tag:blogger.com,1999:blog-54041362024-03-13T03:47:00.452-07:00The Mom & Me Journals dot Net<b><i>The definitive, eccentric journal of an unlikely caregiver, continued.</i></b>Gail Raehttp://www.blogger.com/profile/10429291136763615708noreply@blogger.comBlogger301125tag:blogger.com,1999:blog-5404136.post-80427254690353973252010-07-28T13:24:00.000-07:002010-07-28T13:24:55.087-07:00Although I didn't think I'd find myself......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.<br /> 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.<br /> I'll post again each time I add a new transcript, of all which will be added according to the dates they were made.<br /> Later.Gail Raehttp://www.blogger.com/profile/10429291136763615708noreply@blogger.com0tag:blogger.com,1999:blog-5404136.post-91403535016625300062010-06-12T14:53:00.003-07:002010-06-12T14:55:01.890-07:00For those few of you......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. <a href="http://afterthemomandmejournals.blogspot.com/2010/06/yet-another-month-or-so-has-come-and.html">Here's</a> the link.Gail Raehttp://www.blogger.com/profile/10429291136763615708noreply@blogger.com0tag:blogger.com,1999:blog-5404136.post-51530919039526590172010-04-30T11:15:00.004-07:002010-04-30T11:19:34.741-07:00I'm continuing this journal......in a new edition, <a href="http://afterthemomandmejournals.blogspot.com/">After the Mom & Me Journals dot Net</a>. I've just published <a href="http://afterthemomandmejournals.blogspot.com/2010/04/this-is-where-im-continuing.html">my first post</a> over there, an apologia for that section of the journals. Chances are, I won't be publishing anymore posts here.<br /> Just wanted you to know.<br /> Probably (but, you never know) not later, at least not here, but definitely later <a href="http://afterthemomandmejournals.blogspot.com/">there</a>.Gail Raehttp://www.blogger.com/profile/10429291136763615708noreply@blogger.com0tag:blogger.com,1999:blog-5404136.post-35316715843357892472010-04-29T23:03:00.001-07:002010-04-29T23:07:02.053-07:00Okay, so here's the scoop. 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:<br /><center><b><font face="verdana" color="#cc99cc">BLOGGER IS TURNING OFF FTP PUBLISHING ON MAY 1ST, 2010</FONT></b></center><br /> 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.<br /> 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.<br /> 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 <a href="http://insanegrief.blogspot.com/">In Sane Grief</a>, <a href="http://essayingthesituation.blogspot.com/">Essaying the Situation</a>, <a href="http://moviesmomandme.blogspot.com">Movies, Mom & Me</a> and, maybe, <a href="http://caringaboutfood.blogspot.com/">Caring. About Food.</a> In the meantime, this post is notification that you can now find updates to this journal at <a href="">http://.blogspot.com/</a>. 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: <a href="http://themomandmejournals.blogspot.com/"><b>http://themomandmejournals.blogspot.com</b></a>. 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.<br /> Maybe we'll be communicating again soon! Might be fun!<br /> Later, I think.Gail Raehttp://www.blogger.com/profile/10429291136763615708noreply@blogger.com2tag:blogger.com,1999:blog-5404136.post-87545032252575627182009-12-08T08:55:00.002-07:002009-12-08T09:46:23.401-07:00On this date and at this time last year......my mother's body was leaving our home for the last time.<br /> It's been a year.<br /> 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.<br /> At 2325 last night, just about the time, last year, <a href="http://themomandmejournalsdotnet.net/2008/12/sometimes-when-my-mother-snores.html">when I began to wonder if my mother and I were conducting her death watch</a>, 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 <a href="http://en.wikipedia.org/wiki/Typhoon_Karen">Typhoon Karen</a> 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.<br /> 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.<br /> 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.<br /> 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.<br /> 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.<br /> 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.<br /> 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.<br /> Later.Gail Raehttp://www.blogger.com/profile/10429291136763615708noreply@blogger.com5tag:blogger.com,1999:blog-5404136.post-48589059113765446722009-12-03T14:11:00.002-07:002009-12-03T14:17:32.853-07:00Palliative Care Grand Rounds 1.11 is up! Great edition this month, lots of new stuff and new sites. The presentation is interesting and funny, too.<br /> 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 <a href="http://deathclubforcuties.blogspot.com/">Death Club for Cuties</a>.<br /> Go. Now.