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.
    Later.
- posted by Gail Rae @ 08:55  5 comments   email  this post

 
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.
    Go. Now.
    Later.
- posted by Gail Rae @ 14:11  0 comments   email  this post

 
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.

    Her mother has recently turned another corner in the inexorable progression of Alzheimer's. As I read this, in light of the rest of her posts, I found it impossible not to reflect on how much "easier" it is to take care of someone with the type of vascular dementia my mother had (even with all her other chronic health concerns) than it is to care for someone with Alzheimer's dementia. And, yet, karen continues with courage, sadness, hope and despair, exhibiting much more energy than she believes she has, which is a chronic condition of being an in-home caregiver: You NEVER believe you have enough energy but it is amazing what you get done considering the lack of energy you think you're exhibiting.
    I haven't, in a couple of years, spent much time looking for caregiving blogs, let alone reading them, for obvious reasons. I'm glad, though, this woman crossed my path. One of the things I'd been mourning is that almost all the caregiving blogs I frequented have become frozen in time at the death of the care recipient, which is understandable. But, people, caregiving continues, in even greater numbers than before. I've decided to add karen to the links list at the right and reorganize my Honorable Alzheimer's Blogs list into "Static" (have stopped since the death of the care recipient) and "Current" (continue, even since the death of the care recipient, in some cases) blogs, for obvious reasons. Not that I believe the "Static" blogs are any less valuable but the fact that the care recipient has died gives the blog a different tone, I think. karen's blog will be the first in the list of "Current" blogs, in honor of her blog giving me the idea.
    karen, thanks for blogging. You have no idea how valuable is your "I-am-not-a-writer" contribution to the literature of caregiving. And, by the way, you most certainly are a writer, one that I like and will continue to follow!
- posted by Gail Rae @ 12:38  5 comments   email  this post

 
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.
- posted by Gail Rae @ 10:40  0 comments   email  this post

 
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".
- posted by Gail Rae @ 09:19  1 comments   email  this post

 
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.
- posted by Gail Rae @ 09:12  1 comments   email  this post

 
With 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, Jessica Knapp, I ran across an interesting document mentioned in one of her posts. It's a type of Living Will that goes beyond the typical in a variety of important ways. To quote the website Aging With Dignity, on which the Five Wishes Advance Directive is featured (along with a variety of other "aging with dignity" issues), it allows the signer to "use your words to express your wishes, communicating in a language that you understand". Aside from the usual Living Will concerns, which it allows the signer to address much more specifically than the typical Living Will, it also deals with "how you want people to treat you" and "what you want loved ones to know". My curiosity was piqued, so I clicked into the Five Wishes Preview featured on the site and discovered more than a preview. It appears that the entire structure and wording of the Five Wishes document is included in the pdf file (which can be downloaded to your hard drive by simply saving it). There is also a link on this site which states that they have reprinted the entire Five Wishes document "with permission". The reprinting matches the "Preview" in every respect. This site also cautions: "To use this as a legal document in those states that accept it, ...you MUST send for the paper version (only $5)." I doubt this. I rather suspect that this is a tip of the hat to the profit motive.
    Both files include instructions on how to legalize the document, a thumbnail history of the document's origin and specific state instructions, where applicable, regarding additional legal requirements. It also advises how to, for instance, pick someone as your "health care agent". The latter contains some surprising but, in retrospect, wise suggestions regarding who you should not appoint to this position.
    I especially like the headings in some of the wishes. Wish 2, for instance, includes the headings: "What You Should Keep In Mind As My Caregiver" and "What Life Support Means To Me". The section on what specific types of treatment the signer wishes as death approaches is divided into four parts including one entitled "In Another Condition In Which I Do Not Want To Be Kept Alive". Most provocative, though, are some of the requests under the last three wishes, all of which describe in brief yet startling detail the type of treatment one would like as one approaches death (i.e., "I wish to be massaged with warm oils..." and "I wish to have my favorite music played..." in Wish 3). "My Wish For What I Want My Loved Ones to Know", #5, includes general requests for and thoughts of forgiveness in addition to the general attitudes and demeanor the dying one wishes their friends and relatives to assume as they approach and, afterwards, come to grips with the loss of the dying one.
    If you're a regular reader, it shouldn't surprise you that I am brimming with musings about some of the aspects of the Five Wishes document.

