone's lives.
    Yes, a post of mine was included, as well, even though I spaced this issue and forgot about the deadline for sending in contributions. I so appreciate being included; especially since I've been "away" quite a bit, lately. I've got a growing list of ticks in my constant-companion-notebook about posts I've been meaning to write...but I just haven't been getting back here, much, partially because I can't stop reading books, partially because I've become involved in a neighborhood opposition to proposed rezoning of a plot in this area, partially because I've been going through our overwhelming collection of movies with a so far fairly unsuccessful eye to thinning them out (as reported here) and partially because I continue to find the need to take large chunks of time to contemplate and negotiate Life without Mom.
    So, it pleases me to be able to redirect my readers to this month's edition of Palliative Care Grand Rounds at Jessica Knapp's journal, The Good Death. Visit. Enjoy!
    Later. I promise.

MPS and MPNC visited this week...

2009-03-21T14:20:00.000-07:00

...from Tuesday afternoon through Thursday morning. We had no plans. They wanted to get away and enjoy the extraordinary atmosphere up here; I have to say it again, this is a delightful, magical piece of property and seems to have the ability to restore souls. So, we were at loose ends and ready for trouble.
    Sometime early during the visit, MPNC mentioned that she is leading a fund raising team for the American Cancer Society. One of her scheduled activities is to have a multi-participant lawn sale, going on today, as I type, in fact. While she was here she spent a fair amount of time texting various members of her team, attempting to determine the amount of goods she could count on being donated. The inventory wasn't sounding promising.
    The idea sneaked up on me that this would be a good opportunity for me to jettison some of the stuff with which our house is packed. It would be peculiarly appropriate, as well, for her sale to be stocked with items from Mom's and my home, since MPNC's stated inspiration, attached to her solicitation notices, for leading a team, this year, is because her grandmother died of lung cancer.
    The three of us combed the house, culling donation items. We started with Mom's clothes. Mom and I loved keeping her wardrobe current and smart. One or the other of us constantly had an eye peeled for blouses, sweaters and pants that promised to delight Mom. Thus, her closet, dresser and a large box, besides, were crammed with two distinct wardrobes: One for cool to cold, one for warm to hot. Most people would think that, being an Ancient One, most of her clothes would not appeal to MPNC's sensibilities (she's an older teen) nor MPS's. About half the clothes, though, were claimed by MPS and MPNC for personal use. All of us were so surprised that so many of Mom's clothes were to MPS' and MPNC's taste that we joked about how much fun it would be for MPNC, especially, when she receives comments (which she surely will) about how "cute" are some of the blouses that she inherited, to casually mention that this or that piece used to belong to her 91 year old grandmother.
    The only glitch that stopped me from adding to the donations was the capacity of their car. Besides clothes, I was able to unload about half of a collection of vases, a rather expensive game that Mom thought she'd like but which we never played, three, that's right, three old but working VHS and DVD players, an old but working stereo set that I haven't used for years, some appliances that were little or never used, two years' worth of National Geographics (my mother loved that magazine and insisted on keeping each issue for later perusal and for use in making mental notes for lesson plans, which she continued to do right up to the month she died), several sets of never used crayons and colored pencils, a never opened package of ultra absorbent incontinence pads, a few books of interest only to my mother and a few DVDs. Funny about the DVDs. I expected I'd be having MPS and MPNC haul away loads of our collection, as there are many that were purchased in accordance with Mom's taste: The Jesus and Bible movies, for instance. Turns out, though, although I may never again watch many of them, I'm not yet able to part with them. The allure seems to be that, when I look at this or that DVD case, I remember my mother's specific reactions and so enjoy the recollections that I'm not yet ready to release my memories to the faint possibilities of being stirred only by other people's mentions of the movies.
    I had only minor problems letting go of the clothes. There are a few (less than 10) items that remain hanging in my mother's closet: A blouse belonging to one of my sisters that my mother loved so much when that sister was visiting in 2002 that my sister took it off her back and gave it to my mother; a gold lamè sweater-blouse that she loved to wear for the holidays; a deep red sweater, embroidered in glittery gold thread and studded with gold beads that was also a perennial part of her holiday outfit...things like that.
    The visit was a great way to start thinning out this home's stuff quotient. Unexpectedly, though, late in the day Thursday, I walked into my mother's bedroom (to which two of my sisters have already begun to refer as their bedroom), was struck by the loss of her clothes and wept. Suddenly, I understood an incident which took place Wednesday afternoon. While rummaging through Mom's dresser and tossing all manner of stuff into the donation piles strewn throughout the house, I ran across Mom's infamous tiara. "Someone will surely buy this," I said to MPS, twirling it between my fingers. "You might even get a couple of bucks for it."
    MPS burst into tears.
    "Oh my god, MPS, why are you so attached to this?!?"
    "Because the story behind it is so sweet," she blubbered.
    It is, I have to agree. The entire Elizabeth-I-hairstyle-complete-with-tiara affair is one of my warmest "Mom & Me" memories. I'm pretty much done with the evidence, though, but MPS, apparently, is not, so I agreed not to send the tiara into the hands of an ignorant buyer. Yesterday, though, I talked with MCS. She has a granddaughter who is a "girly" girl and has identified with the princess motif almost since, well, probably since before she was spit from the womb. She's in early elementary school and has a few plastic tiaras, some of which I've seen in pictures. She doesn't have anything as spectacular as the one I gave to Mom, though. I talked to MCS about the possibility of sending the tiara and all of the glittery barrettes to her, through MCS, primarily so that, if MCS chooses, she can "save" the hair ornaments for those special days and nights when her granddaughter visits. MCS was thrilled with the idea and knew that her granddaughter would be even more thrilled. Before I send them off, though, I'm going to check with MPS to see if she's ready for me to release the tiara from this home to another intra-family home. I don't want to disturb MPS's memories before she's ready.
    So, clearing out the house and retro-fitting it more toward the resumption of my singular life has begun...not without twinges and qualms, true, but I'm steadily strolling in that direction. I'm sure that this home will not stagnate into a devotional altar to Mom; I've already made too many changes for that to happen and, anyway, since we broke in this home together, much about the way we set it up was dictated by my habits, needs and desires. I'm aware, though, that this home will never be just mine. I'm glad it won't. I want my mother's resonance to remain here, not just for me but for our family. My long, loving companionship with my mother is a large part of who I am today and I remain awed at and grateful for how it shaped me. I will never tire of being reminded of, well, us.
    Later.

Yesterday I dashed out and bought all the Book Darts I could find...

2009-03-16T12:38:00.000-07:00

...at our local chain bookstore. Alas, the store had only two sets, so I ordered six more sets.
    Yes, I'm reading again, voraciously. That's why I haven't been back here much, lately. It took about two and a half months for me to complete my PhD in the Law & Order multi-series franchise and wade back into reading. The wading, too, was difficult. Although I rejoined my local book club in January, I found it distressingly impossible to read, initially. Every time I'd open a book, I'd be reminded of my mother's and my strenuous and enjoyable reading schedule, which had continued for decades, starting long before she and I became living-together companions. When we lived in the same city, prior to our official companionship, she and I would meet at least a couple evenings a week to read aloud and discuss a variety of books on every subject imaginable, including school text books that we found intriguing. When she and I were separated by too much distance to allow for face to face meetings, we'd send each other books, read them alone and discuss them over the phone or in letters. During our long companionship, after she decided she didn't want to participate in the out-loud reading, we continued, as regular readers of these journals will know, our evening reading and discussion. Thus, even though she and I both often read on our own, her much more than me over the last five years or so, I so associated reading with our community of two, our discussions and our enjoyment of each others intellectual company that, after her death, it was hard for me to read on my own in any way, let alone the way I used to devour books on my own, aside from our shared bookishness. Except for rereading Dancing with Rose (which I note, wryly, has been renamed by its former subtitle in its newest paperback edition, probably because it wasn't selling well enough under its original title and someone thought this was because the word "Alzheimer's" wasn't prominent enough; in addition, the original title refers to a brief episode which wasn't developed into a particularly book-defining moment; it has, also, by the way, been re-paged within her website) in order to review it, which I considered a sacred duty, and reading Nothing to Be Frightened Of and one chapter in The Tibetan Book of Living and Dying, both of which I considered essential to my grieving process, I would read other books, articles in magazines, even newspaper stories, until I crossed a word, phrase, sentence or paragraph that I knew would pique my mother's interest and curiosity, then I'd put the piece aside and physically turn away from it, not even bothering to mark my place in it.
    Thus, I didn't read the January and February selections of the book club. I mentioned, as well, at the meeting marking my return, that I couldn't yet read, although I gave no explanation for why. I think everyone understood, as, when I stopped attending the book club some years ago news traveled fast as to why I chose to forgo the meetings. One of the members, though, mentioned that I would probably find myself reading again, soon, as the March selection, Ken Follet's The Pillars of the Earth was a type of "summer reading" novel that so drew one into the story and required so little thought that I probably wouldn't be able to put it down. She was right. I picked up the book two weeks ago. I finished it two days later. It is an historical adventure novel with lots of time-specific description that I found an easy read, highly entertaining and that my mother would have loved. When I realized I was imagining my mother reading over my shoulder I wavered, but the story was so well crafted (too well crafted, really, rather like a structure built of Legos, which can become tiring after the initial awe wears off) and so relentlessly paced that I advanced from wading to swimming within the first couple of chapters. About a quarter of the way through I decided to read passages aloud that I knew would particularly delight my mother. This worked splendidly, although it startled the cats, who are used to conversation being directed either at them or at my mother, who is no longer here, thus, they weren't sure why in the hell I was talking to no one. Once I'd finished the book, I immediately yearned for something with substantially more meat than the books the book club has been lately reading. I found one such book among the books I'd collected throughout the last several years as grist for my mother's and my evening reading sessions, although we hadn't gotten around to this one, The Age of American Unreason by Susan Jacoby. While The Pillars of the Earth is like eating chips instead of dinner, tasty but not something in which I'd want to regularly indulge, The Age of American Unreason is a tasteful, nutritious, energizing meal.
    I've also reclaimed my love affair with Book Darts, standard book marks, highlighters and my preference for writing notes in the margins of books. I'm visiting the library at least once a week, now, to apprise myself of "New Arrivals" and intermittently research. I'm culling through my stacks of books and pulling out those I want to read again or read for the first time (it's astonishing how many books I bought for Mom and I to read to which we either never got around or put aside, once we "broke the binding" in favor of something that flirted more seductively with us). It feels good. Really good.
    Do I feel my mother's approval from beyond patting me on the back for besting the obstacle to reading that her death inadvertently put in my way? No. I like imagining that she's reading over my shoulder, as much as I like imagining what that entity formerly existing as the woman who was, among other aspects, my mother, would think of anything happening in my life, her life, our life, the lives of her loved ones, relatives and acquaintances and the world in general. I prefer, though, to think that if anything of a being does exist and continue after death, gathering information and treating the intellect are processes completely alien to anything with which we who are living are familiar, since our equipment would be, well, different, to say the least. What's the use of life after death if it doesn't imply adventures unimaginable to those of us in this existence?
    In the meantime, I'm noticing that since I've begun reading, again, I've also transferred back to the futon couch for night sleep. I'm not sure what the connection is but I think it may have something to do with my continued tendency to connect reading with Mom's and my shared interest in it. Maybe, while I'm reestablishing myself on my solitary (which, actually, considering her and my shared reading history, was never quite that solitary) reading track, it's important for me to fully consider our shared reading experiences as I attempt to invent and reinvent my own.
    Later...after I read some more...

Watch this. Dedicated to Toots.

2009-03-14T07:45:00.010-07:00

    Thanks to Jessica Knapp and her The Good Death online journal for bringing this to my attention. Although I did not lose a child, I lost...and can relate...anyone who has lost, I think, can relate...
    ...enough said.
    Later.
P.S.:  If you have trouble viewing this video, let me know, through comment or email. There were two choices of scripts, standard and premium. I chose the premium script but can switch, if necessary.

Announcing Palliative Care Grand Rounds, Vol. 1, Issue 2

2009-03-04T11:09:00.002-07:00

    For obvious reasons, I think, Palliative Care Grand Rounds carnival, that brings together bloggers who address palliative care medicine, hospice, death and all related areas, has captured my interest. Volume 1, Issue 2 debuted today at Dethmama Chronicles. I'm just beginning to work my way through it but a cursory read through promises lots posts that address end-of-life and infirm-life issues from a variety of perspectives for anyone who has ever wondered about life from the can-we-just-get-through-this-in-relative-comfort perspective; which is just about everyone. One of my posts is included, but, believe me, it's only one of many intriguing posts. In addition, it's hosted, this month, by a sweetly acerbic pug. One subject in particular caught my eye: a couple of posts about twittering, something I haven't yet tried and am only barely following, and then only if it's easy, like, for instance, if I can read people's twitter posts as an adjunct to their blog. Both of these posts have given me a sense of the importance of twittering...so, you know, maybe I'll consider using it...maybe not, but at least I'm informed, now.
    Have at it, people.
    Later.

The taxes part of Death Business is done...

2009-03-01T23:36:00.002-07:00

...finished, my part of it, anyway, today, and sent, as well. Once I'd put together everything Mom's CPA will need I realized I was ready to get it out the door. The FedEx satellite office close to my home keeps Sunday hours, glory be to all messenger gods, and collect for Monday travel.
    Although I still have much death business ahead of me, this was definitely the most harrowing part, as it included not only compiling Mom's regular income tax documentation, which is actually easy, but evaluating her estate for (possible) tax purposes. Chances are none will be levied against her estate, but its worth needed to be evaluated in order to make that determination. I had too little time to go through everything piece by piece, except that stuff which had significant value. That, in itself, was frustrating. I would have liked to have been able to spend several months combining the evaluation and sorting processes, but, you know, if you die at the end of the year you don't give your survivors enough time to take the leisurely route. I suppose I could have hired an estate evaluator to go through everything but, frankly, I didn't want anyone touching all her stuff before I got to it and, as well, I wanted to be involved in the process of evaluation. I was surprised at how much information I was able to get online, especially for what I formerly thought were obscure pieces of jewelry, Asian furniture and dinner ware that she and my Dad had purchased overseas. Turns out, many of the items I thought were obscure were not, at all. That, in itself, was interesting.
    The hard part was confronting the waves of memories, always at high tide, but not having the time to pay them proper attention and thus finding myself flung ashore, over and over and over.
    Ironically, many of the items to which I assigned monetary value will actually be given away, to relatives, friends and charities. One hope I have is to locate a charity, here, that gives items directly to those who need them, for free, rather than selling them in a discount store. If our community is too small for such an organized effort, I'm hoping I'll be able to find out about some location visited by the homeless and indigent where I can simply leave the items and allow them to be distributed by chance. I love the idea of just leaving things for people.
    I feel calmer, now, about conducting the rest of the necessary death business. An effort here, an effort there, day by day, without anxiety or defensiveness and I should be able to get most of it done without anxiety. My brain is still fairly muddled. I try to keep lists of duties as I think of them, then I lose track of the lists. But, you know, I'm finding that if I am honest about the cause of the what may appear to be delays, primarily my reaction to Mom's death, people easily dig into their memories of similar circumstances and are sympathetic. It's heartening to experience others' reactions to my own difficulties.
    So, I feel as though I've turned a corner; an obtuse, corner, but a corner, none the less.
    Later.

"I'll never write about this online,"...

