Apologia for these journals:
They are not about taking care of a relative with moderate to severe Alzheimer's/senile dementia.
For an explanation of what these journals are about, click the link above.
For internet sources that are about caring for relatives with moderate to severe
Alzheimer's/senile dementia, click through the Honorable Alzheimer's Blogs in my
links section to the right.
Although 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.
Does it bother me to listen to the interviews and hear my dead mother's voice? Not at all. I hear her voice all the time inside my head. Does it make me miss her more? I don't think so. I continue to miss her "to the umpteenth degree", as she might have said, and expect this to continue through the rest of my life. I'm just living with it, and, a year and a half after her death, a bit (not a huge amount) better than I did earlier on. I enjoy transcribing the interviews, though. I love hearing her voice and remembering all aspects of her presence. Yes, I continue to wish she was still here, beyond reason, of course, or that I was "there", where ever she is. I continue to feel slammed against the wall by the fact of death in a way I'd not experienced before her death. I used to think/feel that death was "right", or, at least, was able to accept it in the scheme of things. Now? Well, let me just say that I'll be glad when my life is over so that whatever happened to her will finally happen to me, even if that "whatever" is oblivion. Yes, I've "made new friends", gotten closer to others, but I've also, finally, faced the cruelty innate in the death of life of losing someone and experiencing a hole from that loss that will never be filled and will never not be there. This is the first time I've not adjusted to the consequences in my life of the death of others. It's okay with me if I never do, in part because, as I come into contact with others I see the hollows in their souls, now. I never did, before; wasn't even aware that soul-hollows existed. Somehow, it seems kinder that I can see and relate to those hollows, now.
I'll post again each time I add a new transcript, of all which will be added according to the dates they were made.
For 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. Here's the link.
I'm continuing this journal...
...in a new edition, After the Mom & Me Journals dot Net. I've just published my first post over there, an apologia for that section of the journals. Chances are, I won't be publishing anymore posts here.
Just wanted you to know.
Probably (but, you never know) not later, at least not here, but definitely later there.
Okay, so here's the scoop.
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:
Some of you who host blogs on Blogger probably already know this. What it means is that unless I go through their ridiculous process of redirection to their custom domain service, I will not be able to publish under my domain name anymore. I've been giving this a lot of thought ever since Blogger's announcement in February. I'd already decided not to avail myself of their custom domain service, but I wasn't sure how I was going to handle everything, otherwise. Tonight, I finally got the courage to migrate one of my blogs over to their blogspot server, which I used once before. The migration tool doesn't actually do what it promises, which is to ensure that when you click a link in the newly minted blogspot blog that points to another area within the same blog but carries the old url, it will easily and efficiently redirect these links. It does redirect them, but not to the link, rather to the index page. However, one thing I realized is that while FTP publishing may be turned off on May 1st, Blogger has no way of deleting what already exists on my domain server. Thus, I am going to migrate my blogs to blogspot urls the old fashioned way (which actually takes scads less time), not worry about links, and all the old material that was published and linked around before the migration will still be available at its old urls.
I know it must seem that I've given up the ghost on this journal, and for some sections I have. I still have strong urges to publish about particular aspects of aging and caregiving, though, even though I've not been doing this online, just writing posts in my head. I plan to get going again. I will likely, in fact, start a new after-caregiving journal section to contain these posts. I'll make sure there is a redirection post when I do this.
Obviously, many of the sections of this journal closed themselves off because they are finite in time. The only ones that I may update are In Sane Grief, Essaying the Situation, Movies, Mom & Me and, maybe, Caring. About Food. In the meantime, this post is notification that you can now find updates to this journal at http://.blogspot.com/. Once again, if I decide to continue in a new edition of this journal, I'll include a redirection link here...well, at the blogspot version of this which is: http://themomandmejournals.blogspot.com. Otherwise, all links should continue to operate, since the FTPed version of this journal will continue to exist on my domain server. I've also included "final" posts at each of the other sections of these journals, directing readers to the new blogspot locations.