<br /> Later.Gail Raehttp://www.blogger.com/profile/10429291136763615708noreply@blogger.com0tag:blogger.com,1999:blog-5404136.post-20312229447273353092009-11-27T12:38:00.002-07:002009-11-27T13:35:22.148-07:00Over the last two weeks......I've gotten a couple of comments from a blogger named <a href="http://www.blogger.com/profile/11078744172786664046">karen</a> who writes about caring for her mother at home at <a href="http://alzheimersandmomblog.blogspot.com/">Mom, Me and Alzheimer's</a>. 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.<br /> In <a href="http://alzheimersandmomblog.blogspot.com/2009/11/walk-around-lake.html">one of her more recent posts</a> 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:<ul><li>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.</li><li>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.</li><li>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.</li><li>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.</li><li>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.</li><li>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.</li><li>She is frank about her experiences with institutional care in regard to her mother and continues to use it, out of necessity.</li></ul> 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.<br /> 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 <font color="#ffcccc" face="verdana">Honorable Alzheimer's Blogs</font> 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.<br /> 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!Gail Raehttp://www.blogger.com/profile/10429291136763615708noreply@blogger.com5tag:blogger.com,1999:blog-5404136.post-33528963008891250972009-11-22T10:40:00.002-07:002009-11-22T10:48:01.996-07:00Yet another "change" registered......this morning at the <a href="http://themomandmejournalsdotnet.net/2009/11/this-will-be-my-official-more-changes.html#am1garbage">Official "More Changes" Post</a>. 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.Gail Raehttp://www.blogger.com/profile/10429291136763615708noreply@blogger.com0tag:blogger.com,1999:blog-5404136.post-4746545168040456942009-11-21T09:19:00.004-07:002009-11-22T13:48:03.100-07:00It's about Ethics, Isn't It? I've been "away" from following <a href="http://arts.pallimed.org/2009/11/palliative-care-grand-rounds-110.html">Palliative Care Grand Rounds</a> (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. <a name="dcfc"><font color="#c3d997">As</font></a> I perused this month's edition of PCGR I was introduced to the website <a href="http://deathclubforcuties.blogspot.com/">Death Club for Cuties: Caring for patients and families at the end of life</a>. 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: <a href="http://deathclubforcuties.blogspot.com/2009/11/my-first-elnec-presentation.html">My First E(nd of) L(ife) N(ursing) E(ducation C(onsortium) Presentation</a>. 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 <a href="http://themomandmejournalsdotnet.net/2009/11/yesterday-i-watched-movie-that-i-now.html">Tokyo Story</a>, the movie featured in my immediately previous post (to which the movie title, back there, is linked).<br /> Scuttle down in the <a href="http://deathclubforcuties.blogspot.com/2009/11/my-first-elnec-presentation.html">Death Club for Cuties</a> 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: <i>the impulse toward good involves choice, and is complicated, and the impulse toward bad is hideously simple and easy.</i><br /> 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 <a href="http://en.wikipedia.org/wiki/Yasujir%C5%8D_Ozu">Ozu</a> 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.<br /> 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.<br /> 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?<br /> 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":<blockquote><i>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.</i></blockquote> Ultimately, <a href="http://rogerebert.suntimes.com/apps/pbcs.dll/article?AID=/20031109/REVIEWS08/311090301/1023">Tokyo Story</a> 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.<br /> 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".Gail Raehttp://www.blogger.com/profile/10429291136763615708noreply@blogger.com1tag:blogger.com,1999:blog-5404136.post-54012346078735860322009-11-20T09:12:00.002-07:002009-11-20T11:14:50.522-07:00Yesterday I watched a movie that I now consider......the best and most extraordinary cinema revelation about relationships in families that include Ancient Ones: <a href="http://rogerebert.suntimes.com/apps/pbcs.dll/article?AID=/20031109/REVIEWS08/311090301/1023">Tokyo Story</a>. I stumbled across it because I have an affection for Japanese cinema and <a href="http://www.netflix.com/">Netflix</a>' 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."<br /> 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.<br /> I learned through the commentary that <a href="http://en.wikipedia.org/wiki/Yasujir%C5%8D_Ozu">Ozu</a>, the conceptualist and director of this movie, considered <a href="http://rogerebert.suntimes.com/apps/pbcs.dll/article?AID=/20031109/REVIEWS08/311090301/1023">Tokyo Story</a> 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.