2009-02-27T13:26:00.002-07:00

...I tell my sister, and as soon as I utter those words, just as happens as soon as I think them (and, believe me, I think them a lot), I know I will have to write about this online.
    The subject of my embarrassment? A movie about which I'm sure most of you have heard, if not viewed, City of Angels. Mom and I watched this movie a long, long time ago. It's not a part of "our" (I put that in parentheses because, as of a few days ago, it's become a part of "my") movie collection. As Roger Ebert mentions in his review of the movie (linked to the name of the movie, above), it's a knock off of an earlier movie, Wings of Desire. Both movies haunt me, although to different degrees. Both movies are filled with yearning, although the yearning is handled with much less glibness and sentimentality in the older version. I've seen both, so had Mom. I loved the older one and remembered, with embarrassed fondness, the newer one. Mom's preference was for the newer one, probably because it's easier to look at; it's brighter and more colorful throughout the entire movie. The difference that led me to acquire a copy of the newer version is that I was able to easily and very cheaply purchase it about a week ago when I found myself remembering it and needing to watch it. Well, not the whole thing, although I did watch the entire movie when it appeared on a TV channel at the same time I hankered for it. What I found myself needing to do was to watch all the scenes featuring primarily or exclusively the angels over and over and over...
    It's not that I believe in angels, although, on the level of believing in supernatural beings, well, I have my irrational moments, many, in fact. Since I can remember I've felt "protected", which I know I've mentioned occasionally in this journal. It's an unreasonable, capricious feeling. I don't even know from what I'm "protected", frankly, because plenty of things have happened to me that, well, if I am, indeed, protected, you'd think they wouldn't have happened. I've occasionally mentioned this "protection" to people, when I'm trying to convince people not to worry about me or about themselves when they are in my presence, but I don't mention it nearly as often as I feel it. Almost two decades ago, though, I was startled one day when I was at a local car insurance company office paying my bi-yearly bill and reviewing my coverage. I sat across an officious desk from a man I'd never met and would never again meet. He was in a suit and tie, I was in an acceptably appointed work outfit. We were in the middle of a coverage by coverage examination of my policy, deciding what items to raise, lower and keep retain. Suddenly the man raised his head, focused behind me and announced, "You have two guardians. Did you know that? Oh, wait a minute, there's another. Make that three."
    I was stunned. I didn't respond immediately. When I finally recovered my wits I said, "Oh. Thank you for telling me. I've suspected for years that I'm 'protected', but, you know, I had no idea about the specifics."
    "You're welcome," he said. We continued with our discussion of my auto insurance coverage.
    Truth is, I still don't think of my "protection" in terms of supernatural, trifold guardianship. I don't even think of it in terms of beings. I can't actually define how I think of it, since, when I think of it, it has to do with feeling, not linguistics.
    Anyway, back to the movie. The first couple of times I watched selected angel scenes of the movie, I didn't think about why viewing them comforted me, I just luxuriated in them, sometimes with the sound off. When I began to think about why I was glued to these scenes the first thing that came to mind was the panoramic perspective of most of my chosen scenes; the opening scenes of the movie; the shore scenes; the from-a-great-height shots of various locations (some shots of which do not include angels but suggest an angelic perspective). These scenes reminded me of many more scenes in the Wings of Desire movie, which, while savoring my memories, led me to decide to rent that video as soon as possible (which means, as soon as I return the videos I now have)...I haven't purchased it because the City of Angels video is far, far cheaper than used copies of Wings of Desire, which is no longer in official circulation.
    I'm thinking, now, that my current addiction to these scenes has something to do with a developing need to lift myself out of my grief doldrums and replace myself in an omniscient perspective. I'm thinking this perspective will make it easier for me to negotiate life without Mom, the thought of which continues to paralyze me, at awkward, inopportune moments, with grief and yearning. For reasons I haven't delineated, nothing else is working for me: Not expressions of sympathetic, empathetic or compassionate sorrow; not reminders that my experience of grief is universal and a part of being human; not stories that insist on placing my loved one (and other dead ones) "someplace else" and somehow aware of me, even though I independently indulge myself in such stories; not occasional monologues which I imagine to be dialogues directed toward Mom and "the spirits" of others I know who've died; certainly not episodes of Touched by an Angel, which I haven't been able to watch since Mom died.
    So, you know, I don't think it's the idea of angels that's captivating me about the above mentioned movie and my memories of the original version. I think it's the perspective which, despite the flaws of the newer version, and the love story, which does nothing for me, is well and achingly portrayed by the cinematography and set design.
    Whatever it is, I still find it embarrassing that I will, this afternoon, at some point when I'm involved in an innocuous death business task and unexpectedly overcome by grief, switch on the DVD player and expertly select (I now have their sequence numbers memorized) scenes from City of Angels in order to jump-start me out of temporary emotional paralysis.
    It's true, I guess: Do whatever it takes to get you through The Night. It's also true: Being human? Too, too weird.
    Later.

Here's a great Life Story...

2009-02-27T11:49:00.003-07:00

...a companion to the Death Story linked in the immediately previous post, written and produced by the same person who is responsible for the video (also linked in the immediately previous post) You're Going to Die, timothy furstnau. Although this Life Story is not an audio/video, it's tone is so similar to You're Going to Die that as, I read this project (link to timothy furstnau's selected projects), I was able, without effort, to imagine it being narrated by Vito Acconci. Just as timothy furstnau's Death Story made me feel, well, "good" wouldn't be the right word, probably "copacetic" would be better, about Death, this story makes me feel more accepting of life than usual.
Later.

The best Death Story I've heard...

2009-02-24T13:37:00.001-07:00

...can be found at the end of this post at The Good Death. Read the entire post (the video appears at the end), and, if you have the time and further interest, read the Scientific American article cited and linked at the beginning of the post. It explains why even the most "extinctivist" among us have trouble thinking in terms of extinction. You might also want to read Dr. Christian Sinclair's reactions (also cited and linked in the aforementioned post) to the video in his post about it at Pallimed. He mentions, too, who was involved in the creation of the video.
    Speaking of which, I've been tardy, and I'm now being apologetic, about forgetting to add Pallimed to my list, to the right, of Honorable Hospice & Death Blogs. I'm correcting this problem now. I've "tasted", with delight, all three of its editions (I think there are only three), all of which I list, since it's hard to tell, going into one, that the others exist. I don't get back to them as often as I think I'd like, but, these days, I don't get anywhere, on the web or off, as often as I think I'd like. Not sure why, since my previous reason for not getting around much is dead, but I'm not in the mood to parse that one, right now. Anyway, I've spot read, and highly recommend, all three editions of this series of blogs. I count six official contributors, all top notch thinkers and writers, and the "staff" considers readers to be contributors. All contributors, "staff" and readers, are excellent at directing visitors to interesting outbound sites, as well. Pallimed, is, by the way, the originator of Palliative Care Grand Rounds. Without further ado, I'll immediately add them to my appropriate links list.
    Why do I consider the video in the post mentioned in the first paragraph, up there, the best Death Story I've ever heard? Because it is, ultimately, a Life Story...a good one.
    Later.

Six Words on Elder Caregiving

2009-02-22T12:30:00.000-07:00

Mom loved me. I loved Mom.

    Surely by now you've heard of Six Word Memoirs and the companion book recently published, Not Quite What I Was Planning.

Fighting for who you are now.

    I won't waste words, here, explaining the book. I haven't read it, although I understand a copy is on its way to me. I expect to love it. To give you an idea of what the book contains, here's a link to NPR's six-word memoir experiment, in which they invited readers to publish six word memoirs in the comment section of one of their blog posts.

You needing me to want you.

    As you can see from my six-word statements interspersed throughout this post, the exercise of succinct, pithy linguistic thinking is addictive. You can't write just one.

Smell of life. Smell of death.

    That's what gave me the idea to open up a post to my readers, inviting each of you to leave comments here containing your Six Words on Elder Caregiving. I decided to narrow the scope to Elder Caregiving, since that's what I did and that's a large part of what my journals are about. So, I invite you to write and publish as many, or as few, as you want; straightforward, oblique, just go for it. If you have trouble with the comment facility, email me with your contributions and I'll set up a separate post for publishing those. It will be understood that you will retain the copyright to your work, whether you acknowledge yourself or tag your contribution as anonymous. In order to make sure you can continue to find this post as it works its way down and into the archives, I'll publish a link to it over in the Special Posts section to the right. If I end up with a separate post of emailed contributions, I'll post that location over there, too.

[no] yes no [yes] [no yes]

    Don't consider yourself out of the running (although this isn't a contest) if you think you've never been an elder caregiver. Trust me...if you've ever known An Ancient One, ever loved An Ancient One, ever been interested in An Ancient One's life, you've given care to An Ancient One.

What time is it? It's timeless.

Bereavement Observations #6: "Sleep, my child, and peace attend thee...

2009-02-20T13:26:00.002-07:00

...all through the night."
    Yesterday morning MPNC sent me a short, plaintive email telling me that she had dreamt of her Grandma during the night and had awakened several times crying. Responding to her wasn't easy because, although I dream of my mother, so far I remember only two, one of which I described here recently, and the other of which, while I remember no detail, I do recall as benign. At any rate, my dreams of her are not disturbing my sleep or my psyche.
    I thought about MPNC's life: She's a very busy young woman: College; two jobs, one of which is the sort of job in which she's never sure, once she arrives, when she'll be able to leave; a relatively new, still delicious love relationship; working for at least one charity project of which I know and, considering her, probably at least one more; incredibly social animal, as are her parents, which means she's tending to her acquaintanceships, friendships and familyships like a trooper. Essentially, then, she is so tightly scheduled that sleep is carved from what's left of her time and her contemplative time is either snipped from the ragged ends of minutes or pretty much regulated out of existence. As I thought about her life I realized that, grief being what it is, it will have its way with the bereaved, even if the bereaved has the kind of life which appears to disallow it.
    After mordantly joking that, considering how much her grandmother valued and savored sleep, she would be "horrified" to know that dreams of her were disturbing MPNC's sleep, I told her, "however," my guess is that her grief is disturbing her sleep because the only time she has to grieve is in her sleep; inferring, as well, that grief is a total organism experience...it won't confine itself to working out sub- or unconsciously, leaving the conscious mind blissfully alone. I admitted that I knew this perspective wouldn't necessarily make her experience any easier but I hoped it would bring some sense to her grief and make her personal grief experience easier to accept.
    After sending my response, I thought about my own sleeping experiences since my mother's death that might be connected to working out my grief. I realized that, despite my lack of awareness of any disturbing dreams indicating soul-wrenching subterranean work was taking place, I am most vulnerable to grief in the morning when I first awaken. I always awaken with an almost impossibly heavy heart. Within seconds of opening my eyes I am shedding tears. Although I am not the type to linger in bed and this hasn't changed, it would be accurate to describe my wake-up schedule as a slow, emotionally painful drag, including the first chore, getting myself to the bathroom to empty my bladder. There have been times when I have thought that I might crumple to the floor before making it to the toilet and have imagined myself marinating in my own urine and tears for an hour or so before being able to move enough to clean up after myself. This hasn't happened but it puts me to wondering if it's happened to anyone else. My life-long preference is to shower immediately after arising. Since my mother's death, though, immersing myself in water first thing in the morning only increases my personal waterworks...so I put off showering until later in the day. There have been days when I've put it off until the next day.
    Even though we like to speculate that it is possible to put off or avoid grieving I now believe that no matter what we think, difficult losses always will out. In conjunction with the eccentric details of our lives, grief will be expressed. Period. It may help to allow for this, many psychological theories purport such, even threaten that we can get ourselves into trouble if we don't allow for grief. If we don't, though, grief will allow itself. I'm not even sure that we need to tell ourselves anything about what to expect of grief in order to "properly" experience it, well, except to be aware that, one way or another, we'll experience it, while grief stands stoically at our side, wipes its hands and says, "That is that."
    Later.

Bereavement Observations #5: Better Live Through Chemicals

2009-02-19T22:11:00.003-07:00

    Sometime during the first week after Mom died I schized regarding my supplements, including the critical one, St. John's Wort, which I'd been taking to manage my depressive instincts (which I often enjoy but which can also run away with me if I'm not careful). When I pulled myself back onto my supplement track the week after everyone left, I decided to continue the accidental cutback of taking four 300 mg St. John's Wort pills (I'd upped the dose from three to four sometime last year after my mother was diagnosed with lung cancer) to taking three, dismissing my fragile emotional state as completely circumstantial and figuring, as well, that continuing to drop the fourth pill would be a handy cost cutting measure...the capsules aren't cheap.
    Sometime about two weeks ago, when I was having a particularly hard day dealing with my grieving self, I suddenly remembered the Wort capsule cut back. I idly wondered if cutting out that fourth capsule might have anything to do with my inability to focus on just about everything except episodes of the various Law & Order series; having extreme problems being able to conduct any kind of death business without feeling overwhelmed every time I put my hands and eyes to lists or documents; continuing to feel unusually bereft without let up, blah, blah, blah. I was reluctant, though, to reinsert the fourth pill into my daily supplement regimen without checking with someone, mainly because, well, you know, grief is one of those things you just have to work through and I was thinking maybe it wouldn't make any difference at all and, in the meantime I'd be overdosing myself and spending more money than necessary. So, I decided to contact a woman who has, in the past, helped me out with alternative healing methods and has an expert, reliable and reasoned knowledge of herbal supplements.
    She and I haven't been in touch with one another for some time. She didn't know my mother had died, nor that Mom had been diagnosed with lung cancer...nor anything that has taken place with Mom and me within the last year or so. After I explained everything and posed my question about the fourth St. John's Wort capsule, she advised me that since it hadn't been a problem before, may as well put it back but "don't expect miracles" because grief was "a different animal", it wasn't a reaction I wanted to "quash" and, anyway, even if it makes it easier for me to lift my spirits, the most minor effects wouldn't be apparent for "a couple of weeks" and it would take a "good 60 days" for my system to readjust to the higher dose as she was sure, by this time, it had adjusted to the lower dose.
    That day I decided resume my former four St. John's Wort capsule regimen. Today, two weeks later, almost to the day, sometime this afternoon, I found myself not just ripping into the death and taxes business that I've been having so much trouble handling, I'm actually wanting to do it. What a surprising and welcome change!
    So, you know, I guess the moral is, if you're bound in fresh grief and you've been taking mood altering substances through the event, it's best not to alter that schedule; at least, anyway, don't alter it down.
    Later.

Bereavement Observations #4: Taste and Death

2009-02-19T10:16:00.000-07:00

    A few days ago I made one of my favorite things to eat for the first time since my mother's death: A toasted tuna salad sandwich on sourdough bread. Making and eating it was like a small celebration of my mother's and my life and, as well, of my life without my mother. I made the tuna, mostly, the same way I did when my mother was alive, adding lots of minced yellow onion, minced fresh celery with leaves, dill pickle relish (dried between paper towels to remove as much moisture as possible...I hate wet tuna salad), celery salt, an-off-the shelf salad seasoning that I discovered many years ago and onion powder (my secret ingredient). The differences were: I didn't use nearly as much mayonnaise as I did when I made these sandwiches for my mother and me, I only require enough to glue everything in the mix together while my mother required enough to add a definitive "white glue" taste to the sandwich; I didn't add cheese to transform the sandwich into a tuna melt, which my mother loved; I used only a hint of the salt based flavorings rather than enough to change the taste of the tuna; I used Pam in the skillet to toast the bread instead of buttering the bread before placing the sandwich in the skillet because I don't like greasy toasted bread.
    As I made the sandwich and reviewed the differences between my mother's food preferences and mine I realized that, while she was alive, it was important to me to make food the way she liked while retaining tastes that I liked and that I preferred to be eating exactly what I prepared for her to eat so that, as we discussed each meal (which we always did), I was in tune with what she was describing.
    The differences between what I prepared for my mother and I to eat and what I prepare for myself to eat alone seem small but are profound:

I haven't eaten, or used, an egg since the week after my mother died;
Without trying, I am eating far less meat than we ate when she was alive, which means I am back to using meat mainly as a flavor booster rather than a main ingredient;
I use far less cheese than I did when she was alive;
It is not uncommon for me to prepare a meal for myself with nothing but vegetables...my mother would never have stood for such a meal;
I not only can handle but prefer sauces and dressings that are more acidic than my mother liked, thus, I add only a small fraction as much sugar to the salad dressings and tomato based sauces I now make than I used to add when preparing them for my mother and I;
My mother preferred noodles to rice and white rice to brown and mixed rice, thus I've been pawning half used bags of noodles and white rice off on my friends since my mother died;
I'm discovering that, although I thought the two of us consumed little enough salt, the frozen leftovers from before my mother died, through which I am still in the process of working, are a little too salty for my taste;
Now that I don't have to cook breakfast, I hardly ever eat breakfast meat, except in a BLT (if I can get really flavorful tomatoes) or as a flavor booster in beans;
I prefer, for instance, a bowl of home made chili to nachos made with generic chili; meat with steamed vegetables rather than meat with stewed vegetables.
Take-out fast food really isn't as flavorful as my mother thought; nor as I thought when we ate it together.

    It is a pleasant revelation that I am quickly reverting to the way I used to eat before I took up housekeeping with my mother and became the primary cook for two. I had forgotten, for instance, that I used my oven primarily for storage when I was living alone; that a steamer is more essential to me than a stove top. I'm also finding it peculiar that I adjusted my tastes to fit in with my mother's. I'm not sorry I did that...I think community eating requires palate adjustment and savory adventures and I'm pleased that I was not so stubborn about my own tastes that I sapped the communal aspects of eating from our shared meals. The pleasure of delighting my mother with food, too, more than made up for the food compromises I made during our companionship. Now that I can eat the way I like, though, I look forward to, rather than dread, celebratory communal meals that please a variety of palates.
    If eating is possible at the Elsewhere Bar, I suspect that my mother, too, is reveling in some of her old favorites that she hadn't eaten for years since I took over the cooking. I imagine the first meal she ordered was a baloney, ham and yellow cheese sandwich on white Wonderbread, slathered with Sandwich Spread and Miracle Whip and margarine with several Bread & Butter pickles squeezed between the layers, accompanied with Cheetos (just leave the bag here, please) and, of course, dessert: Several handfuls of Hershey's Almond Kisses.
    Later.

Re-correction!

