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.
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!
Yet another "change" registered...
...this morning at the Official "More Changes" Post. The link will take you directly to the amendment. This one is about garbage, an important change that provoked MUCH further thought and research. It's so significant a change that I can't imagine how I could have forgotten it, except that it's such a quotidian concern that I think about it at least a few times a day when I throw something away and realize how little I am throwing away, now, so I no longer find considering it startling. The highlight of the post is information about the dilemma of adult disposable incontinence products and links to further opinions and resources.
It's about Ethics, Isn't It?
I've been "away" from following Palliative Care Grand Rounds (the link is to its latest edition which is excellent, as usual) for a long time; just as I've been "away" from just about everything with which I was in touch prior to my mother's death. Lately, though, I've been stumbling back, which, I guess, is obvious in my sudden, recent interest in posting again. As I perused this month's edition of PCGR I was introduced to the website Death Club for Cuties: Caring for patients and families at the end of life. The post featured in this month's PCGR was an abstract for a presentation about, to quote: "Blogging as a tool for professional development, and for enhancing communication among palliative/end of life (EOL) caregivers." Interesting subject. Once I finished that post, though, I was drawn to this blogger's most recent, linked here: My First E(nd of) L(ife) N(ursing) E(ducation C(onsortium) Presentation. Don't let the dry title discourage you. The post is a presentation he gave to the Consortium about ethics, particularly medical practice ethics at the End of Life (often abbreviated "EOL"). I recommend it to all involved in caregiving for the Ancient and Infirm. Aside from this, though, one part of the post resonated with me as I continue in the wake of watching Tokyo Story, the movie featured in my immediately previous post (to which the movie title, back there, is linked).
Scuttle down in the Death Club for Cuties post just past the graphic of the cover of the book "The Long Winded Lady" by Maeve Brennan. Read the quote lifted from one of her columns (cited in the post). Notice the phrase that Jerry, the blogger who wrote the post, highlights: the impulse toward good involves choice, and is complicated, and the impulse toward bad is hideously simple and easy.
It's true that, in the post about the movie, I leaned toward moral relativism, except at the end. I often do that, on my ethical way to making a moral decision...I think it's one of the standard landmarks for people who make the effort to think their way through to a decision about what is the right action to take. When I read the above Brennan phrase, though, I realized that Ozu was subtly making the same point in his movie. The decisions made by sons Koichi and Keiso and daughter Shige were the easy choices. In one case, Koichi's decision to put off a city tour because he encountered a Sunday emergency involving one of his patients and, as well, to disallow his wife and sons from going ahead with the tour because no one would be left at home, seems like "the right" decision, especially since Noriko, the daughter-in-law, rescues the tour. It also seems like the "hard" thing to do. Later, Shige's and Koichi's combined decision to pack their parents off to the Atami spa and resort seems clearly wrong, the "easy" thing to do. The catch, though, is that in both cases there are alternatives that aren't considered and alternatives that are connected to decisions made long ago, sometimes by agents only peripheral to the lives of the adult children and of which I was only made aware in the commentary, which gives us this snippet about Japanese life at the time: Koichi is clearly a physician of mediocre status as evidenced by his office being in his home, not being able to afford a nurse and not being in league with other physicians to whom he can refer calls. In addition, there is the obviously long standing decision on the part of all the children, including the "virtuous" daughter-in-law, that it has always been easier not to closely attend to the lives of their parents once they each fledged the nest.
I can't say that I agree that the easy action is always the wrong action. As one develops as a caregiver to an Ancient and/or Infirm One, if one has even an ounce of compassion for one's care recipient, "easy" comes to have multiple meanings. A good case in point is when I decided to allow my mother to be entered into five days of respite care while I prepared for her return home from the hospital after an especially debilitating bout of pneumonia which led to her lung cancer diagnosis. I thought this would make reassembling the house and recuperating, a little, from having literally lived at the hospital while she was there "easier". Even though I visited her frequently over those five days, more frequently than I had intended, my absence in her life was so overwhelming for her that it became debatable, in retrospect, whether putting her in respite care had been a good idea, for her or me. Shortly on its heels, though, another situation cropped up in which it was clear that she needed intense, short term physical therapy in order to regain enough of the strength she lost during her pneumonia (it was judged by both a doctor and a physical therapist that she was capable of regaining this strength) to negotiate being at home. For a variety of reasons having to do with Medicare and hospice regulations, we had to sign her off hospice for a bit and sign her into a Skilled Nursing Facility in order to accomplish this. This episode wasn't pleasant, either, but it was the "right" thing to do, it worked...and it was "hard", on both my mother and me. The "easy" respite episode, though, became "hard" almost immediately after it began. This clears up nothing about which decision was "right"...nor does it take into account the subsequent decisions, in response to her reaction to not being at home, that I made about how to tend to my mother while she was in respite care, all of which made the experience "harder" on me but "easier" on her.