Maybe we'll be communicating again soon! Might be fun!
Later, I think.
On this date and at this time last year...
...my mother's body was leaving our home for the last time.
It's been a year.
Funny, but it wasn't my possible reaction to today that's been capturing my anticipation for the last few months. It was my reaction to yesterday, December 7th, the last, most confusing and most surprising 24 hours of my mother's life. Considering how those hours went down, last year, and how I've been vividly reliving, in memory, the parallel six months of last year, I was not looking forward to yesterday. Our first winter storm of the year started early in the morning yesterday, though, and continued well into last night. If you're a regular reader of these journals, you won't be surprised to learn that I was ecstatic. The storm began as driving rain. Of course, I headed out in it to do errands. Impossible for me not to get right out in a storm. Once the snow started, I was home, snuggling with my cats and watching this area turn into its usual snow storm Christmas card ambiance. Wonderful! It didn't stop me thinking about last year, but the storm overlaid all my thoughts with snow-storm-elation, so I had a good day.
At 2325 last night, just about the time, last year, when I began to wonder if my mother and I were conducting her death watch, the power went out and stayed out until 0805 this morning (minus a few teasing surges every couple of hours). Now, this is something you don't know about me: I LOVE emergency living situations. I was introduced to them, long term, on Guam when I was of elementary school age. We lived through Typhoon Karen in 1962. Yes, (now called) Super Typhoon Karen was so significant that Google lists 247,000 pages that mention it. Wikipedia has an article on it. The tropical storm name "Karen" was retired for the Pacific. I looked through a smattering of first-listed articles to try to determine how long we went without power and running water. No luck. My memory tells me it was at least a few weeks. I can tell you that, for us girls, life was exhilarating during that time, during and after the storm. Our home, which was a sort of pseudo quonset, without the round tunnel construction but made out of corrugated metal and held to the ground with guy wires, sustained some damage but not enough to render it unlivable. We had a constant cook-and-water-boiling fire outside during the day into the evening. My father would pick up drums of water from one of the bases for us. In the area we lived, called "Old NCS", although no longer owned by the military, all houses that weren't quonsets were destroyed, as well as a club, a community church and a weather station near our home; all of them were standard concrete structures. During the days we kids would happily plunder the remains of the destruction. In the evenings we'd prepare and eat dinner al fresco and continue to take our usual evening walks around the area with our intrepid dachshund, Fritz. I loved the experience. I seem to remember that my sisters did, too. I doubt that my parents relished it but I don't remember them ever complaining. You just did what you had to and went on. After that experience, I tend to think I can live through anything.
So, last night was nothing, except that it distracted me from obsessing about Mom's last night on earth. That was nice. Today, with the sun flooding in the front windows, the house warming nicely (it got pretty cold, last night, without power), I'm imagining that the storm was perfectly timed...maybe even "engineered from beyond" to get me through the last 36 hours or so without undue sadness.
Tomorrow, finally (I've postponed the trip twice, once by choice, once by life fiat), assuming I can dig my driveway out before then, I'll be heading down to Chandler for a visit with my nephew and maybe a few more members of that family. I'm looking forward to it. It comes at a good time.
I decided not to spend Thanksgiving day or Christmas day with family. Once I'd made plans, I began to feel that, this year especially, I wanted to reinstitute my usual habit of spending the holidays alone, which I haven't done for 15 years. I've been looking forward to it. Thanksgiving went well. I expect Christmas to go well, too. I'm still visiting family, just not right on the holidays.
I haven't yet put up my favorite fiber-optic tree. I expect to erect it once I return from Chandler on Thursday. I'm looking forward to that, too. I haven't decided whether to decorate it. Mostly, I want to have it throbbing and glowing in the living room in the dark. It has always been one of my favorite holiday displays.
It's been a year. It doesn't seem like that long. The worst of the remembering is over. In retrospect, it hasn't been that bad...emotional but not devastating.