2009-02-16T19:22:00.000-07:00

    Regarding this post, make that "hospice grief counselor". Damn, and it was clearly written right in front of me as I typed that post!
    Where is my mind, these days?!?!
    Don't answer that.
    Later.

Bereavement Observations #3: Dreams of the Dead

2009-02-16T19:16:00.001-07:00

    About a week ago I awoke out of a curious dream. I don't remember all of it, but what stays with me is that my mother had been resurrected and she and I were discussing the details of having to announce to the rest of our world that she had come back to life.
    There was no question but what she had died, we were agreed on this. She remembered having died. I remembered her having died. She looked slightly different than she actually did over the last few years: Her skin was smoother than before (something that would have pleased her, I'm sure, since she was bothered, for years, by her early, prodigious wrinkling, a physical trait inherited from her mother), for instance, and she appeared to have lost some weight. She did not, however, look younger. Her hair was short, thin and white; she was dotted with the "liver spots" which so often fascinated her. Her usual features, though, were exactly as they had been at her death.
    She was not sitting in her rocker but, rather, at our dinette table. Further, she was not facing the table, as was her pre-death wont, but was perpendicular to the table, facing me. She was relaxed and appeared to be much more mobile than she had been in some years. She had no idea how it was that she had managed to return from the dead but she was not concerned about how or why it had happened.
    As we discussed the difficulty and absurdity of convincing people that she had returned from the dead, she opened her arms and said, matter of factly, "Well, here I am. That's going to be hard to dispute."
    I agreed, and laughed.
    We set upon listing notifications that needed to be made: Changing her tax profile for last year, for instance; retrieving death certificates that had already been sent. We both agreed that it was serendipitous that I hadn't completed much death business at that point.
    "Do you suppose," I remember her musing as she tapped the table with the tip of her right index finger, a habitual tic of hers when considering solutions to problems, "there is a certificate that covers this type of circumstance?"
    That's when I awoke.
    Later.

Bereavement Observations #2: Comforting Embraces

2009-02-16T18:52:00.001-07:00

A couple days ago I finally figured out, to my satisfaction, anyway, the attraction for me of sleeping on the couch in the living room. When I settle onto the couch for sleep, because the couch (left folded as a couch, not opened into full futon position) has a back as well as a "bed" and because it is located in the part of the house in which the majority of Mom's and my living took place, I feel as though I am being embraced by the couch and by this home when I sleep on it. In addition, the couch affords far less room for sleep than my bedding; thus, the cats, who always sleep with me, sleep either on top of me or so close to me that it is hard to tell where I end and a cat begins. They become a part of the embrace I seem to need, right now, as I sleep. Physically, sleeping on my bed, either in my room or in the living room, is far more comfortable for me and allows for a much more restful sleep. After one or two nights of those arrangements, though, I find myself migrating back to the couch. Perhaps, in the weeks to come, I will find my need for a physically restful sleep more important than a need to be comforted while I sleep. In the meantime, though, the couch, in the living room, with the cats, provides me with what I really need when I sleep: A sense of being protected and nurtured during what feels like this onslaught of mortality.

Bereavement Observations #1: "Only [death] can break your heart..."

2009-02-16T18:34:00.003-07:00

...*
    The site to which I've linked the words in the immediately previous post has an interesting paragraph in this section that states: "You may start to feel better in small ways in about six weeks." It goes on to say, "...though that grief takes its own time." This is certainly true in my case. As far as I can tell, as well, I haven't even begun to "reorganize [my] life around [my] loss." Maybe I'm just stubborn, but "plans for the future", including those I blithely made when my mother was alive (my oft mentioned list of "Things to Do when My Mother Dies" continue to seem presently moot.
    Oddly, about a month ago I was much more gung ho on "making plans" than I am now. A month ago I was able to envision a future, short and long term. I am no longer able to do this. As I mentioned to my nephew recently, one of my inherent characteristics is brooding. As well, I tend to ignore the overwhelmingly negative connotations of "brooding" and consider, instead, that when I am brooding I am accomplishing the same task as a hen sitting on eggs...I'm providing an optimum environment for hatching. Maybe I didn't do enough brooding a month ago and am getting around to it now. I'm not sure. What I do know is that, within the last month, the reality of death, not just my mother's death but death, in general, especially as it encroaches on the lives of those of us living through the deaths of loved ones, is what has me awed and dumbstruck. I am astonished that, through all the deaths I've experienced, I've never experienced the deaths of others as a capitalized Obstacle. My mother's death has placed Death as An Obstacle squarely in front of me and it is the hardest part of this experience of loss with which I'm having to contend. It is impossible to ignore or sidestep. Even as I attempt to continue normal activities, without warning The Obstacle looms in front of me at the most inconvenient of times and blocks me until I figure yet another way to get through it, or, perhaps more accurately, until I surrender and let The Obstacle move through me. The first couple of times I had this experience I thought, once I'd permitted The Obstacle passage, "Ah, well, that's taken care of." Now, though, I know that The Obstacle requires several pass-throughs and isn't yet satisfied that I have come to terms with it. I don't blame it. I haven't. I assume I will, but I don't have any idea how long this will take. I assume, as well, that being confronted by The Obstacle will happen less and less frequently...but, at the moment, the frequency of confrontation seems not to have abated.
    Later.

*  Thanks, and apologies, to you, Neil Young, for this song.

Bereavement Definitions

2009-02-16T18:27:00.002-07:00

Much of the following material can be easily accessed on the web, but I'm so fascinated with the terminology of bereavement that I've decided to post them, here. Clear explanations are available at the About.com links listed in this post. However, I found clear explanations that I prefer at an alternate site, as well. I'll attach the appropriate links to the words.

Grief: Reaction to a loss.
Mourning: Process of adapting to a loss, distinguished by action (either internal or external) and often influenced by societal and cultural dictates.
Bereavement: The state of having experienced a loss, which includes the loss event, grief and mourning.

Later.

Correction Noted!

2009-02-16T13:22:00.002-07:00

I've just been informed that the person to whom I've been referring as "Hospice Chaplain" is actually the "Hospice Bereavement Counselor". Different titles imply different duties, different client expectations and different responses, so the correction is not insignificant. The one thing I don't want to do is pass misleading information on to people who are and/or will become involved with hospices through the ends of their or their loved one's lives.
Later. [I've noticed, lately, I've been dropping this usual last paragraph from my posts. I'm not sure why but, when I remember it, it sounds right...when I don't, it sounds right.]

My Very Dear Prescott Friend called me this morning...

2009-02-16T13:08:00.001-07:00

...to tell me there's a good chance that she wouldn't be able to make the next book club meeting a week from today. She'd volunteered to provide refreshments and asked if I could deliver them to the meeting. Nothing fancy: A bottle of white wine, a bottle of organic lemonade, some cookies. Because there is an ongoing pipe replacement/road reconstruction project going on in her area of Prescott and the "as the crow flies" route to her home has been replaced by a confusing detour (all detours in Prescott are confusing, frankly) she even assured me that she could deliver the refreshments to my house in order to save me the trial of trying to get to hers. Assuming she's right and she won't be able to make the meeting, one way or another, between us we'll get the refreshments to the meeting.
    She isn't sure she'll be able to attend because her husband is having hip replacement surgery on a severely arthritic hip Wednesday and will be recuperating next Monday. She hasn't made an absolute decision to forgo the meeting but pre-surgical conditions at her home, at the moment, are such that she expects she'll not be attending. The surgeon has instructed that, as of late last week, he engage in as little movement as possible, which he was attempting, previous to these instructions, simply because he is an "ox" of a man, hates not being able to move independently and has insisted on moving through the pain.
    Thus, their household has been thrown into the contingency of intense needs caregiving. My friend is expecting one daughter's family to arrive tomorrow and another's to arrive Thursday to help out, emotionally and physically, through the operation, but she and her husband are, at this moment, on their own and will be, again, sometime next Saturday when family leaves.
    Both my friend and her husband are in their 70s. Both are hale and hearty, physically and mentally very active. They take excellent care of themselves. If you were to meet them you'd swear they are in their 60s. As well, their history includes raising several children together and hosting her mother in their home until her mother's death some decades ago. Neither of them is unfamiliar with intense needs caregiving but it's always been at least the two of them performing caregiving, sometimes more, when children were at home. This time, too, her husband is nervously unfamiliar with being an intense needs care recipient, which makes it hard on both of them. Although there is no reason to believe that my friend's husband's convalescence and recovery will not be short and successful, this period and the period immediately after his recovery is extremely demanding on both of them.
    "I understand your decision, now, to stop attending the book club meetings," my friend told me this morning. She repeated several versions of this before we ended our conversation. In between repeats she related what she's been going through since late last week. "It's not that it's physically demanding," she said. I believe her, as she's strong, so is her husband and she tells me he is allowed to tend to certain personal chores with little or no help from her. "It's everything else. I wasn't aware how much he pitched in here until he couldn't. I'm doing everything. There just isn't time, anymore, for me to do the things I usually do. It's the mental aspect of it. The attention. He calls me several times an hour to do things that he would normally do for himself. I'm constantly listening, listening, listening. My attention is exclusively focused on him." She doesn't sound like she minds. She knows this is necessary and she's a cheerily accepting sort. She's just surprised at how much the tasks of and the adjustment to intense needs caregiving takes, especially when you're the only one in the hot seat. "It doesn't matter what I'm doing," she tells me. Whether she's running an errand (often a weekly errand that he used to run) or at home, her attention is focused on him, listening for his needs, anticipating them...mind you, he is not a particularly demanding man and, as well, doesn't like to be waited on, but, he's not in a position to do much for himself, either, right now.
    It was important for her to compare notes with me, now that she, as she admitted, "gets it", about what being a lone intense needs caregiver involves, how it affects a person's life and why someone who is an intense needs caregiver makes certain decisions, which just about every piece of caregiving literature derides, to, in effect, make the needs of someone else's life one's own life-needs. She admitted to me that even if her husband's convalescence goes well and he feels competent to be left alone next Monday night for three or so hours, she may not attend the meeting, anyway, because listening at home is easier than listening away from home.
    "I will never, ever, again, criticize any decision you ever made about what to continue and what to stop while you were taking care of your mother."
    "It's not easy," I told her, "but, what makes it hard isn't necessarily the choices you make on behalf of caregiving, it's that your circle of friends and family and the experts, too, are constantly at you to 'take care of yourself', 'do things for yourself', 'make sure you don't lose yourself', without realizing that their advice would have you living two lives, while the decisions you make that they criticize actually make it possible for you to live just a little over one life, which is about all anyone can handle. Everyone does it in the way that suits them best. Lots of times, those ways don't agree with everyone else's assessments. So, you block out the peanut gallery and do what you have to do."
    "I know," she said. "I see that, now."
    "Anything you need," I told her, "if you need to me to run errands, help you out at your house, figure out how to negotiate the current detour [because the detour changes, sometimes incrementally, sometimes drastically, from day to day], listen and commiserate, understand your decisions about what you decide to do and not to do, anything, call. I'll keep in touch with you, too." I'm sure she'll ask, if she needs anything. She's not afraid to ask. I was never afraid to ask, either. I just, finally, got tired of being turned down, most of the time; of receiving offers of help I didn't need while getting refusals of help I did need.
    And, you know, I get it, too, and I'll be there for her. Whatever she needs. Whatever she needs.
    Yes, it was a relief to finally receive validation on how I chose to live my life while being my mother's companion and caregiver. More important, though, was the validation of my belief that we have a long, long way to go before we learn how to support our intense needs caregivers to the Ancient and Infirm. Millions more of us will be called to the task and find ourselves disproving and, finally, rewriting, the literature of the day about what it takes to give this kind of care, what advice to give to the caregiver, who to advise and how to remold our society so that appropriate support is in place for everyone who is called to intense needs caregiving. We will, I suspect, realize that those who become involved in intense needs caregiving tend to find, on their own, the advice they need relating specifically to how to give care. Those sources are in place and easy to access. The people who need to be advised are those watching intense needs caregivers and telling them to take, rather than supporting them in their choices on how to take, care of themselves. When those books are written, it will be obvious that we all finally get it.

I want to mention...

2009-02-12T12:59:00.003-07:00

...one of the journals to which I link in the Honorable Alzheimer's Blogs section to the right, Alzheimers - The Carer's View has picked up after a fairly long absence. Although her care recipient, her mother, died some time ago, she decided to continue filling in the details of her story, including insightful observations and ruminations. It also contains some interesting short essays on circumstances encountered when caring for someone and some evocative posts on how her feelings about her mother and caring for her evolved through and after her journey. I'm ashamed to admit that, after a few unproductive visits, I assumed that she'd decided not to continue her blog, so I didn't get back to it until some days ago. Good reading, definitely worth a second look. For those of you who remember what seemed like her last post, she actually picked up the threads in earnest a few months later and continues to this day.
Later.

If it wasn't obvious, last night was one of my Broken Sleep nights.

2009-02-12T12:42:00.001-07:00

It wasn't because of grieving, or anything connected to the effect on me of my mother's death. Because yesterday was an unusually physically strenuous day and I haven't had one of those, well, since December 8, 2008, at 0709, after relaxing and eating dinner I decided to pop a significant dose of ibuprofen to ward off any shoulder and back strain I might have provoked shoveling snow and take a nip-it-in-the-bud nap. I awoke a couple of hours before midnight, channel surfed for a bit, read some (I'm trying hard to get through our next book club book, which is entertaining but not particularly interesting), took a short walk in the amazing snow-reflected light of the 3/4 waning moon, wrote the immediately previous post, then, still full of energy and feeling good, decided to figure out if there was another way to access information about the dying experience on the internet.
I started simple, googling "dying". Bingo! It seems that the search terms I used which led to writing this post was not the most productive phrase. "Dying" led me to "dying process", which yielded much better results. Although not exhaustive, since I'm pretty well satisfied with my results from reading Chapter Fifteen of The Tibetan Book of Living and Dying, I'm listing some links that might be of interest to those of my readers who are approaching, encompassed by or surviving the experience of accompanying someone through dying. The following links are not, by the way, in any particular order:

The Zen Hospice Project has an interesting page which summarizes much of what the The Tibetan Book of Living and Dying particularizes.
Although the home page for the website Crossing the Creek is chiefly an advertisement and ordering site for the author's book, he includes two essays from the perspective of an outspoken, highly experienced Hospice RN.
- The first essay explains why even the most experienced Hospice RNs are sometimes reluctant to talk about their experiences with the dying and what the differences in dying perspective are between those of us who confront the dying rarely throughout our lives and those who specialize in working with the dying.
- The second essay is a short, sweet statement on behalf of the value of negative emotions, most importantly the fear of death.
Dear Death (which no longer has an index page so the aforementioned will have to do) is a fascinating site that covers death from a wide variety of angles. It's interesting to click into several pages listed along the left side of each page. The page that introduced me to the site, though, was an acutely clinical review of death, which, curiously, closely follows the Tibetan Buddhist description of death about which I wrote. Check out the site's favicon.
The author of this essay which appears at Toward the Light is a self-professed medium. This site exists overwhelmingly to support and discuss N[ear]D[eath]E[xperiences]s. However, the essay to which I linked, while containing a description of the author's NDE, also gives some very interesting insight into what it is like to approach death, states of mind that become available to someone who is dying and suggestions for enhancing the environment of the dying one to support these processes. Although written from the point of view of someone who gives plenty of spiritual weight to the process of dying, it also contains intriguing practical insights into the beginning of the journey.
Dying Man's Daily Journal is written by a man who has been aware that he is dying for some years. I know, sounds absurd, but this journal, I think, is of interest because this man spends each day very aware of being on the other end of life, something most of us rarely do. He almost never mentions death, but it is obvious that, having been labeled as "dying" due to certain physical problems, he cherishes life more acutely than before his prognosis and spends daily time contemplating what life means when lived in the knowledge of ...the valley of the shadow of death...
Here is yet another page from another Buddhist Hospice Site, this time in New Zealand. It is a fine, sympathetic, highly readable elaboration of the more esoterically technical passages I quoted three posts previously.
About.com offers a surprisingly varied area regarding the dying process, all of which is available progressively from this page, although I was introduced to the area through this page. This section is a fairly thorough, practical explanation of what one caring for a dying person will confront, what the dying one is experiencing when certain symptoms occur and what palliative care can be rendered, if necessary. At this site I also clicked through to a few pages on grief. I was surprised to learn from this page that the words "grief" and "mourning" harbor distinctively different technical definitions. This page gives a brief but fairly complete overview of the grief process. Much to my amusement, even though the grief pages stress that grief is an individual experience, there is a section entitled "Abnormal Grief". This section, though, doesn't assert that certain types of grief are, for instance, morally wrong, but simply delineates grief experiences that surface for "only 3 to 25 percent of loss survivors". It's an intriguing section to read.
Finally, I was surprised (although I probably shouldn't have been) to discover that the search phrase I entered led not only to information on the human process of dying but, as well, the process of pets dying. I clicked into a couple because I am good friends with someone who provided compassionate, at home hospice care for his dying cat and, as she has recently been relating in her journal and her twitter account, Dethmama is providing hospice care for her beloved pug, Opal. Truth is, the very few sites I clicked into were nothing compared to the direct experiences to which I have been and am privy, above, and through The Yellow Wallpaper, specifically these one, two, three posts. One site discovered through my search, though, offered a poignant tale of a lesson in grief I thought some of you might enjoy learned from the young companion of a beloved dog euthanized by the vet who wrote the essay.