Once someone becomes aware that an Ancient and/or Infirm One needs extra companionship and care, it is impossible to avoid the daily intrusion of ethical dilemmas, all of which, from the very first dilemma regarding who should offer this care, are sticklers. They all involve the consideration of what you, as a caregiver or onlooker, can live with and what it takes to live with your decision. I think a handy rule of thumb is this: If living with your decision involves blocking out anything involving the one you know who needs care, like, for instance, blocking out the loneliness your Ancient or Infirm One experiences because you are not particularly present in her life, blocking out the possibility of medical mistakes being made because you've left medical advocation up to the medical professionals without question, blocking out the day-to-day life of your Ancient One because there doesn't seem to be a way to incorporate it into your own life, well, that's probably the point at which you need to question the decision you've made. I know, this doesn't make it easier. After all, what about the parts of your life that you have to block out on behalf of the needs of your Ancient or Infirm One?
This is where the post gets really interesting. Search the word "compassion " (with a space after it) in the article. It will bring you to the following quote Jerry lifted from "Human Relationships at the End of Life", published in the "Journal of Hospice and Palliative Nursing":
While it may sound simple to suggest that compassion serve as the underlying moral foundation to guide our response to suffering, true compassion actually requires great courage. It involves being open and available to suffer with, instead of recoiling from the suffering experience.Ultimately, Tokyo Story explores the lack of compassion and how "hideously easy", to quote Maeve Brennan, it is to avoid the compassionate response; how easy it is to think you're being compassionate when you're not; how easy it is to think you will always be driven by compassionate urges when life gets complicated; how easy it is to become so confused by life's complications that trying to decide on a compassionate response is quite like feeling around in the dark in an unfamiliar house for a light switch.
We all wish it was easier. But it's not. Read the post. Bookmark it. I think it's always a good idea to remind oneself, every once in awhile, to think ethically and how much compassion figures into making an ethical decision. It's "easy" to neglect to do this...because it's so damned "hard".
Yesterday I watched a movie that I now consider...
...the best and most extraordinary cinema revelation about relationships in families that include Ancient Ones: Tokyo Story. I stumbled across it because I have an affection for Japanese cinema and Netflix' cyberbot, noticing this, recommended the movie. The brief description was intriguing: "Director Yasujiro Ozu focuses on an elderly couple in post-World War II Japan who travel to Tokyo to visit their children. The parents are received coldly by their two children; the only one who is happy to see them is their widowed daughter-in-law. The children shuttle their aging parents off to a health spa in an attempt to get them out of the way, a decision that could come back to haunt them."
Yesterday I discovered that the movie is so much more than the abbreviated, inaccurate description. I was so touched by the movie that, for the first time since I've been watching DVD productions of movies, I turned on the commentary while watching the movie a second time, partly because it seemed to me that the English subtitles were unfair to many of the subtleties inherent in the Japanese conversation and I wanted to know more. Not only was I right about that and satisfied with the further information the commentary provided, I discovered that Roger Ebert's review, to which I've linked the title of the movie above, captures the intent and tone of the movie much better than anything I've read about it since my viewing, despite a few inaccuracies: The camera, for instance, actually moves twice in the movie, rather than once, both movements being important and startling; and the entire family does not attend the tour bus outing...only the parents and the widowed daughter-in-law. A salient point is made, in fact, by the absence of the other family members on this tour.