<br /> 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.<br /> 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, <a href="http://themomandmejournalsdotnet.net/two/2004/10/i-could-have-lied.html#vacation">one of which is discussed here</a>. 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?<br /> 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, <a href="http://rogerebert.suntimes.com/apps/pbcs.dll/article?AID=/20031109/REVIEWS08/311090301/1023">Tokyo Story</a> tells us, remains a mystery. Is the loneliness that seems to plague the lives of the parents and the daughter-in-law in <a href="http://rogerebert.suntimes.com/apps/pbcs.dll/article?AID=/20031109/REVIEWS08/311090301/1023">Tokyo Story</a> "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...<br /> 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 <a href="http://rogerebert.suntimes.com/apps/pbcs.dll/article?AID=/20031109/REVIEWS08/311090301/1023">Tokyo Story</a>. 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"? <a href="http://rogerebert.suntimes.com/apps/pbcs.dll/article?AID=/20031109/REVIEWS08/311090301/1023">Tokyo Story</a> 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.<br /> If you have an interest in and/or appreciation for movies about families that include elders, watch <a href="http://rogerebert.suntimes.com/apps/pbcs.dll/article?AID=/20031109/REVIEWS08/311090301/1023">Tokyo Story</a>. 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.Gail Raehttp://www.blogger.com/profile/10429291136763615708noreply@blogger.com1tag:blogger.com,1999:blog-5404136.post-85520166658455764632009-11-18T10:47:00.006-07:002009-11-18T19:26:47.656-07:00With much thanks to The Good Death,...... 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, <a href="http://www.blogger.com/profile/13134277281082757857">Jessica Knapp</a>, I ran across an interesting document mentioned in <a href="http://thegooddeath.blogspot.com/2009/09/five-wishes.html">one of her posts</a>. It's a type of Living Will that goes beyond the typical in a variety of important ways. To quote the website <a href="http://agingwithdignity.org/index.php">Aging With Dignity</a>, 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 <a href="http://agingwithdignity.org/forms/5wishes.pdf">Five Wishes Preview</a> 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 href="http://www.learningplaceonline.com/stages/together/wishes/wishes-1.htm">a link on this site</a> 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.<br /> 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 <i>not</i> appoint to this position.<br /> 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.<br /> 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.<ol><li>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 <a href="http://themomandmejournalsdotnet.net/2008/07/hospice-and-dying-game.html#alert2"><font face="Comic Sans MS"><u>the discussion my mother and I had about how much pain and palliative medicine she would want during the active dying phase</u></font></a>. 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.</li><li>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.</li><li>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.<br />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.</li><li>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:<ul><li>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 <a href="http://www.maggiecallanan.com/"><font face="Comic Sans MS"><u>Final...</u></font></a> 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.</li><li>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.</li><li>The Fourth Wish request, "I wish to be cared for with kindness and cheerfulness, not sadness", brings to mind <a href="http://themomandmejournalsdotnet.net/insanegrief/2009/11/silence-explained.html#yes"><font face="Comic Sans MS"><u>this excerpt from the movie "Yes"</u></font></a> I recently published over at <b><font color="#ffcccc">In Sane Grief</font></b>. 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.</li><li>Wish 5 is <i>full</i> 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.</li><li>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 <a href="http://www.maggiecallanan.com/"><font face="Comic Sans MS"><u>Final...</u></font></a> 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.</li><li>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?</li><li>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.<br />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?</li></ul></li></ol> 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.<br /> 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 "<a href="http://themomandmejournalsdotnet.net/insanegrief/2009/04/to-begin-hearts-is-trump.html#em">excess mortality</a>" 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.<br /><br /><a name="ia"><font color="#ffcccc"><b>Important Amendment:</b></font></a><br /> 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:<ol><li><a href="http://en.wikipedia.org/wiki/Five_Wishes"><font face="Comic Sans MS"><u>Wikipedia's Article</u></font></a><br />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.