1. As I read the standard (to the Five Wishes document) list of stipulations under the heading "My Wish For How Comfortable I Want To Be" I am reminded of the discussion my mother and I had about how much pain and palliative medicine she would want during the active dying phase. This was an important discussion for us. Although I was caught off guard by her actual active death phase and was never sure that she was actively dying, especially since she was insistent that she wasn't as long as she was able to respond to my questions about her state, I am sure that she was neither over nor under medicated from her point of view. Her awareness, as well, that something "different" was happening combined with her lack of distress over this difference allowed me to know, in retrospect, that, despite her insistence that she wasn't dying and would never die, she was aware of the experience and its uniqueness. I can't say for certain, but from my knowledge of her, I'm guessing that her awareness was to her taste, even when the experience, itself, appeared, to me, to be surprising, even, maybe, unpleasantly so.
2. 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.
3. I can easily and authoritatively imagine what my mother's reaction would have been to the requests, in the same section, involving things like music, readings, prayers, warm oil massages, etc. I can almost hear her say, "Well, if we're doing these things and I happen to die, fine. But I may die when these things aren't being done. I can't see any reason to go to any great lengths to guess when I'm dying and scurry around to do these things." In effect, that's what happened. Since we continued her life on hospice exactly as we'd be living pre-hospice and pre-lung-cancer-diagnosis, her last months, indeed, included all of the comfort requests and more that were eccentric to her. However, the only one that was specifically followed during her last hours was the oil massage. The "personal care" agenda (teeth brushing, nail clipping, etc.) was not followed during her last hours nor, for that matter, during her last day and a half, except for a much less strenuous cleaning than usual when she decided, Sunday morning, less than 24 hours before she died, that she wanted to arise, watch a movie and eat. She barely tolerated having her underwear changed when it became necessary. I certainly wasn't about to try to brush her teeth or clip her nails.
   Interesting about her nails. The week before she died I noticed as a part of our regular routine that her finger and toe nails needed clipping. They weren't unwieldy but, you know, they could've used a bit of a trim. This was normally a task I accomplished in the evening while she was watching TV, just before I rubbed her legs and arms with lotion. It was also a grooming activity she enjoyed. The last time I attempted it, though, as I started on her fingers she complained that it hurt. I thought I might have gotten too close to the quick or the finger pad, even though I was always careful with this because my mother was very sensitive to pressure on her finger tips. I pulled the clipper back to the point of barely taking off a sliver of nail and tried again. She yelped! We abandoned the task. I wonder, now, if super-sensitivity is a hallmark of a body heading toward shut down.
4. Regarding Wishes 4 and 5, which involve requests specific to the hours just before death such as the desire to have people around and how one wishes these people to comport themselves at the deathbed:
   • I find the following troublesome: "I wish to have people with me when possible. I want someone to be with me when it seems that death may come at anytime." I am reminded of something I read in both the Final... books: That it isn't uncommon for people to want to die unaccompanied and the way this desire usually plays out is that the dying one waits to expire until everyone is out of the room. I suspect that, in contemplating our deaths, we all think that we would prefer to have a loved one, or more, at our side when the moment arrives. I also suspect that it comes as a surprise to a dying one to realize they'd prefer to be left alone at that moment, so I don't see how this desire could be anticipated. Thinking about this caused me to wonder about a lot of the wishes we design for our deaths when our deaths are not on our obvious horizon.
   • One request that is startlingly absent from this section, too, is a wish to have beloved pets not only near but allowed intimate access to the dying one, if possible. I am sure that having The Little Girl, one of our cats, curled at her feet was a primary factor in keeping my mother calm as she negotiated her last, most challenging and surprising night on earth.
   • The Fourth Wish request, "I wish to be cared for with kindness and cheerfulness, not sadness", brings to mind this excerpt from the movie "Yes" I recently published over at In Sane Grief. This request sounds so magnanimous and politically correct and, yet, I wonder, how often does it happen that a dying one would prefer to see a little grief drama at their bedside; wouldn't mind if people cried and asked them not to "go"? The point I want to make is that perhaps yet another important wish has been left off this list: The desire to allow the event of death to be what it is, what the moment makes of it, and for those looking on to be sensitive enough to the dying one's condition so that if, for instance, some drama seems in order, despite what the dying one specified when dying was on her or his radar screen only as an objective possibility, not an in-one's-face reality, that drama is allowed and welcomed.