Think I'll go out and survey the snow; get an idea of how much shoveling I might have to do to make sure I can get out of my driveway tomorrow.
Palliative 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.
Yes, it's true (she says with a touch of shame) I'm mentioning it because I'm in it. As you know, I haven't mentioned it, or been in it, for quite awhile, but I'm coming back and this edition is a wonderful place to restart, regardless of my presence in it. The presentation, itself, is interesting and personal to Jerry, the host on his blog Death Club for Cuties.
Over the last two weeks...
...I've gotten a couple of comments from a blogger named karen who writes about caring for her mother at home at Mom, Me and Alzheimer's. Today, (as I usually do, if the commenter has a blog) I clicked into her blog to orient myself. What a surprise! After reading a few recent posts I decided to read from the beginning of her archive up to her most recent post.
In one of her more recent posts she admits, "I am not a writer." But, you know, I am of the opinion that if you write with the intention of expressing yourself you're a writer, and, anyway, she writes in the short, succinct, meticulous, often harried, everyday conversational language of the home caregiver to An Ancient One with Alzheimer's, which makes her blog a delight to read for several reasons:
- It is chock full of all kinds of cobbled-together hints and suggestions to make caregiving easier and/or more comfortable for her mother and her. A lot of them have to do with food, drink and her mother's constantly changing nutritional peculiarities and challenges but there are loads of others, as well. The suggestions follow her day to day trials and what she's had to figure out in order to best yet another of the daily challenges.
- She's been taking care of her mother at home for well over two years. The blog begins a bit after discovering that her mother is eligible for Hospice care, which she states is not "EOL" (End of Life) hospice care. She talks a bit about how she could have used it and wishes she'd been told about it much sooner. Otherwise, in post after post she gives a clear, quotidian picture of what it is like to deal with hospice care at home.
- She follows many bloggers and other types of sites, several of which feature Alzheimer's and caregiving, and often posts about new bloggers she's found. She's also generous in passing on suggestions she's found valuable. Thus, her site is a good resource.
- She talks about home life in a realistic way, including insights into dynamics with extended family, things she does besides caregiving even though caregiving is clearly her primary and overwhelming concern and things she used to love to do and wishes she could do more.
- The family is financially strapped and she is forthright and detailed about what it is like to negotiate the extraordinary expense of caring for an elder with Alzheimer's. She pulls absolutely no punches about equipment she wishes she could afford...then, talks about how she devises in home solutions that substitute for this equipment. She talks about price and value the way you would talk with your next door neighbor.
- She loves her mom and intimately describes her and her mom's interrelationship and how Alzheimer's affects it. She also sneaks in bits about things her mother used to do. It is easy to see that she is taking care of a formidable woman, appreciates this about her, hates what Alzheimer's is doing to her mom but loves the woman to whom this is happening.
- She is frank about her experiences with institutional care in regard to her mother and continues to use it, out of necessity.
I haven't, in a couple of years, spent much time looking for caregiving blogs, let alone reading them, for obvious reasons. I'm glad, though, this woman crossed my path. One of the things I'd been mourning is that almost all the caregiving blogs I frequented have become frozen in time at the death of the care recipient, which is understandable. But, people, caregiving continues, in even greater numbers than before. I've decided to add karen to the links list at the right and reorganize my Honorable Alzheimer's Blogs list into "Static" (have stopped since the death of the care recipient) and "Current" (continue, even since the death of the care recipient, in some cases) blogs, for obvious reasons. Not that I believe the "Static" blogs are any less valuable but the fact that the care recipient has died gives the blog a different tone, I think. karen's blog will be the first in the list of "Current" blogs, in honor of her blog giving me the idea.
karen, thanks for blogging. You have no idea how valuable is your "I-am-not-a-writer" contribution to the literature of caregiving. And, by the way, you most certainly are a writer, one that I like and will continue to follow!
All material, except that not written by me, copyright at time of posting by Gail Rae Hudson