</li><li><a href="http://www.huffingtonpost.com/barbara-coombs-lee/healthcare-decisions-at-t_b_187800.html"><font face="Comic Sans MS"><u>Huffington Post's review of the document by Barbara Coombs Lee</u></font></a><br />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.</li><li><a href="http://www.deathandtaxesblog.com/2009/05/powers_of_attorney_vs_the_five.html"><font face="Comic Sans MS"><u>Powers of Attorney vs. The Five Wishes Advance Directive</u></font></a><br />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 <a href="http://www.isba.org/ibj/"><font face="Comic Sans MS"><u>IBJ</u></font></a> 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.</li><li><a href="http://www.isba.org/ibj/2009/05/242_estate_planning.html"><font face="Comic Sans MS"><u>Be Careful What You Wish For</u></font></a><br />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.</li><li><a href="http://www.deathandtaxesblog.com/2009/06/five_wishes_a_rebuttal.html"><font face="Comic Sans MS"><u>Five Wishes: A Rebuttal</u></font></a><br />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.<br />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.<br />I decided to consult the hospitalist, with whom I was more than familiar by this time. He reiterated the head nurse's stance.<br />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.<br />Although all this was corrected, it was a frustrating lesson in what can happen when legalese and medicine mix.</li></ol><br /> 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.Gail Raehttp://www.blogger.com/profile/10429291136763615708noreply@blogger.com1tag:blogger.com,1999:blog-5404136.post-49955258022253040702009-11-13T17:18:00.004-07:002009-11-22T10:42:21.064-07:00This will be my official "More Changes" post. I was reminded of yet another change while watching, this afternoon, a <a href="http://www.tcm.com/index.jsp">TCM</a> movie I'd DVR'ed a while ago, <a href="http://en.wikipedia.org/wiki/Once_Upon_a_Time_in_the_West">Once Upon A Time in the West</a>. 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 <a href="http://www.weather.com/">The Weather Channel</a>, 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, <a href="http://themomandmejournalsdotnet.net/three/archive/2005_05_29_archive.html#loudTV">the police were once called on us</a> here in Prescott because of the TV volume. That incident remains one of my (many) favorite memories of our adventure together.<br /> I've not completely stopped using closed captioning or movie subtitles, but it's nice not to <i>have</i> 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.<br /><br /> 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, <a href="http://playingwithfood.home.mindspring.com/condimeatframe.html">I used meat more as a condiment</a> 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.<br /><br /> 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 <font color="#ffcccc" face="verdana">Mom & Me Journals Special Posts</font> section over there in the <font face="verdana" color="#cc99cc"><b>Links</b></font> section to the right.<br /><br /><a name="am1garbage"><font color="#ffcccc"><b>Amended 11/22/09:</b></font></a><br /> 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.<br /> 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. <a href="http://www.idiaper.com/Reusable-Unisex-Briefs_c_1256.html">Here's a sampling</a> 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.<br /> 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 href="http://www.gilbertguide.com/expert-columns/adult-incontinence/">a series of posts</a> written at the <a href="http://www.gilbertguide.com/">Gilbert Guide</a> 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, <a href="http://www.gilbertguide.com/articles/can-you-compost-adult-diapers/">in this article</a> 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. <a href="http://www.gilbertguide.com/articles/adult-diaper-disposal-environmental-awareness/">This article</a> 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. <a href="http://www.gilbertguide.com/articles/going-green-in-adult-diapers-reducing-your-carbon-footprint/">This article</a> 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.<br /> 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.Gail Raehttp://www.blogger.com/profile/10429291136763615708noreply@blogger.com3tag:blogger.com,1999:blog-5404136.post-60345527283551199892009-11-12T12:25:00.003-07:002009-11-12T13:27:43.698-07:00Oh, yeah! Forgot to mention the holidays! 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. <a href="http://playingwithfood.home.mindspring.com/holidaysframe.html">Decades normal for me</a> (the second paragraph in the linked article clearly states my congenital attitude toward The Holidays).<br /> 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.<br /> 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.