   • Wish 5 is full of politically correct attitude. Some of the wishes I can imagine most people want at their death bed: Wanting family and friends to know that the dying one loves them, for instance, unless, of course, the dying one hates their family. It's easy, though, for me to imagine scenarios of prolonged death approaches in which the dying one may wish to express stubborn desires to refuse to offer or ask for forgiveness; a desire to express bilious thoughts and feelings one last time; a desire to be assured that long standing family conflicts continue.
   • Another request in this section, the wish that family and friends remember the dying one as she or he was before the terminal illness, well, that one bothers me, too. It implies that a person is not a totality of all her experiences but only those that are easy for others to handle. I have, for instance, no desire to not remember my mother as she experienced dementia. Her peculiar path through dementia revealed so much to me about her character that I would likely have missed, otherwise. The way she died was a revelation to me. As the Final... authors assert, if it is at all true that one lives in character it is even more true that one dies in character. It seems inhumane to me to purposely tune out this last succinct character statement by insisting, as we, in this society at this time, believe is appropriate, that "me" dying or "me" working my way through a difficult disease or period in "my" life is somehow beside the point of who "I" am.
   • Wish 5 contains a few requests that make assumptions about a persons beliefs about death that may not be true but are, at this time, politically correct. One of them specifies that family and friends "know" that the dying one isn't afraid of dying and believes it is "not an end, but a new beginning for me." What if the dying one doesn't believe this? What, too, if the dying one has a preference for celebrating their approaching death as an end? What if the dying one actually is afraid of death but realizes this only as death approaches? What then? How would you want someone standing sentry to react to your fear in the maw of death?
   • The last request in the Wish 5 section that troubles me is the desire for friends and family "to get counseling if they have trouble with my death. I want memories of my life to give them joy and not sorrow." This is an attitude toward grieving in our particular society that creates an enormous struggle for mourners. It is so ubiquitous that not one of my grief support group meetings goes by but what someone doesn't express some variety of the following: "I feel obligated not to express my sorrow." Just yesterday, at a Holiday Grief Support Work Shop, a woman said that she's trying hard to keep busy so that she doesn't wallow in her sorrow. As the facilitator continued to question her it became apparent that the problem wasn't that she was wallowing, it was that she was denying herself the opportunity to experience her sorrow and travel through it. As our facilitator says, grief will have its way with you, even if you refuse to acknowledge it. If, however, you refuse to acknowledge it, grief's way will be more insidious and difficult to manage than if you welcome it. It is astonishing how many times someone in group will say, out of an incomprehensible fog, "I'm having trouble with thus-and-such and I don't understand why." Time after time our facilitator gently responds, "Because you lost your [wife, or sibling, or child, or parent]." The pressure to "get better", to recover from grief is internal and external in our society, which is one of the reasons that many grief support groups provide the support one absolutely needs in this society to insist on one's own grief needs.
     A conundrum is posed by this one wish of joy over sorrow. On the one hand, in our society, even mild grief requires special permission, so it's probably a good idea for almost everyone who is grieving to acknowledge and seek support from a community of grievers, whether that be in one's mind, among one's compatriots, in books or in a support group. On the other hand, the particular joy vs. sorrow wish continues to codify that, somehow, sorrow isn't all right, it's a perversion of living. Let me tell you, it isn't. One thing I've learned from grieving my mother is that the ability to feel profound sorrow extends one's humanity. Wouldn't it be better if, somehow, in very specific phrases, the Five Wishes document went a step or two toward acknowledging the legitimacy and multi-faceted nature of sorrow in the face of the haunting mysteries of loss and death, assuming that the dying one wanted this acknowledgment?

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

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

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

    Despite the concerns listed above, which require serious deliberation, I still think The Five Wishes Document is a serviceable overture. If nothing else, it introduces the possibility of, say, writing a cannon into the composition of your death experience.
- posted by Gail Rae @ 10:47  1 comments   email  this post