Although I'm sure there are many more resources on death, dying and grieving in cyberspace, I don't think I'll be actively searching for them, anymore. I'm satisfied, now, with what I've found and am confident that, if you're looking for cyber information and support, the suggestions and resources in this post and to the right in the Honorable Hospice & Death Blogs will start you on a fruitful search.

I spent the bulk of the light part of the day, today (make that yesterday, officially), shoveling snow.

2009-02-12T03:04:00.000-07:00

    Aside from being difficult and invigorating, it brought me in closer touch with one of my neighbors to my southwest, across the street. The neighbor and I have occasionally, over the years, greeted one another and exchanged a few words when simultaneously collecting our mail. Our front windows afford a direct view of the front of her house, her property and her carport. Mom and I spent a fair amount of time noticing when she was out (and, when she wasn't), commenting on her company and the presence of maintenance vehicles, discussing the landscaping improvements she applied to her property, trying to remember what her name was...typical front porch stuff but, since we weren't on a front porch but behind walls, I rarely interacted with her, my mother only once when she was walkering our driveway and our neighbor was retrieving her mail (her mailbox is on our side of the street). On the few occasions when our neighbor and I ran into each other we exchanged names, although, from meeting to meeting we never remembered the other's name. She had noticed Mom and knew that we lived together and that I cared for her. One visit occurred because we both noticed we'd gotten other people's mail, we met in the middle (so to speak) while checking for the appropriate houses then, when neither of us found anyone home to receive misdelivered mail, discussed the advisability of slipping mail into the correct mailbox. We decided against it because, as she pointed out, it is against the law to tamper with anyone's mailbox.
    Today while I was in the middle of shoveling my extremely long driveway, we met again as our mail deliverer worked her truck through the slush left by the snow plow along the sides of our street. She, the mail lady and I conversed for a fair amount of time. I realized that I hadn't gotten a chance to let either know that Mom had died and I knew they would both be interested. I thought I would be okay relating this information but found myself choking up as I informed them. Both were sympathetic and comforting.
    After the mail lady headed up the street, my across-the-street neighbor and I continued chatting about the amazing two and a half day snow storm we'd just had, the difficulties of delivering mail in this part of town (the mail lady told us that she'd gone through three sets of chains, yesterday) how clear and bright it was today, how we both hoped the sun, if nothing else, would clear most of this overwhelming batch of snow away before our next predicted snowfall, this Saturday, and how beneficial it is to shovel snow off one's driveway before another snowfall. She had, as well, been watching the serial spin-outs two nights ago occurring between both of our houses and we laughed about some of the antics some of the drivers tried to get themselves further up the hill before finally giving up and swirling into my driveway.
    In due time I went back to my shoveling and she returned to her home. She has a shorter, steeper driveway than mine and owns an old Toyota Corolla that, I knew, would falter on the level of snow blanketing her driveway if she needed to get anywhere. Although, overtly, she appears determined and physically able, there is something frail about her. I considered that she might appreciate having her driveway shoveled, in case she wanted to make a supply trip or two before our next snowstorm. I speared my snow shovel upright in a snow bank and turned to head across the street to her house to ask her. She was heading across the street toward me.
    "You said you're strong, is that right?" she asked pumping her arms at the elbow, Popeye style.
    "Yes. Taking care of my Mom really developed my strength."
    "Could I hire you to shovel my driveway?"
    I laughed. "I was just headed over there to ask you if you wanted me to shovel your driveway."
    I surveyed her driveway, determined that it would take about a half hour to clear and started to work. She stayed outside, bundled up in a lawn chair. We chatted as I worked.
    She has a disability, one of those that isn't apparent on the surface but affects her joints and makes it difficult for her to do strenuous work, spend much time sitting in a car, etc. She is having groceries delivered tomorrow and was concerned that her delivery guy wouldn't be able to make it up her driveway, thus would give up before completing the delivery. "I tried to clear some of my driveway yesterday," she said, "but I wasn't able to do much."
    I'd seen her out there, yesterday, when I got the "bright" idea of attempting to clear my own driveway using my truck, which didn't work...I foundered the truck in a snowbank on my front lawn when I was attempting a turn to "shovel" up the drive. She had been so bundled up when she was working on her driveway, and, as well, was using a digging shovel rather than a snow shovel, that I thought one of our common neighbors had been working on her driveway.
    No, she confirmed, it had been her, and, she admitted, she hadn't done a very good job. She was amazed that it had occurred to me that she might need help. "You didn't know that I'm disabled, did you?"
    "No, I had no idea; but, since I thought someone else was working on your driveway, yesterday, I figured that clearing it was, well, not something you were prepared to do."
    During the rest of the time we talked about all kinds of things: The new president; she's a long time immigrant from Europe so we compared notes about what it's like to learn to live in the states when one is a young adult; we compared notes on the commonality of owning Toyotas and having people knock at our doors asking if our cars are for sale; the importance of being bilingual; how beautiful our area of Prescott is; how wonderful it is to live in an "old style" neighborhood.
    When I finished her driveway she again mentioned payment.
    Without thinking, I heard myself say, "You don't need to pay me. This is the neighborly thing to do. You know, for years, because I was so involved with my mom, I haven't been able to be very neighborly. Now that I can, I think it's time I started."
    As I walked back to continue working on my driveway I realized, yeah, that's right! During those years when I wasn't able to exchange neighborly favors Mom and I were, even so, the recipients of some wonderful acts of neighborliness. During years when I couldn't get to yard maintenance, my neighbor to the east, when he was weed-eating his own yard, would work his way through the eastern front of our yard. There were times when I'd put the garbage out on Tuesday night and before it was picked up the next day some health crisis would occur and Mom and I would head down to Phoenix. When we returned a few days later, some one or more of our neighbors would have pushed our emptied bins to our carport and piled our newspapers on our stoop. Our neighbor to the west, the gardener, before she died and her companion, who has no interest in gardening, fallowed out her plots, would keep us supplied with sweet, vine ripened tomatoes and spicy arugula for salads. One of our neighbors two houses down, when my mother was still driving, happened to be out one day when my mother slammed the back driver's side fender into our retaining posts while trying to back the car into our driveway. He sprinted over with a mallet and popped the dent out of the fender.
    We've never been chummy with our neighbors, here, but neighborliness in this part of the country has a distinctively independent Western edge...one with which I am, and my mother was, very comfortable. You keep a casual eye turned toward your neighbors, allow them to live in your thoughts as they do across the way, on the other side of the boulders, behind that stand of Ponderosa. If you notice they need a hand and if your hand is available, you offer it.
    I'm a little sad thinking that it is my mother's death that is allowing my hands to be more available to my neighbors, but I'm excited, too. My mother was a neighborly soul. It is from her I learned that when returning a borrowed or left-behind dish, you always return it full of something good. When we noticed that our front yard was a great place for turning around on this narrow, climbing street, we made sure all obstructions to this were pushed back. We watched with pleasure during the spring, summer and fall as walkers and cyclists stopped to rest beneath the shade of our indigenous, fast growing perfectly situated deciduous tree. We were delighted and intrigued when dog walkers lingered in our yard. We often devised subtle landscaping plans that would render our yard more inviting: A vine covered arbor close to the street for more shade; some weather proof chairs for older walkers and enough of those so that if Mom was up to it, we could sit outside and people watch; salt licks to encourage more deer visits; a couple of bridges across the wash to encourage access. We didn't get around to any of them while Mom was alive. Her neighborly spirit remains, though, and she taught me well. Now's as good a time as any to extend my hands and our hearts to our neighbors.

Come one, come all! There's a new carnival in town!

2009-02-10T14:15:00.002-07:00

You're forgiven for not noticing; that's how new it is. I stumbled across it because, much to my surprise, a post of mine was featured in the premier edition and one of my readers, the next host for the carnival, in fact, Dethmama of Dethmama Chronicles, clued me in about the presence of one of my posts. The carnival is called Palliative Care Grand Rounds. The aforetyped link will lead you to its newly established home page. This link will take you to its premier edition hosted by Christian Sinclair, MD, at Pallimed.
It's a good one, especially for those interested in, well, here, let me quote the opening paragraph to Volume 1 Issue 1:

Welcome to the inaugural edition of Palliative Care Grand Rounds, a monthly blog carnival bringing you the best and most interesting blog posts about hospice, palliative care, death and dying, grief, quality of life, communication in the medical arena, and anything else that strikes the fancy of the host that month.

    You tell me: Who doesn't that include? This month's edition is divided into four sections according to the type of blogger posting the articles. I'm continuing to work my way through the posts. It's full of curious and thought provoking information. Some tidbits: A post about how often and under what circumstances patients remember the names of doctors attending them in hospitals; what it's like to receive messages from the dead; at the moment I'm listening to a song about euthanasia.
    I recently asked Dethmama if she was planning a theme. She says, "I'm not going to have a theme for the carnival... PCGR is so new that I don't want to discourage anyone from contributing by limiting the topic. So like Christian says anything to do with death, dying grieving, caregiving, palliative/hospice, etc." The field's wide open, folks...spots available for any ride you want to offer. Keep in mind that the first edition of the carnival was constructed by hand by Dr. Sinclair, who trolled the web looking for appropriate posts. Dethmama is expecting to have to do much the same. Wouldn't it be great if she had so many submissions for the second edition that she didn't have to go looking?
    Later.

Finally! My kind of snow!

2009-02-10T13:19:00.006-07:00

    Snow started falling a day later than predicted: Saturday instead of Friday, and in fits and starts. The delay and the initial amount disappointed me. I figured, as with all the other promised snows this season, we might get a thin frosting that would ice the crumbs down then disappear in 12 hours. It snowed enough on Saturday, though, for a legitimate blanket to survive the night. Sunday morning it began in earnest, continuing through last night. I figure, judging by the thickness of the blanket against a granite boulder in the front yard, that we've gotten over eight inches, maybe even closer to ten. A month and a half after Christmas I'm finally living in a Christmas card, again. It was a gray sky snow. A branch bending snow. A sound muffling snow. A chain snow that most people here, yesterday, had to negotiate without chains. It caught my neighbors by surprise. Going-home vehicles had trouble, yesterday evening, making it past my driveway. My home is right at the point where a gentle slope becomes a determined climb. Many of the slipping cars angled themselves, with difficulty, into my driveway to gain purchase for a turn and headed back toward town. This morning an endless, thick slab of snow covers everything except cracks where the branches of evergreens, leafed and needled, have carved smooth, rounded cracks in the slab.
    Miscellaneous note: It is with some difficulty that I am using "my" to describe this house, this home, rather than "our". I'm making a conscious, labored effort, to habituate to referring to it as "my" house, "my" home. It isn't that I wish to lose the sense that it is "our" home. It will always be "our" home. But, for practical reasons, it seems to me as though, in normal conversation and thought, the concerted use of "my" might help me lose the continued sense of absence that engulfs me every time I reenter "our" home. It's one of the few structured grief therapies to which I am consenting.
    The Hospice Chaplain called yesterday. It was, again, awkward, at first, talking with her, but she is gently persistent and I so appreciate her calls that I work hard to craft a legitimate conversation. Once we warmed up our conversation lasted well over an hour. Without the more natural connection, for me, anyway, of pen to paper or fingertips to keyboard, I had more trouble, than I do writing here, telling her that grieving is, at the moment, getting harder instead of easier. She picked up on what I was trying to express, though, and helped me verbally clarify some of what I've been experiencing. The most significant aspect is that the mental fog continues without cease, muffling productive thought and action. I'm "hanging on for the ride", though, and grateful that I don't have to cut it short or interrupt it with the normally essential work of surviving. Toward the end of our conversation she congratulated me on sticking with it, regardless of the difficulty. She intimated that refusing to turn away from the grief ultimately opens one's heart (she speaks from experience on this, by the way) and often brings additional clarity. "I hope so," I told her.
    I can't remember how we got into it, but part of our conversation involved the process of dying; what it feels like, what the dying one experiences. Previous to talking to her I had assumed that it's impossible to know unless one is going through it. I tend to regard "almost dying" experiences as not legitimate death experiences, since the person who "comes back" hasn't died. As well, of course, I'm aware of the scientific explanations of what happens neurologically when one dies and how Western science has linked much of the physical deterioration of dying to the states often described in "almost dying" experiences.
    She asked me, though, if I would be interested in literature that described the process of dying from the inside out. "Yes," I said. I'm intensely curious about what my mother might have been experiencing through the hours she was dying; especially since she indicated her unusual, unexpected discomfort to me, a discomfort about which I commented, day before yesterday, after reading a post at Dethmama's journal.
    The Hospice Chaplain told me she and one of the Hospice RNs with whom I'm acquainted (the one who subbed for our regular Hospice RN when he was off) would get back to me with material references. For the meantime she mentioned The Tibetan Book of Living and Dying as one reference, talked about how she vaguely recalled that it contained a description of "dissolving of the elements". Sounds pretty esoteric, I thought, but intriguing. That, I figured, would be an easy reference to seek out, since I own a copy of it. I'd read it through some years ago but have almost no memory of the book, let alone anything specific about the process of death. Funny how you don't retain what you don't need at a particular time!
    The Hospice Chaplain also mentioned researching the internet, which was what I did first, assuming that The Tibetan Book of Living and Dying would contain less clinical explanations. The internet exercise was unproductive. Aside from snippets of "NDEs" (Near Death Experiences], versus what I label, in my mind, Approaching Death Experiences, I was only able to find two references, both of which ultimately skirted the descriptions in which I was interested. The first is a much linked to and quoted article published in October, 2007, in NewScientist that describes what, exactly, kills people under a variety of lethal circumstances. It is so prolifically quoted that, six pages into my search, various links to the article continued to overwhelm links to any other pertinent information on the web. It is so popular that an edition of The Water Cooler Diaries has been devoted to verbally summarizing the article. Although the article contains some information about what various death experiences might feel like, only one, drowning, has a fairly detailed explanation (with which my experience concurs). The rest mentions, offhandedly, statistics like seconds or minutes of viability after the lethal act and the method of oxygen deprivation, which is what kills most people. The title of the article is the exact phrase I used in my internet search, which surprised me, but the title was misleading. There is lots of interest in the death experience but not a lot of reliable information which, I suppose, is not surprising.
[Added 3/4/09 as I was reading through the post for the first time since I wrote it:  I forgot to mention, there is also a detailed description, in this article, of what it is like to die by fire.]
    The second internet resource I found is the full text of a book entitled The Natural Death Handbook. Chapter 2 contains multiple descriptions of dying folks, famous and obscure. The catch is that all the descriptions are from the outside looking in, curious but still not what I was looking for. I decided to abandon the internet.
    When I found my copy of The Tibetan Book of Living and Dying I leafed directly to the chapter entitled The Process of Dying and discovered, seven pages into the chapter, some cogent descriptions of certain physical experiences noted through the ages by Tibetan doctors and observers of the dying and the dying, themselves. Between the covers of metaphysical metaphor I found a surprisingly detailed, hauntingly physical analysis of what my mother probably experienced through her last three to four days as she was dying. It is so fascinating to me and seems so accurate that I've decided to quote pertinent passages, below, and describe how I interpret these passages using what I observed of my mother's experience of death. Since I'm not interested in challenging copyright, I'm mentioning, here, that my edition of the book is copyrighted as of 1993 by Rigpa Fellowship; I'm also invoking the copyright instructions on the opposite side of the title page which allow "brief quotations embodied in critical articles and reviews."
    Although I will be quoting the metaphysical explanations of what happens as one dies, note, also that the metaphysics is accompanied with clear explanations of physical processes. Keep in mind that much of what seems like metaphysical description to our Western sensibility is considered to be a legitimate technical vocabulary in Eastern thought, bringing to mind exact delineations of physical areas and processes. As well, the chapter lays out a specific event line. As I was reading it seemed to me that my mother's event line differed but, as I compared what I was reading with what I reported and recalled, it turns out only one event, the one hallucination she had of which I am sure, was out of sync. In cases where I have reported events as my mother experienced them in this journal I'll attempt to find and link to them. I'll quote in this color and typeface. My comments will be in my typical typeface and color.