<br /> 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, <a href="http://themomandmejournalsdotnet.net/movies/archive/2005_02_06_archive.html#la">Love Actually</a> and <a href="http://themomandmejournalsdotnet.net/movies/archive/2005_02_06_archive.html#iawl">It's a Wonderful Life</a>. I will probably throw in a few from our collection of <a href="http://themomandmejournalsdotnet.net/movies/labels/bible%20movies.html">bible movies</a>, 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 <a href="http://themomandmejournalsdotnet.net/movies/labels/bible%20movies.html">bible movie</a> marathon.<br /> Oh, and "just in case I don't see ya," (a quote from <a href="http://themomandmejournalsdotnet.net/movies/archive/2006_11_05_archive.html#tts">The Truman Show</a>), I hope the holidays are easy on you, this year; especially this year.<br /> Later.Gail Raehttp://www.blogger.com/profile/10429291136763615708noreply@blogger.com0tag:blogger.com,1999:blog-5404136.post-36256135434962361992009-11-12T10:23:00.003-07:002009-11-12T12:22:17.730-07:00Things that Have Changed Since Mom Died<ul><li>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:<ol><li>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.</li><li>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.</li><li>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.<br />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.<br />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.</li><li>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.</li><li>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.</li><li>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.</li><li>We used to use the electric kettle several times throughout the day. I now use it once or twice a day, never more.</li><li>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.</li><li>I no longer use the dishwasher for washing dishes. Previously, I used it once a day.</li><li>I watch probably a third to a half less television than my mother did (including movies through the DVR).</li></ol></li><li>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.</li><li>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.</li><li>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.</li><li>I used to awaken and spring into action. Now, I awaken and, after an early morning walk, I mosey into action.</li><li>I'm reading, again! A lot! It's wonderful!</li><li>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.</li><li>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.</li><li>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.</li><li>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.</li><li>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.</li><li>The yard gets significantly more attention now than it did when my mother was alive.</li><li>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.</li><li>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.</li><li>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.</li><li>I drink significantly less coffee than I used to.</li></ul> Some things that haven't changed:<ul><li>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.</li><li>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.</li><li>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.</li><li>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.</li><li>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.<br />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.</li><li>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."</li></ul> I will probably add, in subsequent posts, other things as they occur to me.<br /> In the meantime...later.Gail Raehttp://www.blogger.com/profile/10429291136763615708noreply@blogger.com0tag:blogger.com,1999:blog-5404136.post-21241465784528329262009-11-10T10:08:00.004-07:002009-11-10T22:36:22.324-07:00My 10 Months of Grief-Stricken Thinking Wow! Hard to believe it's been so long since I've posted here. Reasons; hmmm...let's see:<ul><li>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 <a href="http://themomandmejournalsdotnet.net/insanegrief/"><font face="Comic Sans MS"><u>In Sane Grief</u></font></a> (yes, I remain maddeningly compartmentalized).</li><li>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.</li><li>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.</li></ul> 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.<br /> If you're curious about my personal grief experiences, I've just written a post covering those over at <a href="http://themomandmejournalsdotnet.net/insanegrief/2009/11/silence-explained.html"><font face="Comic Sans MS"><u>In Sane Grief</u></font></a>.Gail Raehttp://www.blogger.com/profile/10429291136763615708noreply@blogger.com0tag:blogger.com,1999:blog-5404136.post-7226063843034019912009-07-02T10:17:00.001-07:002009-07-02T15:17:38.657-07:00Caregiver Medical Advocation for Ancient Ones 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 <a href="http://www.nytimes.com/2009/07/02/opinion/02leipzig.html?_r=1">this</a>. 