I learned through the commentary that Ozu, the conceptualist and director of this movie, considered Tokyo Story his "most melodramatic movie" within a body of work that is decidedly not melodramatic. The melodrama is subtle, though, and excused during the final scenes of the movie as a reflection of the melodrama individuals tend to use as a daily filter while considering events of the day, or previous months or years. At the end of this movie there are no good nor bad characters, no one receives a narrative comeuppance and the character we've come to view as the most virtuous, Noriko, the widowed daughter-in-law, reveals her understanding that she considers herself, for good reason, no better than the character we've come to view as the least virtuous, Shige. The character who is most disturbed by the actions of her siblings, the youngest daughter Kyoko, an unmarried schoolteacher living with her parents, is shown to be harboring the fierce judgment of youth, a judgment that is simultaneously defended and criticized by Noriko. The narrative, we come to understand, is fairly inevitable. Much of what we decide or refuse to feel and do in regard to not only our relationships with our Ancient Ones but with our peers and our Young Ones exists within the complicated and often confounding interweave that is our lives. Maybe we can do better but maybe we can't.
The movie was released in 1953. Aspects of Japan's recovery from WWII and the effect of this recovery on traditional culture are primary but, viewed against the backdrop of today's world, are beside the point. Everything about contemporary life that renders extended family relationships, as well as the safety net we imagine they used to offer, challenging, if not downright impossible, is in this movie: Geographical distance; the political desires of a nation versus the social desires of a family; workplace status and demands versus family status and demands; traditional beliefs versus reality; accelerated change and how it affects not only what we are able to do with our lives but our desires and dreams.
Despite this, the movie is far from depressing or dictatorial. As I watched I was reminded of the times, while being my mother's companion, when I so badly needed my own space that I would go on "vacation", even while remaining her companion and caregiver, one of which is discussed here. It reminded me of the bubbles of family resentment that would occasionally rise to the surface and cause me to confront issues that I knew could be resolved or settle myself with my situation in a psuedo-Zen fashion that allowed me to, yet again, accept the situation, even be glad for it. It reminded me of the times when, for a variety of reasons, I felt inadequate to the tasks of being my mother's companion and caregiver and of the strategies I used to cope my way out of my feelings of inadequacy. Most importantly, it reminded me of the many, many times I attempted to question my involvement in my mother's life from her point of view and repeatedly rededicated myself to the idea that the situation we created was the best for her...and me. The movie brought to mind two important questions that remain unanswered to my satisfaction: Was I ever right? Was I ever wrong?
We tell ourselves so many stories about family and community: Legends about extended families and watchful communities in which everyone was included; Interpretations of modern families and seemingly dissociative communities in which everyone exists on some sort of misfitting outskirt. It is always possible to modify our behavior, for good or ill, toward family and community by scrutinizing what we think of as the reality of our lives against what we "remember" and what we ultimately want for ourselves, our family and our community. Whether it is possible to ever truly know whether we're doing "right" or "wrong", though, Tokyo Story tells us, remains a mystery. Is the loneliness that seems to plague the lives of the parents and the daughter-in-law in Tokyo Story "bad" and capable of being adequately addressed? If so, how long will this address remain viable within this family as it grows and changes? Is the attention paid to the parents by the single daughter and the widowed daughter-in-law "good" and assured in the future? It depends...it all depends...on what tomorrow brings, then that depends on the next day and the next, and yet we can never be aware of anything except what has happened and what is happening now. Even that awareness is so colored by where we are standing at any particular moment that, well, it all depends...
Of course, attention to the lives and needs of all family members is desirable, just as our well-known proverbs tell us it is, says Tokyo Story. And, yet, watching and thinking about the movie reminds me that, well, water finds its own level. We construct ways to collect or direct it to our purposes, purposes we consider important, even necessary, to life. Sometimes we are able to accomplish control of water for decades, centuries, even millennia. Our control of water alters our lives, as does our dependence on our control. Eventually, though, water flows where it will and we are bound to be caught up in it, either floating with it or struggling against it. Which is "right"? Tokyo Story tells us that we may not ever know for sure, but it's never a bad idea to examine, speculate, accept or reject and try, again; it's natural...it's life.
If you have an interest in and/or appreciation for movies about families that include elders, watch Tokyo Story. At least twice. The first time, if you are or have been a caregiver, an elder family member or have/had a caregiver within the family, you'll probably flinch from recognition of yourself in one of the archetypes. The second time, though, you are liable to consider yourself more kindly...and, as yet another proverb states, if you are kind to yourself you are much more likely to be kind to others.
All material, except that not written by me, copyright at time of posting by Gail Rae Hudson