The book prescribes a proper position for dying:
    Traditionally the position generally recommended for dying is to lie down on the right side, taking the position of "the sleeping lion," which is the posture in which Buddha died. The left hand rests on the left thigh; the right hand is placed under the chin, closing the right nostril. The legs are stretched out and very slightly bent. On the right side of the body are certain subtle channels that encourage the "karmic wind" of delusion. Lying on them in the sleeping lion's posture, and closing the right nostril, blocks these channels and facilitates a person's recognition of the luminosity when it dawns at death. It also helps the consciousness to leave the body through the aperture at the crown of the head, as all the other openings through which it could leave are blocked.
    My mother spent most of the last four days of her life in this position, but reversed. This is the position in which she slept for the last several years. Her eccentric modifications were that she did not rest her right hand on her right thigh, but tucked it under her left ear on top of her left hand. Her left nostril was often effectively blocked in this posture, either by her hands or her pillow. It was securely blocked through her last night.
    My feeling, over the last nine months of her life after discovering that she had lung cancer, the tumor being in her right lung, was that this position favored her right lung in such a way as to allow deeper breathing. Up through the last few days of her life I don't think her left lung required favoring.
    Curiously, my mother was a Leo and I often referred to her, in deference to our kitties, as an honorary cat, so I'm intrigued that the reverse of her usual sleep position is called "the sleeping lion". Also, during her last night of life, aware, from The Literature, that it is often a good idea to reposition the bedridden, we tried arranging her on her right side. She found this even more uncomfortable than her usual position and unacceptable. I'm curious to know, now, what, according to Tibetan dying theory, she was blocking by lying in the reverse of the recommended position for dying. I'll definitely be looking for this as I reread the rest of the book. I'm making a mental note, as I type, to report back, should I find anything.
Added 3/4/09 as I was reading through the post for the first time since I wrote it:  Something I've been meaning to add as I've thought about this post: I'm aware, and was hyper-aware during my mother's last days, that it is recommended by hospice/palliative care professionals to alter positions so as to prevent discomfort and bedsores. During my mother's last hours, though, trying to reposition her was physically and emotionally harrowing for her. I tried, anyway, but, as a team we were unsuccessful. At any rate, her skin was in great shape, the only bedsore she's ever developed was under the care of the hospital and rehab facilities, despite my constant oversight and reporting and help, but that had healed before she came home from her last rehab stint and, until a few days before she died, she was active enough and so well cared for that other skin conditions didn't crop up, except for her usual bruising.]

The Outer Dissolution: The Senses and The Elements
    The outer dissolution is when the senses and elements dissolve. How exactly will we experience this when we die?
    The first thing we may be aware of is how our senses cease to function. If people around our bed are talking, there will come a point where we can hear the sound of their voices but we cannot make out the words. This means that the ear consciousness has ceased to function. We look at an object in front of us, and we can only see its outline, not its details. This means that the eye consciousness has failed. And the same happens with our faculties of smell, taste and touch. When the senses are no longer fully experienced, it marks the first phase of the dissolution process.
    This post describes my mother scratching at her makeshift night stand and picking at my pants during the last three hours of her life, immediately after I awoke to medicate her again. It also describes her reaction to sound, which I now realize she may have been hearing but no longer discerning. I think the scratching and picking at things is explained by a diminishment of her ability to see clearly.
    I also find it interesting that Western medical descriptions insist that the sense of hearing is the last to go. In this description, while gross hearing may remain, "ear consciousness", which is clearly interpreted to mean the ability to discern what one is hearing and attach meaning to it, is one of the first senses to fade.
Added 3/4/09 as I was reading through the post for the first time since I wrote it:  I just realized, as I was rereading this section, that my mother's glasses lay on that makeshift night stand. I wonder, now, if she was reaching for them in an attempt to improve her ability to see; perhaps she may have had it in mind, as well, to arise, which was objectively beyond her ability by that time. I didn't think to realize this or ask her, at the time, but, at any rate, as soon as I entered the bedroom, she calmed down and appeared to want nothing but my company.]

The next four phases follow the dissolution of the elements: [of which there are five: earth, water, fire, air, space; each corresponds to various physical parts and processes; they also correlate with spiritual "parts" and processes]
Earth
    Our body begins to lose all its strength. We are drained of any energy. We cannot get up, stay upright, or hold anything. We can no longer support our head. We feel as though we are falling, sinking underground, or being crushed by a great weight. Some traditional texts say that it is as if a huge mountain were being pressed down upon us, and we were being squashed by it. We feel heavy and uncomfortable in any position. We may ask to be pulled up, to have our pillows made higher, or for the bed-covers to be taken off.
    My mother lost her physical strength two days before she died, very dramatically, during this episode of incredible pain. From that point on she was only able to uphold herself, and then only barely, for a brief period on Sunday morning when she decided she'd like to spend some time in the living room, eat a bit and watch one of her favorite Christmas movies. Even though she was sitting, it was necessary to prop her from falling to her left with several pillows of various sizes and one of her wedges strategically placed between her, the arms and the back of the wheelchair. We were both surprised at her sudden and complete loss of strength. I remember thinking that it was as though her Puppet Master had let loose of the strings attached to her waist so that she was no longer able to keep her trunk erect. Once this depletion of strength occurred, she didn't fight it. Now that I think of it, this was unusual for her on one level; it was her MO, when not feeling "up to par", to work at correcting the situation. At another level, her lack of struggle was perfectly appropriate: Once she realized (and it rarely took long for her to come to this realization) she was in the grips of a force stronger that her will, she always relented, assuming that the easiest way through a difficulty was to go with it until she emerged out the other side. [Should I capitalize that, "the other side", I briefly wonder, considering that I'm describing my mother's death? Nah, no need. When she was dying, I'm convinced she thought she was actually working her way through to "the other side"..."of this cold".]
    The reason, as well, that for most of her last night I continually tried to pull her up on the bed and place pillows further underneath her was that she indicated that she was not comfortable laying completely flat. No matter how many times I tried, though, to accomplish some elevation for her upper body, she'd slip down, and I'd try again. I attributed this, again, to that loss of Puppet Master control at her waist. It was as though she was crumbling into her lower body.
    A sensation of falling or being crushed under a heavy weight could also explain her scratching at the nightstand. There was a period, too, during her last night, when she was picking at her covers. I asked her if she wanted me to remove them. She did. I did. As I've mentioned previously, she was, indeed, "uncomfortable in any position".
Our complexion fades and a pallor sets in. Our cheeks sink, and dark stains appear on our teeth. It becomes harder to open and close our eyes. As the aggregate of form is dissolving, we become weak and frail. Our mind is agitated and delirious, but then sinks into drowsiness.
    Her complexion didn't fade, there was no pallor nor did her teeth stain until immediately after death. Her cheeks didn't sink, before or after death. When I was at her bedside her eyes didn't close until after she took her last breath, although, in the last few hours I assumed she was not focusing on anything outside of herself. For the most part she didn't display any overt agitation or delirium in her last few hours, although picking at the nightstand and my pants earlier in her last hours certainly qualifies as both. I think it's possible that my presence calmed any agitation she might have been experiencing and allowed her to accept any delirium. For much of the time I was physically in touch with her, as well, either with my feet snuggled against her belly, holding her hand, petting her, or all three at once. Whether any of this overtly registered, these may have had much to do with her lack of obvious agitation and delirium. As well, of course, she was obviously withdrawing, in what I interpreted as a fierce attempt to rally forces to breathe. She may very well have been doing "other internal things", as well.
    The only drowsiness I witnessed was the closing of her eyes each time I left the room; when I gathered medication, ice chips or collapsed for a few hours sleep much earlier in the evening. She obviously, though, wasn't sleeping, as each time I returned her eyes (rather, the one eye that I was able to see, her right eye) opened and blazed and, as well, when I awoke earlier in the morning just before medication time she was awake and working at the nightstand.
    These are signs that the earth element is withdrawing into the water element. This means that the wind related to the earth element is becoming less capable of providing a base for consciousness, and the ability of the water element is more manifest. So the "secret sign" that appears in the mind is a vision of a shimmering mirage.  [One note, here: The material in this chapter that precedes the section I'm quoting explains, fully, the relation of each element to specific physical and spiritual parts and systems. I'm not quoting these correlations, here, in order to attempt some modicum of brevity and, as well, in a concerted effort not to obviously impinge upon copyright.]
    Each element section concludes with a corresponding image that is believed (and, perhaps has been reported) to accompany the segment of the dying process one is experiencing. Although I will never know, it's intriguing for me to imagine that my mother was experiencing spontaneous imagery related to each segment of her experience. You'd think, of course, that these images might be different in different cultures, considering that the images the brain manufactures for us are based on what we witness during our lives. However, the images described in this chapter are so fundamental that I consider it possible that these may be universal visions.

Water
    We begin to lose control of our bodily fluids. Our nose begins to run, and we dribble. There can be a discharge from the eyes, and maybe we become incontinent. We cannot move our tongue. Our eyes start to feel dry in their sockets. Our lips are drawn and bloodless, and our mouth and throat sticky and clogged. The nostrils cave in, and we become very thirsty. We tremble and twitch. The smell of death begins to hang over us. As the aggregate of feeling is dissolving, bodily sensations dwindle, alternating between pain and pleasure, heat and cold. Our mind becomes hazy, frustrated, irritable, and nervous. Some sources say that we feel as if we were drowning in an ocean or being swept away by huge river.
    The water element is dissolving into fire, which is taking over in its ability to support consciousness. So the "secret sign" is a vision of a haze with swrling wisps of smoke.
    Most of the above happened on cue for my mother, with some interesting exceptions:
Her nose didn't seem to run, mainly because of the rush of air through the cannula. However, it crusted incredibly, a sure sign that her nose actually was running. I spent a fair amount of time during her last hours moistening this crust and picking her nose. When I began doing this she tried to move my hand away in protest, but I explained to her that her nose was clogging so quickly that I needed to do this in order to make sure oxygen delivery wasn't blocked. She relaxed. I cleared her nose as gently as possible, of course, but, well, picking one's own nose isn't exactly a gentle process, let alone someone else's.
There was no apparent eye discharge, although, after her death I did notice a slight crust on her eye lashes. It was, however, no more or less apparent than the eyelash crush with which she normally awoke.
Her lips neither drew nor paled, although this may have been due to the oxygen supplementation.
She drooled, a lot. The drooling began sometime Saturday afternoon. A couple of times she expelled what I assumed to be stomach contents, although this process was so easy for her that I hesitate to call it vomiting. It appeared to happen without observable stomach volition. The weeks previous I had, luckily, bought several extra pillows. We used every single one as I changed cases and pillows to make sure she was able to lay her head on a dry surface.
Thinking back on it, I'm sure that she lost control of her tongue and her mouth and throat became sticky and clogged. The symptoms are what predicated my concern here, that, at her next scheduled medication dose she would no longer be able to swallow acetaminophen crushed in cherry jam.
Her nostrils did not appear to cave in, but this may have been because of the cannula and the flow of oxygen and, as well, my constant attempts to keep her nose clear of crust.
Her ability to feel thirst was surprisingly present during her last 9 hours of life. I was astonished at how much liquid she willingly consumed Sunday morning when she was up in the living room. As well, throughout her last few hours she sucked at straws, eye droppers and spoons full of water or ice chips. It wasn't until her last hour, I think, that the ice chips slid out of her mouth before they melted.
I never detected any kind of an odor that I would consider peculiar to her death. This may have been, however, because, during her last hours of life, I noted that I could almost watch her skin drying on her arms, imagined this to feel uncomfortable and slathered her arms, several times, with a thick, very fragrant spicy lotion.
I cannot attest to whether, as my mother's senses dwindled, she experienced serial flashes of primal sensations. She may have, as, at one point about an hour before she died she indicated that she wanted me to cover her back up, which I did, then, a bit later, made an attempt to push the cover back, again, which I immediately understood and accomplished for her.
I wouldn't be surprised if her mind was "hazy, frustrated, irritable, and nervous." Her labored breathing, despite it's regularity, was a clear indicator of all these. Whatever else she might have been mentally experiencing, I cannot guess.

Fire
    Our mouth and nose dry up completely. All the warmth of our body begins to seep away, usually from the feet and hands toward the heart. Perhaps a steamy heat rises from the crown of our head. Our breath is cold as it passes through our mouth and nose. No longer can we drink or digest anything. The aggregate of perception is dissolving, and our mind swings alternately between clarity and confusion. We cannot remember the names of our family or friends, or even recognize who they are. It becomes more and more difficult to perceive anything outside of us as sound and sight are confused.
    I did, indeed, notice her arm that was available to me cooling. Although I'm sure I didn't record it, I also noticed, as I attempted to feed her ice chips, that her breath was very cool. I assumed it was from the ice chips. Obviously, too, she stopped being able to swallow before she died.
    Kalu Rinpoche writes: "For the individual dying, the inner experience is of being consumed in a flame, being in the middle of a roaring blaze, or perhaps the whole world being consumed in a holocaust of fire."
    The fire element is dissolving into air, and becoming less able to function as a base for consciousness, while the ability of the air element to do so is more apparent. So the secret sign is of shimmering red sparks, dancing above an open fire, like firelies.
    I can only hope that she envisioned fire as she cooled. She hated to be cold, or cool. As well, she loved fires. I hope the spiritual blaze was hearty enough for her to die in a sense of heated comfort.
    I wonder if these final visions are tweaked according to individual character. I, for instance, would love to die envisioning a glossy, multifaceted glacier, feeling a blast of icy wind in my face.

Air
    It becomes harder and harder to breathe. The air seems to be escaping through our throat. We begin to rasp and pant. Our inbreaths become short and labored, and our outbreaths become longer. Our eyes roll upward, and we are totally immobile. As the aggregate of intellect is dissolving, the mind becomes bewildered, unaware of the outside world. Everything bcomes a blur. Our last feeling of contact with our physical environment is slipping away.
    We begin to hallucinate and have visions: If there has been a lot of negativity in our lives, we may see terrifying forms. Haunting and dreadful moments of our lives are replayed, and we may even try to cry out in terror. If we have led lives of kindness and compassion, we may experience blissful, heavenly visions, and "meet" loving friends or enlightened beings. For those who have led good lives, there is peace in death instead of fear.
    Her eyes, by the way, did not roll up into her head while she continued breathing. I'm assuming, although I didn't check, that they did so when she closed her eyes after her last breath.
    The only vision my mother had of which I'm aware occurred out of the above sequence, a bit less than 12 hours before she died. Here's the description. My assumption, considering what MFS said about her, that she was "a pure spirit", is true, she lived, primarily, a life of unusual kindness and compassion [I know, I know, people say that about their mothers all the time, right? But, in regards to my mother, there are many, many, many people, both alive and dead, who would agree with this, including some extremely miserable, spiritually crippled characters.], is that whatever visions and hallucinations she had, they were overwhelmingly peaceful. I can report that she did not appear to "cry out in terror". For the last couple of hours she seemed completely immobile and withdrawn.
    I can't resist a footnote to the above passage, though. I would, frankly, hope, that the description it contains of the hallucinatory hell that confronts people who have lived in "negativity" is actually not true, is simply an aberration of the lively human need to imagine revenge and punishment upon those who mistreat us. If I were in charge of designing the spiritual universe, I would see to it that especially those who haunted dens of iniquity in this life would be greeted, as they were dying, with refreshing visions of environments and people that immediately calmed the life long fears that caused them to live in and perpetuate misery. I mean, really, why not!?!? We have proof enough here on earth that iniquity is strictly the province of being human (well, at least I have enough proof of this). Why shouldn't fear and iniquity die as we die out of our humanity?
    Okay, I'm done with the editorial portion of this post. To continue...
    Kalu Rinpoche writes: "The internal experience for the dying individual is of a great wind sweeping away the whole world, including the dying person, an incredible maelstrom of wind, consuming the entire unverse."
    What is happening is that the air element is dissolving into consciousness. The winds have all united in the "life supporting wind" in the heart. So the "secret sign" is described as a vision of a flaming torch or lamp, with a red glow.
    Our inbreaths continue to be more shallow, and our outbreaths longer. At this point blood gathers and enters the "channel of life" in the center of our heart. Three drops of blood collect, one after the other, causing three long, final outbreaths. Then, suddenly, our breathing ceases.
    Just a slight warmth remains at our heart. All vital signs are gone, and this is the point where in a modern clinical situation we would be certified as "dead." But Tibetan masters talk of an internal process that still continues. The time between the end of the breathing and the cessaton of the "inner respiration" is said to be approximately "the length of time it takes to eat a meal," roughly twenty minutes. But nothing is certain, and this whole process may take place very quickly.
    Curiously, my mother's breathing for more than the last hour of her life and certainly through the last minutes of her life, although so labored that she looked and sounded like she was on a ventilator, remained rhythmic. I did notice, in the last hour, as I was breathing with her and studying each of her breaths, that her in and outbreaths measured about the same amount of time, which is unusual. Normal breathing has been described to me as 1/3 inbreath and 2/3's outbreath. I thought little of it, though, as I assumed it was indicative of her continued attempt to "get past this cold."
    After her last full breath she had one final outbreath, a few minutes after she died, after I took out her cannula. I assumed this was the expulsion of oxygen concentrator build-up in her lungs.
    Her eyes closed but a nano-second after her last breath. Her lips immediately turned blue. Her complexion immediately paled.
    As to the cessation of "inner respiration" spoken of in the above passage, although I have no idea, my guess is that this took place rather quickly for my mother.
    There is a bit more to this chapter, a section entitled The Inner Dissolution, which discusses the Primary Spiritual (my caps) process of dying, which happens after the physical and mental death just discussed. Although I find it interesting to contemplate, it isn't anything I can absolutely correlate to what I observed during my death watch of my mother, so I'm leaving it out. The section contains an intriguing description of spiritual death being the opposite of conception. There is also reference to the seven thought states resulting from ignorance and delusion which, at spiritual death, or, perhaps it would be more accurate to say, spiritual rebirth, are brought to an end. There is a section on the death of the three poisons: ...anger, desire and ignorance...all die, which means that all the negative emotions, the root of samsara, actually cease...
    And where does this process take us? To the primordial ground of the nature of mind, in all its purity and natural simplicity. Now everything that obscured it is removed, and our true nature is revealed.
    Sounds like heaven, doesn't it!?!