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? "<b><i>...American medical schools require no training in geriatric medicine.</i></b>"<br /> 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 <a href="http://themomandmejournalsdotnet.net/2008/06/cataloguing-highlights.html">here</a>, in case you're curious.<br /> 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.<br /> 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.<br /> 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.<br /> 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:<ul><li>Year by year, fewer and fewer people are going into or remaining in medicine as doctors and nurses.</li><li>Of these, a steadily declining number are specializing in geriatrics.</li><li>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.</li><li>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.</li><li>The medical-industrial establishment is in a state of four-square prejudice against avocational medical advocates and not inclined toward indulging professional medical advocates.</li><li>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.</li><li>Insurance companies are not kindly disposed toward the medical conditions and requirements of the elderly.</li><li>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.</li></ul> 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."<br /> 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.<br /> 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:<ol><li>A forum for comparing the medical experiences one encounters on behalf of one's care recipient;</li><li>A place to seek help in researching medical information needed for adequate medical advocation;</li><li>A clearinghouse for information on and ratings of local sources of geriatric medical care;</li><li>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;</li><li>Perhaps, the retention of a professional medical advocate by the group for advice;</li><li>When individual cases become legally questionable, help with garnering community resources to address and resolve these cases.</li></ol> 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.<br /> Later.Gail Raehttp://www.blogger.com/profile/10429291136763615708noreply@blogger.com2tag:blogger.com,1999:blog-5404136.post-69276843590881156772009-07-01T10:07:00.002-07:002009-07-01T10:15:35.742-07:00Palliative Care Grand Rounds 1.6 is up! 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.<br /> 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.<br /> Later. You can be sure of it.Gail Raehttp://www.blogger.com/profile/10429291136763615708noreply@blogger.com0tag:blogger.com,1999:blog-5404136.post-86803082032490283222009-06-04T08:18:00.002-07:002009-06-04T08:22:52.717-07:00Palliative Care Grand Rounds 1.5 is up! This month it's hosted at <a href="http://dying.about.com/b/">Palliative Care Blog</a>. <a href="http://themomandmejournalsdotnet.net/2009/05/i-dont-remember-first-time-i-heard-or.html">My submission</a> 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.<br /> Later.Gail Raehttp://www.blogger.com/profile/10429291136763615708noreply@blogger.com0tag:blogger.com,1999:blog-5404136.post-33196115949675236762009-05-26T20:36:00.001-07:002009-05-26T20:36:58.626-07:00Fire and Ice<font color="#cc99cc" face="Arial">Some say the world will end in fire,<br />Some say in ice.<br />From what I've tasted of desire<br />I hold with those who favor fire.<br />But if it had to perish twice,<br />I think I know enough of hate<br />To say that for destruction ice<br />Is also great<br />And would suffice.<br /> <i>--Robert Frost</i></font><br /><br /> Oh, that's right, I'm supposed to be writing about watching <a href=""><font color="#ffcccc"><b>The Ballad of Narayama (1983)</b></font></a>. 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.<br /> 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.<br /> 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.<br /> 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.<br /> 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.<br /> 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 <a href="http://www0.epinions.com/review/mvie_mu-1095798/content_156748320388">here</a> (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 <a href="http://www0.epinions.com/review/mvie_mu-1033087/content_154796461700"><font color="#ffcccc"><b>The Ballad of Narayama</b></font></a> (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):<blockquote><font color="#cc99cc">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.</font></blockquote> 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.<br /> 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.<br /> 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.<br /> 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:<br /><font color="#cc99cc" face="Arial">I think I know enough of hate<br />To say that for destruction ice<br />Is also great<br />And would suffice.</font><br /> Later.Gail Raehttp://www.blogger.com/profile/10429291136763615708noreply@blogger.com2tag:blogger.com,1999:blog-5404136.post-29906367566629486452009-05-26T14:01:00.000-07:002009-05-26T14:02:47.603-07:00As seems to be happening fairly frequently of late......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 <a href="http://www.cinegeek.com/DVDREVIEWS/2008/ballad_narayama.htm"><font color="#ffcccc"><b>The Ballad of Narayama</b></font></a>. 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.<br /> Later.Gail Raehttp://www.blogger.com/profile/10429291136763615708noreply@blogger.com0tag:blogger.com,1999:blog-5404136.post-57071572234369191502009-05-26T13:30:00.002-07:002009-05-26T18:38:30.160-07:00I don't remember the first time I heard (or, perhaps, read) the word "palliative"......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 <a href="http://dethmama.blogspot.com/">The Dethmama Chronicles</a> and, through those, <a href="http://www.pallimed.org/">Pallimed</a>. 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).<br /> 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.<br /> Finally, about a month ago, after reading one of the posts incorporated in the latest edition of <a href="http://medicalfutility.blogspot.com/2009/05/palliative-care-grand-rounds-v4.html">PCGR</a> entitled <a href="http://little31k.wordpress.com/2009/04/05/cancer-npr-and-thoughts-on-medical-treatment-in-the-us/">Cancer, NPR and thoughts on health-care in the U.S.</a>, posted at <a href="http://little31k.wordpress.com/">Words from a Witness</a>, 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:<ol><li><font face="Times New Roman"><b>pal•li•a•tive</b>,<b> <i>adj.</i></b> serving or tending to palliate; specifically, <i>a)</i> alleviating. <i>b)</i> excusing; extenuating.</font></li><li><font face="Times New Roman"><b>pal•li•ate</b>, <b><i>v.t.</i></b> [< L. <i>palliatus,</i> cloaked < <i>pallium,</i> 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.</font></li></ol> Notice, in the above two definitions, although it's possible to imply medical application, medicine is not mentioned. Fast forward to The New Oxford American Dictionary, Second Edition, © 2005:<ol><li><font face="Times New Roman"><font face="Arial"><b>pal•li•a•tive</b> ►<i>adj.</i></font> (of a treatment or medicine) relieving pain or treating a problem without dealing with the underlying cause.<br /><font face="Arial">►<i>n</i></font> a remedy, medicine, etc., of such a kind.</font></li><li><font face="Times New Roman"><font face="Arial"><b>pal•li•ate</b> ►<i>v.</i> [<i>trans</i>]</font> 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).</font></li></ol> 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 <a href="http://little31k.wordpress.com/2009/04/05/cancer-npr-and-thoughts-on-medical-treatment-in-the-us/">Words of a Witness</a> led me.<br /> The post, written by Kirsten, who authors <a href="http://little31k.wordpress.com/">Words of a Witness</a>, was prompted by an NPR interview in which Terry Gross of Fresh Air <a href="http://www.npr.org/templates/story/story.php?storyId=102638208">spoke with Dr. Robert Martensen</a> about his book <a href="http://medical-books.medindia.com/1-13996-0374266662-A_Life_Worth_Living_A_Doctors_Reflections_on_Illness_in_a_High_Tech_Era">A Life Worth Living</a>. 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.<br /> As I read the post, though, I couldn't help but focus on a completely different issue. Let me quote myself from <a href="http://little31k.wordpress.com/2009/04/05/cancer-npr-and-thoughts-on-medical-treatment-in-the-us/#comment-11">the comment I left</a>: "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."<br /> 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.<br /> 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.<br /> 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.<br /> 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.<br /> 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.<br /> 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?<br /> 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 <a href="http://www.healthstudies.umn.edu/nunstudy/">The Nun Study</a> and <a href="http://www.nytimes.com/2009/05/22/health/research/22brain.html">another study</a> 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:<blockquote><font color="#cc99cc">“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.”</font><br /><br />More optimistically: <font color="#cc99cc">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.<br /><br />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.<br />“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.”</font><br /><br />Finally: <font color="#cc99cc">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.<br />“You don’t play with them, period,” Ms. Cummins said. “You’re not cruel. You’re just busy.”<br />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.<br />“People stop playing,” said Norma Koskoff, another regular player here, “and very often when they stop playing, they don’t live much longer.”</font></blockquote> 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.