    Ah! That felt good! Going through this description of dying and correlating it, point by point, to what I observed during the last days and hours of my mother's life has lightened me a bit. As I worked through the correlation I was able to remember how it was that I was never sure, until she died, whether she was dying, thus, I wasn't sure that I conducted myself appropriately to her circumstances. I can see, now, several clues, throughout her last hours, that she was, indeed, dying, regardless of whether she thought she was. Frankly, I'm glad I wasn't sure at the time. I think my confusion supported her staunch determination that she was not dying; thus, I did not fight her drive (which is a drive we all have, by the way, according to both of the Final books) to die in character. I'm also glad that I had no memory of having read this book, nor anything else that described the dying process. This allowed me to clearly and innocently notice things, rather than look for things. Reading through what I wrote over the last few days of her life, I did guess that she was dying, but, just as quickly, I'd second guess and, finally, decided just to ride the episode out and observe rather than label it. I'm sure part of the reason I decided to go with the flow of the ride rather than try to figure out the "future" significance of what was happening is that there had been many times in my mother's life during our companionship when I would anxiously wonder if she was dying "now", and, much to her consternation, ask her if she was.
    I think it's important to note that the reason I had no trouble with the metaphysical vocabulary of the Tibetan description of death is because of my familiarity with elemental metaphysics through astrology. The element of "space" (sometimes called "ether") was a relatively new one to me, having only recently encountered it in a PBS program, The Story of India. You'll notice, in the above citations, only four of the five elements are discussed in regard to death. Within the last section that I didn't cover there is a presumption that it is involved in the after-physical-death dissolution.
    It is important, as well, to consider that any medications delivered to the dying one may alter and/or eliminate some of the symptoms of dying described above. There is one medication, for instance (which we didn't use) designed to silence the death rattle. It is not for the comfort of the dying, of course, but for the comfort of the living. Some medications, like morphine, for instance, may increase certain dying symptoms, like the sense of thirst and the drying out of normal bodily fluids, mucus, for instance. Some short circuit the experience of pain that is described in the passages above, thus, may also short circuit the experience of physical pleasure. Morphine, too, alters the body's response to air hunger, so, of course, would alter how the dying one breathes. This is not to say that I believe it is inadvisable or spiritually tainted to administer palliative meds as someone is dying. In fact, I'm glad we had them and would use them again if I was in the presence of someone who was dying and experiencing pain and/or shortness of breath and/or unusual physical discomfort that could be alleviated by the administration of medications (including herbs, etc.). Perhaps, in strict Tibetan Death Theory, medicating for dying symptoms might be spiritually problematic; I'm not sure of this, I'm just speculating. However, it isn't for me. I'm sure it wasn't for my mother, either.

Here's the fundamental conversation I imagine (several times a day)...

2009-01-31T11:38:00.001-07:00

...between my parents at the Elsewhere Bar or some other equally amiable spot in Above and Beyond Other Land:

Dad:  I don't know, Chick Chick (my father's nickname for my mother). That Dealie (my father's nickname for me), she's dragging her feet about getting that Death Business done. Look at her...going through that damned website of hers, editing that friend's novel, she's not getting paid for that. Crying all over the place, staying home, watching that cop show instead of doing business...
Mom:  She's not crying all over the place. Anyway, you're a fine one to talk. She got that from you. And, I seem to remember...what was the name of that fellow you used to watch? Cannon? I also remember...
Dad:  That's enough Chick Chick. We're not talking about me. I'm just saying...
Mom:  She'll be fine. She's got a lot to deal with. It's not unusual for her to take things down to the wire. She always comes through.
Dad:  I hope you're right but, I don't know, Chick Chick. You always say everything'll be all right. It's not always all right.
Mom:  It's all been all right. Isn't everything all right now?
Dad:  Everything's always all right, here. She's not here. We're not there. We can't help out.
Mom:  I couldn't help out for several years while she and I lived together. She did fine. You know she did fine.
Dad:  I know. I told her, right after you showed up, that she did fine.
Mom:  I don't think she believes that was you, you know how she is, but, regardless of what she believes, you were right.
Dad:  You weren't always right, though, there.
Mom:  That's what you think. Haven't you figured out, yet, that things always work out for the best?
Dad:  That's not the point. She's taking waaaay too much time grieving your death. That's a problem.
Mom:  She's not just grieving my death, she's finally grieving yours. She's grieving the death of her life with me. She can't see into the future. She doesn't know, yet. That's a lot to deal with, a lot to grieve.
Dad:  Nobody was ever hit harder by their mother's death than I was. But I didn't stop midstream. I couldn't.
Mom:  Well, maybe you should have. You might have lived a longer life than your mother did if you had.
Dad:  [chuckles] Well, you might have a point, Chick Chick. Cain't say I wanted to die, that was frightening, even though, lots of times, I wished I was already dead. But, it's okay now. Since I got here, though, I haven't been sorry I left there.
Mom:  Well, no, I'm not surprised. I like it here, too, but I still wish I was there. Here is always here. There isn't always there. I'd like another run at it.
Dad:  Not me, Chick Chick. You might get your wish, though, and if you do, I hope I get mine. I don't want to go back. It's hell, there, hell on Earth. [snickers at his joke]
Mom:  That's what's got you worried. You're worried that the Dad part of Gail is going to win over the Mom part of Gail. And, you're not taking into account the Gail part of Gail.
Dad:  Now, Chick Chick, you just said something, there. She was good about following her Chick Chick part while the two of you were together.
Mom:  She's always been good about following her Chick Chick part. Look at all the chances she took. Look at the chances she takes.
Dad:  You got me there, Chick Chick. Her whole life has been one big, excuse my, weeeellll, one big chance.
Mom:  That's what life there is.
Dad:  But, did we ever know, really know, what the Gail part of Gail was? She might be even better at following her Dad part, now that you're gone.
Mom:  I'm gone, but not forgotten.
Dad:  She hasn't forgotten me, either. How about a little bet, Chick Chick?
Mom:  Okay. I'll bet a million.
Dad:  A million what?
Mom:  Whatever you want. I'll raise you to two million.
Dad:  You're awfully sure of yourself.
Mom:  Aren't you?
Dad:  Okay, I'm bettin' my side, but I hope I lose.
Mom:  You will. You always do.
Dad:  Aw, come on, Chick Chick! I've won a few.
Mom:  Even when you win, you lose. That's what you always thought when you were there. You know what they say, "Thinking makes it so." I know you understand that, now.
Dad:  Well, you might have a point.
Mom:  Gail thinks she'll be all right, no matter what happens. So she will be.
Dad:  Damn, Chick Chick! I'll bet you three million.
Mom:  Three million what?
Dad:  Whatever you're bettin'.

    In their Background Here and Now I'm chanting: "I'm trying, guys. I'm doing the best I can. I know it doesn't look good, I know it looks like everyone is adjusting better than me, sometimes even I think it doesn't look good, but I'm working on it. I have high hopes. I hope, whomever wins the bet, neither of you is disappointed."
    In my Background There and Then they're saying: "Don't worry, our children have never disappointed us, no matter what. You know this. Do what you have to do. Don't mind our bet. Whatever happens, we all win, after The End.

    And so it goes. The Superbowl is tomorrow. Early tomorrow morning, while I'm supposed to be asleep (maybe I will be asleep, who knows) I'm recording the AKC Eukanuba Dog Show to watch during The [Other] Big Game. Watching it might be touch and go for me. The various dog shows were Mom-and-me favorites. But, I'm ready. I started surfing for dog shows a few weeks ago. For my pre-game show I'll be watching a recording of the Newfoundland segment of Breed All About It, my favorite dog; I'll probably watch it several times. I'll probably also spend some time daydreaming about moving to Newfoundland...perfect place to live with a Newfie. That's how all but two of my moves have started...with daydreams. With any luck, this time next year, or the year after...
    ...later.

Today I sent out the first of Mom's death certificates.

2009-01-29T13:04:00.000-07:00

    It wasn't until the shock of the act hit me that I realized by avoiding death business I'd been avoiding the finality of Mom's death. Surprising how powerful are the symbols of death.
    Today is also my father's birthday. I find myself blearily imagining the two of them celebrating at Patty's Elsewhere Bar. A foamy Brandy Alexander, one of my mother's two favorite after dinner cordials (the other being Creme de Menthe), sits before her, assembled in a decorative, fluted glass. The bartender is an eternal expert; this drink matches the extravagence of the Brandy Alexanders prepared at the Top o' the Mar: The cream has been whipped; the liqueur is dribbling through the cream. A maraschino cherry decorates the top. Not at all like the quotidian concoction two of my sisters and I received a few weeks ago after having instructed the second of two clueless bartenders on what the drink contained.
    What is my father having? I'm not sure. As a kid on Guam I didn't notice what he drank until he devolved to mixing what he called "rock gut" with milk, equal parts, in tall water glasses at home; I only noticed the fancy bottles I used to collect. With any luck, he's drinking for enjoyment, now, rather than anesthesia.
    I'm sure they're celebrating, as Mom and I took note of his birthday every year and sometimes celebrated it. It was impossible not to. He always got such a kick out of his birthday, so much so that he used to crow that the 29th of every month was his birthday; reminding us that, every four years, February was included. Mom would fix him a fresh orange and coconut cake, the pieces swimming with juicy orange sections. I wonder what they'll order in the dining room of the Elsewhere Bar. Wish I was there.
    I wonder, too, how I'll react to Mom's birthday this year. I won't be able to help noticing it...she was a birthday whore, as well. I come by it naturally. I hope, by that time, if I shed tears, they will be tears of joy that I knew her, that I loved her, that she gave birth to me; not these damned watery fits of grief.
    Salute your lives here, Mom & Dad. If you hadn't lived, your descendants wouldn't have, either.
    Later.

"I trust her with my life."

2009-01-28T04:37:00.001-07:00

    This statement was made by my mother the day after she was reassigned to Hospice and The Hospice Cadre visited to gather our signatures on a variety of forms. It was her response to the question, asked by our Hospice Social Worker, "Do you trust her?" meaning, of course, me. Although I suspected that my mother would answer in the affirmative with a simple "Yes", I remember being as curious to know her response as was our Social Worker because, you know, people's minds change. I was especially curious, though, since the question was asked during a rigorous discussion of Hospice's Prehospital Medical Care Directive [a.k.a. Advance Directive; DNR]. Mom hesitated signing the directive. She wasn't sure that she wouldn't want to be revived if she went into cardiac or respiratory arrest. Without the DNR Hospice can't kick in. I didn't blame Mom, nor did I dismiss her concern, so I entered into an agreement with her, in full view of and with the assumed approval of the Hospice Cadre. I told her that if she went into cardiac or respiratory arrest and I felt that she could be revived back to a state she wouldn't mind I'd call the paramedics first, before calling Hospice, hide the orange directive and let Hospice immediately know that as of that time we were signing her off Hospice. Mom liked this resolution and verbally agreed to sign the DNR. That's when our Hospice Social Worker asked The Question that elicited the response which is the title of this post.
    In essence, of course, my mother was also saying, "I trust her with my death." Awe-full responsibility, which I never took lightly, but with which I was also very comfortable after our years of intimate companionship. I'd already successfully fought all kinds of monsters on her behalf, including impending death (which sometimes involved fighting Mom, especially when she didn't feel that what was happening during any particular crisis might lead to her death).
    I was reminded of the above incident a few days ago. While ensconced in one of my still frequent Law & Order cocoons I chanced across an episode entitled Golden Years that piqued my interest beyond the simple and much appreciated distraction the series seems to be providing for me right now. The synopsis of the episode should clue you into why this episode particularly intrigued me. However, it wasn't until I encountered the following bit of dialogue that I decided to retain it on the DVR in order to review it for further thought. This conversation takes place mid-episode once the DA's office realizes that the granddaughter of the woman who died may be implicated in the death of the victim:

DA Schiff:  Penal Law 260.25--"It's only illegal to neglect an old person if the victim's incompetent because of mental disease or defect." Curiosity of the law.
ADA Hennesey:  We argue hunger and thirst affected Mrs. Bauer's mind before she died.
DA Schiff:  It's only a misdemeanor--greater curiosity of the law.
EADA Stone:  Murder by starvation. I think that's enough to move a jury.
DA Schiff:  Be sure you get one with gray hair. The young get impatient with old people, especially cantankerous ones.

    I noted immediately that the episode originally aired 15 years ago on 1/5/1994. Knowing that elder law is a minefield and will no doubt continue to be so for at least a few more decades, I wondered if there had been any refinement in the law since then and, further, what Arizona Law has to say about elder abuse and neglect.
    Definitions of terms and offenses vary widely from state to state, I discovered. In some states, like Arizona, there are few defined terms applying to elder care, thus a much wider latitude for interpretation. Many states define "Caregiver/Caretaker", sometimes going so far as to apply the definition to anyone the care recipient "trusts". Arizona is one that doesn't, and, as well, doesn't limit its definitions of "Abuse" and "Neglect" to commission by a "Caregiver". Alaska has a peculiar sub-definition of "Neglect" which includes "Self-Neglect" by the "Vulnerable Adult" to her or himself. I'm not sure why or how this would be prosecuted, although perhaps it is useful in determining assignment to necessary levels of care through Alaska's agency in charge of adult protective services. In other states, like Minnesota, such terms as "Neglect", "Abuse" and "Vulnerable Adult" are broken into several well delineated categories. Most states separately define "Financial Abuse" and "Sexual Abuse". Some go to great lengths to define those. Some do not. Lots of states make specific distinctions between professional and avocational caregivers. Some have separate codes to cover professional caregivers. Following the maxim that laws don't exist until offenses are perceived, it might appear that the states with more detailed definitions of terms and abuses are those who host more elder abuse and neglect within their populations. However, considering that Arizona has a large elderly, dependent population and one of the shorter write-ups, this maxim probably doesn't hold. It would be hard to say, though, that a less well defined code allows for more "legal" abuse and neglect. In fact, it probably gives a wider latitude for interpretation either way, especially in jury trials.
    New York Penal Code 260.25 reads pretty much the same as it did in 1994 when Golden Years first aired. It was most recently updated in 1998, so that's no surprise. The episode remains of interest 11 years later, though. During the investigative phase of the story, the police department first focuses on the live-in caregiver hired by the granddaughter to long-spot her until it is discovered that the granddaughter fired the caregiver a week or so prior to the grandmother's death from starvation and dehydration for not following the granddaughter's feeding and drinking directives, which were extremely sparse, and feeding the woman more than than "prescribed". The granddaughter claimed that the directives were ordered by a physician. Turns out, though, for several months after the directives were issued up until the time of her death the grandmother refused to return to the doctor for follow-up visits and refused, as well, to be taken to a different doctor. Thus, it was speculated that, upon further review, the directives might have been removed much earlier, preventing death by starvation/dehydration.
    In the meantime, the granddaughter's confusion over what to do and what not to do in regard to caring for her grandmother heightened as her grandmother's health deteriorated. Sometimes, she admits, her grandmother pleaded with her to allow her to die. At others...well, the granddaughter never explained what her grandmother said during these "other" times but it is suggested that there may have been days when the grandmother preferred the idea of continuing to live, despite her many maladies (similar to my mother's except for cancer, from which the grandmother was not suffering) and her pain, which at times was, apparently, unbearable.
    A variety of legal "sidebars" are introduced, as well, complicating the situation further:

The granddaughter, who was in school, lied to the grandmother about what course of study she was pursuing and, as well, lied about being engaged (she was not but she allowed her grandmother to believe she was not only engaged but to a "proper" mate), had received a variety of fairly expensive gifts from her grandmother and had solicited a large sum of money from her grandmother under false pretenses.
The granddaughter was the only relative willing to take care of, let alone visit, the grandmother, even though there were two others, an aunt and her own mother, who could have pitched in or taken over.
A few people admitted that the grandmother could be "difficult".
Although the granddaughter stood to inherit the grandmother's apartment by reason of her "engagement", the grandmother left the bulk of her estate to charity, of which all relatives were aware.
It was clear that the granddaughter was not lying about the obvious mutual affection between her and her grandmother. It is also clear that, being an overburdened caregiver, most, if not all, of her "abuse" and "neglect" of her grandmother was a result of her confusion and exhaustion in the role of caregiver.
In support of the granddaughter's contention that her grandmother sometimes pleaded to be allowed to die (she was not on Hospice, which would have allowed this to occur), the grandmother's parish priest came forth with anecdotal evidence that she consulted him about the possibility of suicide. The priest informed her that "God considers despair an insult" and told her that under no circumstances would suicide be all right, even at that stage in her life.
Because all of these issues emerge after the grandmother's death, evidence is further tainted by hearsay to the point that the DAs agree that no one will ever know exactly what the grandmother wanted.