<br /> 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.<br /> 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 <i>liked</i> being alive, even in her last hours and minutes, even when it didn't feel very good.<br /> I know. I know. Dementia displays in myriad ways. Someone, like a certain caregiver in <a href="http://www.hbo.com/alzheimers/memory-loss-tapes.html">HBOs The Alzheimer's Project: The Memory Loss Tapes</a>, 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.<br /> 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 <a href="http://themomandmejournalsdotnet.net/movies/archive/2006_12_24_archive.html#tsc"><font color="#ffcccc"><b>The Santa Clause</b></font></a>, 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.<br /> 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.Gail Raehttp://www.blogger.com/profile/10429291136763615708noreply@blogger.com2tag:blogger.com,1999:blog-5404136.post-40677864191361370082009-05-14T04:29:00.002-07:002009-05-14T04:38:41.406-07:00My series of reviews on The Alzheimer's Project My review of the <a href="http://www.hbo.com/alzheimers/momentum-in-science.html">Momentum in Science</a> episodes and 14 of the 15 (the supplemental on <a href="http://www.hbo.com/alzheimers/supplementary-the-demoe-family.html">The Demoe Family: Early Onset Alzheimer's Genetics</a> still hasn't been uploaded to the HBO site) supplemental films is <a href="http://open.salon.com/blog/gailrae/2009/05/13/the_alzheimers_project_alzheimers_101a_b_c">here at Open Salon</a>.<br /> My review of the <a href="http://www.hbo.com/alzheimers/caregivers.html">Caregivers</a> episode is <a href="http://open.salon.com/blog/gailrae/2009/05/14/the_alzheimers_project_yikes">here at Open Salon</a>.<br /> Now Mom and I can go to bed.<br /> In her words, "It's about time."<br /> Later.Gail Raehttp://www.blogger.com/profile/10429291136763615708noreply@blogger.com0tag:blogger.com,1999:blog-5404136.post-30054710592379454552009-05-14T03:00:00.002-07:002009-05-14T03:09:45.566-07:00I guess it's no longer true that I don't feel my mother with me. 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...<br /> ...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...<br /> ...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...<br /> ....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..."<br /> "...we're having a party!" I quickly interject...<br /> ...she chuckles and winks at me. "Aren't we?!?"...<br /> ..."We must be," I agree, "why else would we be up at three in the morning?!?"<br /> ..."You know," she says, turning to gaze out the cathedral windows, "I don't know why, I've always loved this time of night..."<br /> ..."So have I," I say...before I continue typing...<br /> ...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...Gail Raehttp://www.blogger.com/profile/10429291136763615708noreply@blogger.com2tag:blogger.com,1999:blog-5404136.post-2372073700237957412009-05-12T12:55:00.003-07:002009-05-12T13:18:22.609-07:00Late breaking information! In case you're curious to know more about the life of Josephine Mickow and her daughter, featured on <a href="http://www.hbo.com/alzheimers/memory-loss-tapes.html"><font color="#ffcccc"><b>The Alzheimer's Project: The Memory Loss Tapes</b></font></a>, the daughter publishes on a blog, <a href="http://maplecorners.blogspot.com/">Maple Corners</a>, as "Annie". It's multifaceted, not strictly a "caregiver's blog" (whatever that means), forthright and there's more <a href="http://maplecorners.blogspot.com/search/label/Art">Art of Alzheimer's</a>, as well as an example of Josephine's <a href="http://maplecorners.blogspot.com/search/label/Pre-Alzheimer%27s%20Art">Pre-Alzheimer's Art</a>. 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 <a href="http://www.hbo.com/alzheimers/">The Alzheimer's Project</a>.<br /> 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.<br /> Later.Gail Raehttp://www.blogger.com/profile/10429291136763615708noreply@blogger.com0tag:blogger.com,1999:blog-5404136.post-54212226248288643952009-05-12T09:55:00.002-07:002009-05-12T10:02:42.492-07:00My intention, all along......has been to review all episodes of the series of programs under the HBO umbrella title <a href="http://www.hbo.com/alzheimers/">The Alzheimer's Project</a>. Before I discovered <a href="http://open.salon.com/cover">Open Salon</a> last week, my plan was to write them all here; which I more or less did with the first review of the first program.<br /> Since discovering <a href="http://open.salon.com/cover">Open Salon</a>, in order not to duplicate myself, as of the review for last night's program <a href="http://www.hbo.com/alzheimers/grandpa-do-you-know-who-i-am.html">Grandpa, Do You Know Who I Am?</a>, 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 <a href="http://open.salon.com/blog/gailrae/2009/05/11/the_alzheimers_project_tell_me_a_story">here</a>.<br /> Don't worry, I'll be back soon!<br /> Later.Gail Raehttp://www.blogger.com/profile/10429291136763615708noreply@blogger.com0