    The resolution of the episode was that, before jury deliberation, at a point when both the prosecution and defense felt sure that the jury was leaning toward convicting the granddaughter of a version of manslaughter, a plea bargain was agreed to in which the granddaughter was sentenced to two years for misdemeanor depraved indifference, rather than risk the possibility of a 25 year sentence for manslaughter due to depraved indifference. At any rate, the executive assistant defense attorney scolded the caregiver for, at the very least, not taking her grandmother to the hospital, despite the hearsay evidence of the grandmother's protests on this issue.
    Very complicated. Not, however, any more complicated than most in-home caregiving situations involving the elderly and/or infirm in the late stage of life. Caregiving is a tricky business. There were times, especially in regard to hydration issues, when I was concerned that I could be cited by the state for neglect in my handling of my mother's care. Although Hospice assignment allows a caregiver much more latitude in regard to actions (or, usually, non-actions) that would be considered, under non-Hospice circumstances, abusive and neglectful, this does not lift the emotional burden from the caregiver in the final hours of a care recipient's life. In my mother's case, there was a moment during her final hours when she let me know that something was not right in a way that things had never previously been "not right". I was lucky in that we were able to communicate, so I could ask her if she wanted a nurse to come out and check her over. She refused this. Still, though, up until the moment she died I continued to wonder if I should have a nurse come out, anyway, at that time, rather than waiting until the scheduled visit at 0800 that morning. The Hospice nurse on call and I also discussed the possibility of her coming out prior to 0800; my mother, at those times, preferred that she not come out. My confusion, though, did not abate until my mother actually died, primarily because I knew that she was not working at dying, she was working, against the odds, to continue living and I also knew she was probably not appreciative of my "So long, fair well" discussion earlier that evening, since she didn't think that night would be her last.
    Between the two of us, though, I can say without reservation that, despite her discomfort during her last night, she received the care she wanted and needed, it was of the highest quality, she received no care that she didn't want except the last time I changed her underwear and, through not only her last night as a human being but throughout our entire companionship she trusted me with her death. I do not believe her trust was misplaced. It's very tricky, though, being the caregiver attending not only to someone's life but to their death. I'm sure there are millions of caregivers throughout the world who replay pre-death hours and minutes over and over in their minds, wondering if they did the right thing, wondering if their relative could have and might have preferred to hang on a bit longer. Although I'm not one to necessarily vote in favor of more and more law, I find myself wondering, now, if it wouldn't hurt our society to consider the in-home, family caregiver more carefully in legal terms. Yes, Hospice allows some protection for the caregiver, but many people who are obviously living out their last days are not on Hospice, sometimes because they don't want to be, sometimes because their caregivers don't want them to be and sometimes because no one's considered it. The above mentioned episode of Law & Order suggests that the law doesn't yet protect caregivers from paying for deaths that, in the extreme, multifaceted confusion of end-of-life states, probably weren't preventable.

Have you heard the one about the old guy...

2009-01-26T11:58:00.003-07:00

...who was dying for twenty years before he actually died? He had so many conditions and was on so much medication for those conditions that his children called him "garbage head". His daughter labeled the quality of the last five years of his life "horrific". But, he wouldn't die. He was terrified of death and hung on through impossible odds, all the while, without overt intention, becoming harder and harder to care for and sapping the energy from everyone to whom he was related, especially his wife, who was his primary caregiver. Finally, in exasperation, one of the couple's friends, a physician, mentioned to one of the children that the wife, their mother, was taking "too good care of him." The friend recommended that the family place him in a nursing home, that this would ensure that the man would be dead in "three weeks." Ba da boom.
    How about this one about the just-this-side-of-middle age couple, wonderful marriage, great kids? Nine years after their wedding the husband is diagnosed with MS. The wife, who describes herself as a "Mary" rather than a "Martha", the names referring to Lazarus' two sisters, Martha being the natural caregiver, Mary being the natural intellectual, automatically kicks into advanced caregiver mode, a set of character traits with which she is not only unfamiliar but for which she has no talent. She discharges this role valiantly for fifteen years. Finally, the level of physical care her husband needs is so all encompassing and invasive that she realizes her caregiver role is stealing everything that is wonderful about their marriage and her life. With the help of a friend she decides to place him in an advanced assisted living facility, an excellent one. Once the professionals are in charge of handling his physical needs the couple's relationship improves so significantly that both she and her husband are grateful for the decision and the woman is able to write a heart wrenching essay about how much she loves this different but extraordinarily enriching marriage. Ba-da-bing.
    You were expecting jokes. I'm sorry. The above vignettes were culled from a book I'm currently reading, a series of essays by writers who have worked the role of caregiver in a variety of ways, entitled an uncertain inheritance: Writers on Caring for Family, edited and introduced by Nell Casey. The first vignette is adapted from an essay by Helen Schulman entitled My Father the Garbage Head [excerpt from essay]. The second is adapted from an essay by Ann Harleman entitled My Other Husband [full essay]. I chose to adapt bits of these two essays because they directly relate to the entire spectrum of my thoughts about the book I am about to review, Dancing with Rose and my experiences with facility care.
    I'm relatively fresh from my second reading of this book. I'm glad I decided to read it again. You may recall that I decided to read it a second time because I had remembered small sections that I found significant but hadn't highlighted during my first reading. Turns out, the one I was most interested in tracking isn't in this book. It was a musing by someone, in some book, probably one of the Final books, that it is unrealistic to expect our society, as it is now, to encourage or support those who decide to care for the aged, ailing and/or infirm at home among family. If you're familiar with any of my journal, particularly the last four years when my mother's care predictably intensified, you can probably guess my reaction to this opinion: On the one hand, I understand and support its realism. On the other, I question its smack of definitivity.
    As well, during this reading, I kept in mind a comment from one of my journal's frequent readers who considers the book "naive".
    Kessler describes working in a complex that is, clearly, of unusually high quality and seems to offer the best outside-the-home care available. Sadly, it also suffers from exactly the same problems that cause the worst of facilities to deserve their low rank: Extreme understaffing; bottom of the bucket pay and benefits (if available) for the "Resident Assistants" who do the most important work and little better pay and benefits for the administrators of the facility; the inherent greed of the corporation financing the facility and the corporation's disinterest in the purpose and quality of the facility. Thus, within a year of Kessler embarking on her journey as a Resident Assistant, staff turnover, including administrative staff, was typical of these facilities: Only one employee who worked during Kessler's term remains, the receptionist who is now an administrator.
    The first time I read the book, three chapters into it I scribbled on the inside of the book cover the word "Validation"; yes, I capitalized it. I was filled with excitement because the book validated my choice to care for my mother in our home through the rest of her life. As I continued to read through to the end, despite the generous intrusion of heartwarming snippets about the interactions of clients and staff as well as among clients, the book continued to validate my choice. After the first time I finished the book I wrote three observations on the inside back flyleaf:

Suppose you belong to a family with a steady number of members but the identities and characters of those members change, one by one, every month or two so that, in every year, your family was a different set of people?
We need to consider that nursing homes are a microcosm of how little we value people versus how much we value money.
It is remarkable how adaptable and resilient individual members of the human species appear to be, even when old, infirm and demented. How adaptable are we really, though?

    In light of these observations it shouldn't surprise you that I consider this book dangerous, at least mildly, if not strikingly so. I realized that if I had never stepped foot into a facility, had, at some point, considered permanently placing my mother in one because the level of care she needed seemed beyond my abilities and I had only read this book as reference, I'd probably think that facility care was a much more humane idea than keeping her at home. Thank the gods I accidentally garnered quite a bit of experience with a variety of care facilities throughout my mother's and my journey. None of the facilities in which my mother stayed, nor any of the facilities I visited and checked out in our area, except for two which were strictly assisted living facilities and expected residents to need little to no help and care most of the time, even approached the level of competence and comfort of the facility described by Lauren Kessler. Even so, this is not to say that, being a "good" facility, Kessler's facility was a good idea. One resident who arrived late in Kessler's employment who had been represented as mostly self-able but was, in fact, a resident who needed the highest level of care because he wasn't able to do much of anything for himself, including feeding himself or using a walker (and, as well, was not assigned a wheel chair), when Kessler apologized, once again, to him, for having to make him wait for a service, responded, "I guess that's my job now...To wait." I realized, at that moment, that the only times my mother ever had to wait for anything were when she was in a facility. Otherwise, without thinking about it, I considered it my job to see to it that my mother did not wait for anything. I couldn't see any reason for my mother to ever, during the rest of her life, have to wait for anything; after all, no matter how much life she had left, it wasn't much and it seemed silly to make her wait when it wasn't necessary. That's the difference between my mother living in a facility and my mother living at home. At home, with me, she did not have to take on the job of waiting.
    In addition, the kind of care that Kessler describes is extremely hard to find. It is not the kind of care that Karma describes her mother receiving in a facility. It is not the kind of care my mother received in any of the facilities in which she was temporarily housed. It is not the kind of care described by most other online caregiver journals with which I'm familiar in which facility care for a relative is involved. Granted, I know of a few instances in which Ancient Ones receive fairly decent care: A couple of local friends and acquaintances of mine have parents in ASLs and are more than satisfied with the care their parents receive, but it should be noted that they require a very low level of care; one of my friends recently relocated to an ASL after having broken her hip and she is quite satisfied with her care, although she, too, requires a very low level of care and relocated in order to ameliorate the possibility of further tragic accidents. Still and all, the specter of the care available, through facilities, for those needing intensive care, described in the first vignette with which I opened this post, is a specter because it is so common as to be reliable.
    That's why I included the second vignette. It describes a level of intensive care that is so felicitous as to improve relationships among family members. If you read the essay, though, you'll note that it was no small feat for the wife of the man with MS to find such a facility. In some places you cannot find such a facility. Prescott is one of those places.
    One of the delightful aspects of Kessler's book is that she focused on a few residents with whom she became intimately familiar, not only in regard to caring for them but went steps further by seeking out family members (mostly on her own, unpaid, time) and learning the details of their lives in an effort to understand who those people were at the time she cared for them. The detail of the lives of her fellow Resident Assistants, though, makes it clear that it is impossible to expect this level of interest from employees who aren't writing a book about their experiences as an RA. Although Kessler asserts that being "in the moment" is a requirement of caring for those in what is called, in the book, an "Alzheimer's" facility, the truth is that it is impossible, considering the extraordinary requirements of the job, to be anything but in the moment. I can attest, from my experience, that "in the moment" care is more complimentary to the care recipient if you're familiar with the care recipient's background. The requirements of the direct care jobs in care facilities make this impossible. Curiously, one administrative staff member, the person in charge of activities, "quit to take full-time care of her stepfather, who was...diagnosed with Alzheimer's." Interesting that someone who worked, enthusiastically, in a "good" facility for people with her father's condition would decide against facility care for her father.
    It is not that most people employed at these facilities don't work hard at their jobs, assuming they are not on the "noc" shifts. Most do. However, the conditions under which all employees work guarantee that almost none of them will remain in those positions for very long, due to professional "caregiver burnout", including administrative employees. It is next to impossible, and fraught with intense psychological fall out if not impossible, for a relative taking care of another relative to quit due to caregiver burnout. It is expected that a professional caregiver will quit, though; quitting is probably a nefariously supported expectation of the corporation financing the facility, as it keeps overhead low.
    It's hard for me to imagine that high staff turnover isn't responsible for some of the confusion experienced by clients in such facilities. We like to think that people who are experiencing dementia are immune to external confusion, considering how internally confused they seem to be. Is it possible, though, that people experiencing dementia are liable to become even more confused when confronted with constantly changing caregivers, thus, constantly changing types and levels of care and a constantly changing sense of who their "family" is? Kessler mentions that confusion is also enhanced when family members react to the person experiencing dementia as though they are befuddled by and losing that person. Is it possible that one of the reasons my mother's dementia stabilized is that she did not experience the confusion of constantly changing caregivers, she did not experience the confusion of having to adjust to a different home that contained none of her family, nor did she experience the confusion of a caregiver who felt as though she was retreating?
    If you are an intense needs caregiver who knows you can no longer take care of someone in your home or theirs, this book can surely help you in determining the appropriateness of various available facilities, as it gives an unstinting view of the good and bad sides of facility care at its best. Its sentimentality will give you hope that your loved one has a chance of lucking into care that is at least as competent as the care described here and, frankly, the care described in this book, on a realistic scale of what currently exists, is pretty high. And, yet, read the last, plaintive paragraph of this recent post written by yet another online journalist caregiver whose mother is in what the journalist considers to be a fairly competent facility. I think that, deep inside, despite what we are compelled to do for and with our care-needy loved ones, all of us who ever were caregivers, who ever will be caregivers, wish for this...and know it is not available...that we're stuck, and so are our loved ones who need high level care.
    Despite this, despite the dangers inherent to caregivers and care recipients in our present caregiving conundrum in this country, I can't help a short meditation on the astonishing fact that my mother's generation, which encompasses all the care recipients written about in Kessler's book, presents itself as evidence that life is tenacious and, often, triumphant under the worst of circumstances. It is this generation that raised the general population's life expectancy (although there is ample evidence that my generation is and will continue to lower life expectancy for a variety of reasons not having, yet, to do with facility care), even though many of my mother's compatriots are relegated to live-in facility care, most of them in facilities far below the level of competence described by Kessler.
    My mother's maternal grandfather was an orphan. His mother died when he was born in New York City in the middle of the 19th century, leaving behind three boys and a widower. Soon after she died my great great grandfather remarried. A few years later he died. Soon after my great great grandfather's death, my great grandfather's stepmother turned the three boys onto the street. This was one tactic among a group of strategies developed that led to the common occurrence of child abandonment that plagued the U.S.A. from the late 18th century through the early 20th century. It appears that these boys escaped two other tactics for handling orphans: Being consigned to orphanages, which were little more than inadequate warehouses for children; and being forced into gangs or sweat shops. At least two of the boys managed to find their way to the Midwest (we're not sure if they participated in the Orphan Train) and were apprenticed to farming families. My great grandfather was especially lucky with his assignment. He was treated more like a family member than an apprentice. As such, he became educated beyond high school and was trained as a minister in college. The three boys, though, were so separated from one another that each of them had a different memory of their last name, thus making it almost impossible for genealogists in the family to track ancestors beyond these boys' natural parents. Because our information is mostly anecdotal, we are still not sure if we've identified their father correctly.
    Child abandonment, being kidnapped into sweatshop labor and consignment to orphanages and "apprenticeships" were as common, at the time my great grandfather was a child, as elder abandonment and consignment to ASLs and nursing homes are, today. It was so common during my grandfather's childhood that the condition was rarely referred to as "abandonment", except by social workers concerned about the situation. It was so common that children didn't think of themselves as "abandoned" and worked hard without a backward glance, if they lived through the experience, to continue their lives in one of the established ways to deal with the situation. Although my great grandfather and his brothers are often referred to as "orphans" they are never spoken about as "unlucky" or as having endured particularly hard lives.
    I couldn't help being reminded of these three boys and what we would now call their "plight" as I read Dancing with Rose. Although it took at least a century, our society (and some others, although not all) finally decided that childhoods such as those endured by my ancestors were untenable and began the distressing work of attempting to change the circumstances and attitudes that allowed child abandonment to seem nothing more than normal. Nowadays, we consider child abandonment perverse. Often, those who abandon children, for whatever reason, are punished for doing so. If the environment that rejected a child is considered egregious, concerted efforts are made to place the child in a better, healthier environment. These efforts aren't always successful but they no longer include orphanages of the type common during the period in which my great grandfather was a child. When the efforts aren't successful, eyes remain trained on and hands remain busy with the lives and fates of those children whose circumstances haven't been adequately addressed. Although children still fall through the cracks, this happens to only a small fraction of the number who disappeared during the late 18th through the early 20th centuries.
    Makes me wonder, what can we expect of our species if we pay attention to our elderly and infirm as people who are not dying but living, as people who deserve appropriate-to-their-age-and-condition intellectual, emotional, medical and communal inclusion rather than exclusion, if we consider that, dare I say it, we have not been loving our elderly adequately, we need to learn to love our Ancient and/or Infirm Ones as they are and not as we wish they were, not as we hope we won't someday be?
    One thing we can expect, there will no longer be a market for ambivalent exposes such as Kessler's Dancing with Rose.

MFS alerted me to an interview with...

2009-01-25T11:11:00.004-07:00

...David Rieff, son of Susan Sontag, in which Mr. Rieff talks about [the interview will not immediately appear when you click; you have to click through a "pass" page], among other subjects, his book Swimming in a Sea of Death, a memoir of his mother's death.
    I don't know whether I'll read this book, although it fascinates me. I have so many others queued for reading or, having been read, queued for reviewing. This book will definitely remain in queue, though, primarily because of the critique, discussed in the above interview and review, of the phrase "a good death". I'm sure that my mother would say she had "a good life", but not sure she'd say she experienced "a good death", seeing as how I sense that she didn't think she was dying. Thus, I'm titillated, as well, by Sontag's insistence on fighting to live and insisting that those who accompanied her on what was her death journey lie to her about the trajectory of that journey.
    As you may know, as I accompanied my mother through her death I posed myself in serious argument with the idea that any death could be "peaceful", although I was able to say that, unlike the view propounded in the two Final books, Mom was not working hard at dying, she was working hard at living, even as she took her last breath; a circumstance which surprised me but which fit with her character and which I celebrate. After reading the above mentioned articles, though, I'm feeling freshly sad (not angst-ridden, mind you, or guilty, just sad, and only moderately so; after all, what can we do about the past once we're in the future) that I prefigured my mother's death a few hours before it happened and adapted my conversation and my presence to what I suspected was happening, including suggesting to her an optimum time to die. Frankly, I don't think I made any dent in her schedule or her direction. If my mother had had it in her to live through the crisis in which she died, she would have. I know her well enough to know this. In this one way, though, I think, I did not align myself with my mother's wishes: I think, along with Sontag, she would have wished that I ignore whatever I thought to be the obvious, honor her work to live and encourage her as though her work would be successful. Not much I can do about that, now. But, as I wrote my sister this morning after having read the interview, I admitted: "Makes me wonder if I was really the 'best' support for Mom as she was dying and refusing to acknowledge that she was dying. Ah, well, I suppose I'll never know...or, if I do find out, it won't be until after I die and Mom greets me and says, 'What the fuck were you thinking, telling me good-bye when I wasn't ready!?!'"
    The next time I encounter someone I think is dying but I also notice considers him or herself in a fight to live, despite the opinion voiced in the last sentence of the book review above, I'll remember and support what that person thinks they're doing, not what I think they're doing. Why? Because, well, I wish I had not sounded, to my mother, as though I was jumping to conclusions about the character of her last human night even though it turned out I was right. It seems right-er to honor people and their experiences as they are and as they understand them, especially when their lives are at their most vivid, which they surely are just before they die, assuming they have an inkling that they are raging against the dying of the light.

I really missed Mom, yesterday...

2009-01-21T10:00:00.002-07:00

...as I watched the inauguration and some of the festivities. It was impossible not to imagine her, captive to the good three quarters of it that I recorded, which I would have saved for watching after she arose. I didn't, of course, save it for later watching yesterday, except for a section of the Inaugural Luncheon and Parade that was broadcast while I ran a few errands. But, early as it was, I imagined Mom, bathed, padded, clothed and breadfasted, sitting in her rocker, paying close attention to everything primarily because I had an interest in watching it and would have explained the import of the occasion to her. We would have discussed facial expressions and the evidence of snippets of conversation being exchanged as the dignitaries were escorted to the podium. When Aretha Franklin appeared to sing, I would have exclaimed, as I did, yesterday, alone, "That's the perfect hat for her!" My mother would have agreed. She may have even simultaneously exclaimed the same. Although my mother wore few hats throughout her life, she loved the idea of hats. One of the reasons she loved movies made in the late thirties through the forties was because they contained a plethora of hats to dissect. We would have discussed, in detail, the clothes people wore, including men's choices of ties (to which my mother was particularly attuned), the peculiar color of Michelle Obama's outfit, the interesting informality of the sweater she wore over her dress at the Inaugural luncheon and noted, later, that Dr. Biden's striking red coat covered a smart gray dress. As I occasionally wept a few tears, Mom would have given me that "You and your father" look, maybe even teased me about being too emotional. She would have pronounced the inaugural poem "very nice", while I would have mentioned the interesting inclusion of "love" in the poem. During Obama's Inaugural speech she would have paid phlegmatic, in the moment attention, but would not have considered that he was saying anything that was much different than any new president. Her belief was that it isn't the president who's important, it's the people who elected the president. She would not have had a sense of the specific historical import of the moment, which is one of the things I loved about living with her. When, back in 2004 after her first blood transfusion, she answered one of those Casual MMSE questions about who the president is with, "What does it matter?" she wasn't attempting to dodge her lack of memory, she was stating her philosophy about politics which, frankly, hadn't changed much since the days when her memory could be said to be more typical of the general population. Even before her mind formally inducted her into The Country of Timelessness, she had a timeless sense of history. She may not even have noticed that there was anything different about Obama than anyone who's ever taken the Presidential Oath of Office, except that I'm sure she would have commented that he looks, "awfully young", as I recall her mentioning this during the campaign. When I was moved, in relief, to salute Bush as he and Laura's helicopter cleared the Capitol Mall, she may have, as well, saluted, although for different reasons. She was a military veteran and this was a "military" and a "veteran" moment. She would have patiently sat through all the "boring" stuff while I waited to hear Obama's remarks at the luncheon. When he finished, she and I would have looked at each other, she would have said, "Well, that was underwhelming," and I would have agreed.
    Then, I would have said, "Thanks, Mom, for bearing with me through this." I always thanked her for deigning to watch or listen to stuff that I knew didn't catch her fancy.
    She would have said, "Oh, no problem. It was interesting."
    "What will it be now?" I would have asked. "An episode of Touched by an Angel or, maybe a movie? How about Mr. Smith Goes to Washington in honor of the occasion?"
    As it turns out, MFS and I discussed Obama's Inauguration yesterday evening in much the same way my mother and I would have, which was exactly what I needed.

    Yes, I am working on my review of Dancing with Rose. As I was writing it, though, I discovered that I was remembering comments in the book that I hadn't highlighted, bringing into question whether they actually came from that book, so I decided to quickly read through the book, again, looking for my memories. I'm in the process of doing that, now; it's not going as quickly as I imagined. So, it'll be at least a few more days, as I have yet another project through which I'm now having to push myself, collating everything needed for Mom's taxes. Not the easiest project: As MFS commented, it's easier if one is born at the end of a year and dies at the beginning of a year.

    I'm doing okay, I think. At present I'm experiencing more low points in my days than high points. Night before last, though, I reconnected with my local book club after at least four years, possibly more. It was as though I'd never left, which was exactly the surprise I needed at exactly the right time.
    I could, easily, I note, especially in the morning when I awaken, drown myself in sorrow, if I wished...but, daily concerns and excellent friends seem to pop up just before the deluge covers my mouth and nose.
    I'm not one to believe that my mother "would want me to go on". Not that I think she wouldn't, but, if any part of her continues to exist and is aware, I, frankly, think she misses me as much as I miss her. Even if she continues to be aware of my life, how frustrating it must be for her to know that I am not aware of her in the state in which she may or may not exist now, especially since I made it my business to be so aware of the various states of her life, while she was alive, that I often entered into them. However, she was also a pragmatic and accepting soul, so I'm sure she's dealing with my absence better than I am dealing with hers. Give me time, Mom. Consider my sometimes confounding grief a compliment to you and, as well, blame it on the "Dad" part of me!
    Later.

Thinking about After Words

2009-01-13T21:13:00.000-07:00

    MFS printed a lovely Henry Scott Holland quote and slipped it to me inside a copy of the book Nothing to Be Frightened Of, which she offered in the same grand, loving gesture through which she offered herself to me during her visit last week.
    It seems wise for me to note that the Holland quote is a small part of a larger sermon delivered by Holland on the occasion of the death of King Edward VII. The sermon, in its evangelical Christian entirety, does not actually assert the availability of life after death as does the excerpt. Rather, as it poses a debate between reason and faith in the shadow of death, it exhorts its audience to revel in certain Christian promises inherent in the doctrine of Salvation. Despite its overt message, though, the sermon thoughtfully and accurately describes stages inherent in the grieving process, as well as the process of wonderment about death in which humans are forced to indulge, once we become aware of the fact of death.
    As usually happens after someone of import to one's life dies, I've both sought and been offered all kinds of quotes about death, grieving and sorrow. I'm recently noticing that I'm going through stages in which some quotes work better for me than others. Immediately after my mother's death "It is finished!" worked best. It was stark, final, and brought me face to face with what had happened, which was what I needed. Within days, though, the quotes that worked best for me were personal statements of others about my mother, eccentricities of her character, details of others' acquaintance with her, what she meant and continues to mean to others. A few weeks later, not yet completely awash in the inconsolable loss of her death, it was the story of the ship disappearing over the horizon and learning of the uncanny coincidence of an actual ship christened with my mother's name, also sailing over the horizon, that stirred my soul, as though it was a message from my mother to those of thus left in the wake of her death.
    I know that I still have some grief stages to go because, despite my desire to cling to the Holland quote, I still haven't enough faith in it to allow it to embrace away the loss I feel in the evidence of her absence. I suspect I will, one day, relent and allow that embrace, as I seem to have done so in regard to all other deaths that have intruded upon my life. I'm just not there, yet, with my mother's death.
    Where am I right now? I'm finding, as I read Julian Barnes entertaining, provocative and multifaceted rumination on death, that this attitude is where I spend a good deal of time, when I am not drowning in desolation or distracting myself from the fact of her death (which is also, presently, one of my fairly common activities). There is one quote, though, that I have lately been tolling internally and constantly. It isn't one you'll find at Quoteland, although you may find versions of it in sympathy notes to one person or another scattered throughout the web. It came to me via a long time, local friend of mine. She was responding to a note I e'ed her in which I apologized for not getting back to her sooner but, I explained, I'd gone to my barber for a haircut and when I returned the emptiness of my home overwhelmed me and threw me into a day of heavy mourning. "I know exactly what you faced," she responded. "My father died in 1975. I still have moments when something reminds me of him and I'm bowled over with sadness. He was the love of my life." Mind you, this is a woman who is involved in a hugely successfully marriage spanning several decades; she and her husband raised several children which remain constant delights; they, in turn, have borne several grandchildren, each of whom she treasures and about whom she often talks. She is also 17 years older than me. And, yet, her father was the love of her life.
    I'd been feeling this way about my mother but I was shy about saying it to myself, let alone to others. It seemed absurd and perverted that I'd want to describe my mother this way, that I'd feel this way. It seemed more appropriate, healthier, to say, as others have said, that she was "the first love" or "one of the loves" of my life. When my friend admitted this to me, though, without realizing it she uttered the single most empathetic and valuable sentence of any I've collected, so far; the phrase that spans all the stages of my grief, the phrase that gave me the permission I apparently needed to fully mourn my mother's death without restriction or apology.
    My mother was not and is not the only love of my life. She is, though, the source of my ability to love and be loved. By a quirk of fate and a naive request I was allowed to repeat all those initial, fundamental lessons during the prime of my life so they were freshened, their resonance renewed, as though she had just coaxed my first smile from me; and, in smiling at her, I'd just delighted her beyond measure. Further, I was able to practice those lessons in an environment of equality with my once-teacher. That is a lot to lose, a lot to mourn...and promises a lot in which to revel when her absence is no longer so domineering that it overshadows the radiance of our relationship.
    Although I'm not there, yet, I don't even see a light at the end of what seems like this endless, winding tunnel of isolation from my mother, I look forward, with faith, to a time when her death will, truly, be "nothing at all". I expect my faith will be rewarded because my mother was, of course she was, and is, the love of my life.
    Thank you, Colette.

Just a note to let you know...

2009-01-12T19:20:00.002-07:00

...that last week's visit with MFS, MPS toward the end of the week and MPNP in the middle of the week was wonderful, all I'd hoped for and more...and their leaving, yesterday, was much more difficult than I'd imagined it would be. It seems I've finally figured out that my major grief hurdle is getting past the absence of my mother in my home and my life; it's a HUGE hurdle; one that stuns me every time I find myself facing it alone, again...so, it's probably good that I have no more visits to which to look forward, at least for the foreseeable future.
A few aspects of the visit that have helped me:

My mother's rocking chair is no longer "my mother's" rocking chair. It was used so much during this last visit and I was aware enough of it being used (apparently, according to MCS, she used it a lot during the first visit wave but I was so oblivious to everything I didn't notice) that it is now, primarily, a rocking chair and, secondarily, my mother's rocking chair.
I feel as though each of my sisters and I have renewed our bonds and I am firmly set within my extended family. This is a wonderful feeling.
Upon realizing that I have this HUGE emotional hurdle to overcome in regard to being alone again, it seems I'm also discovering that I also have a fairly fearless attitude toward any death business I now have to conduct. I feel that, well, I've lost my mother, whose life I allowed, without apology or regret, to intertwine so intimately with mine that upon her death a part of me also died (don't assume this means what it appears to mean on the surface); upon her death I also lost my life's former purpose and my life's direction; thus, I have nothing left to lose, which actually makes me feel incredibly empowered in regard to going up against any governmental or business concerns which may (or may not) loom in my very immediate future while completing death business. I simply cannot be knocked any lower than I already am...thus, I figure, I am in the perfect position to block anyone's attempts to do so.
It has been a most amazing experience to discover my mother's legacy in my sisters; habits and attitudes of my mother's that have been familiar to me in my sisters but that I didn't associate with my sisters until my mother was, to put it bluntly, out of the way. People do, indeed, live on in those with whom their lives were intertwined and, as well, these legacies bring extraordinary comfort to those of us who remain "in the way".

    I find it astonishing that I am having trouble resurrecting the pleasure I spent a lifetime enjoying in being alone. I know that pleasure is in "here", someplace; but I am having trouble finding it because I am still in the habit of listening for the sounds of my mother's life, especially when I attempt to involve myself in activities that I not only pursued when living alone but also pursued, intermittently and with difficulty, while I was my mother's companion. What seems like hundreds of times every day I am stopped in my tracks by the almost palpable barrier of my mother's absence. I'm discovering that the habit into which I fell of discussing everything with my mother, absolutely everything, which I'm glad I did, as I believe it was one of the key elements that allowed the preservation of my mother's dignity right up to her last breath, was a habit upon which I came to rely heavily, as well. You'd think that this would be an easy hurdle to clear, wouldn't you, simply by continuing to talk to my mother, but I am not in the habit of talking to the dead immediately after they die. I've discovered that I have a type of internal sacred proscription against talking so soon to the dead; I imagine that they are busy reorienting themselves and that it is good manners not to immediately intrude upon this process. I tried talking to Mom, yesterday, out of desperation after my sisters left. It helped, some. But, overall, I wasn't able to continue long enough for the relief to take a solid hold. Today I talked to her not at all. And, as well, the talk in which I find myself indulging isn't anything spiritually significant, like apologies for mistakes I think I might have made or explanations for misunderstandings that I feel cropped up between her and me; in fact, I have none of these urges. It's, simply, our day-to-day banter; which kept her oriented in life and, much to my surprise, kept me oriented, as well. I am so out of practice with my "old" orientation, which, philosophically, I still value, highly, but, within which, realistically, I feel strangely inept. It's not like riding a bicycle years after the last time one was ridden.
    So, anyway, I've begun, I think, a protracted and intense reorientation period. I'm excited, actually, that I no longer have anything to distract me from this process but, oh, my, it is difficult. I find myself often thinking of something my mother said to me when she asked me to be her final companion after having lived alone for nine years after my father's death and having appeared to have done it with zest and success, "This living alone business isn't all it's cracked up to be." At the time she said it I understood it from her point of view because she was not ever a lover or seeker of solitude, but I didn't understand it organically. I get it, on an organic level, now. I have faith that this is "a good thing", for me, for my character, for whatever ability I have to be compassionate and empathetic. I'm just perplexed about how I am, now, going to integrate my life-long love of solitude with my decade-and-a-half interest in, well, the type of fundamental companionship I shared with my mother. I remember, for instance, how I used to gripe in this journal about not being able to read "the way I like to read" (not sure if that's a direct quote of myself but I am sure I wrote very similar complaints here). Now, I'm finding, I can't read for very long before I become aware that I am listening for an interruption and the act of realizing I'm listening in vain distracts me from being able to read.
    In the meantime, I'm, immediately, a little confounded in the wake of the end of this last visit and expect to remain so for another day or two, so it might be a couple of days before I get that recently promised book review out.
    So, anyway, you know, later...