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.
Fire and Ice
Some say the world will end in fire,
Some say in ice.
From what I've tasted of desire
I hold with those who favor fire.
But if it had to perish twice,
I think I know enough of hate
To say that for destruction ice
Is also great
And would suffice.
Oh, that's right, I'm supposed to be writing about watching The Ballad of Narayama (1983). I'm including the year because a first one, made in 1958, differs from the second in important ways, mentioned in the article to which the name of the movie is linked.
I mentioned in the immediately previous post that I suspected I would be relating the movie to the secondarily previous post but I was wrong. Although the story of the movie revolves around one of the main characters, Orin, approaching the age of 70, at which time, if one lives that long, one is expected to allow oneself to be deposited on Narayama and die of exposure, the movie isn't about this. It's more a heavily symbolic piece, sometimes description, sometimes commentary, meant to compare and contrast traditional Japanese rural village existence with nature and allow the viewer to come to her own conclusions about what Shohei Imamura, the director, means to say about contemporary Japanese society circa 1983.
I began this post with Robert Frost's poem because, through the lengthy end sequence in which Tatsuhei, Orin's eldest son and primary heir, reluctantly but dutifully carries Orin close to the top of Narayama and leaves her to die in the rocks among the skeletons of thousands ("or more", as Tatsuhei mentions earlier in the film) of other fated 70-year-olds, I found myself silently chanting Frost's poem. As Tatsuhei is descending it begins to snow, something he has made it clear he hopes will happen, as a benevolent sign from the god of Narayama. Later, at the end of the movie, the fool of the movie, Risuke, Tatsuhei's younger brother, who is always singing, mostly about his elderly mother, sings, once again, about how lucky she is, this time because it snowed as she was left on Narayama. Snow is considered to be an easy type of death by exposure.
Although I could not help but read a few plus reviews and commentaries on the movie, I diverge with all that consider the movie cruel, even though it would seem, upon hearing the bare narrative of the movie, that its purpose is to depict and comment on the cruelty necessary to survive as humans. Not only is Orin left on Narayama, another dutiful son finds himself having to deposit his reluctant father on Narayama twice, having first delivered him tied in ropes through which the cunning father chewed. The second time, the son does not take any chances. He pushes his father off a precipice so that there's no possibility of return to the village. Tatsuhei witnesses this on his return from having gently deposited his willing mother to essentially the same fate. The movie does not overtly comment on which "go to the mountain" event is "better". Both are inevitable.
Village justice is also highlighted when a family, the daughter of whom has been married to Tatsuhei oldest son, is convicted of stealing food and buried alive. Since the daughter/in-law is also guilty of this crime, she is lured back to her family by the scrupulously traditional Orin in order to have the same justice applied to her.
The film artfully juxtaposes hunger, sex, birth and death among humans and animals, throughout the film. Additional seemingly simplistic but ambiguously haunting symbolism shimmers through the film: As Tatsuhei and Orin begin their journey up Narayama, Risuke, who is finally, at the age of 35, being introduced to sex by one of Orin's peers, suddenly awakens next to his consort, finds his mother's front teeth, which she earlier bashed out on a piece of stoneware in order to show that she, indeed, is not too healthy to die, declares to his bed mate that they are an amulet of rabbit's teeth and places them in his ears; After Tatsuhei returns, his wife and his new daughter-in-law are quietly shown to be wearing Orin's abandoned kimono and obi. Later, the camera lingers over a ruffle of entwined snakes; snakes in this film, according the article to which I linked the name of the film above, symbolize family and are used throughout the film to indicate fertility, family harmony and a family in trouble. While most of the family dinners have been a chicken stew, the final dinner, after Tatsuhei returns from his journey, is a stew of potatoes and eel. Check here (fourth paragraph from the bottom) if you're curious about the significance of the eel to Imamura. This review of a different Imamura film also contains the following quote which could easily apply the The Ballad of Narayama (in case you're curious to know what this reviewer thought of the film that is the feature of this post, I've connected that review to the immediately previous mention of the film's name):
Imamura is a director who despises humanity but loves individual humans. In fact, the more outrageous the individuals, the more Imamura showers them with the loving eye of his camera. Imamura seeks to expose the perverseness of human passions and social structures, such as those that led to Hiroshima or that lead daily to violent crimes on a smaller scale, but he holds out hope in the rehabilitation of individual sinners.Despite the ruckus of normal village life, all of which is shown in the story, watching the film was, for me a serene experience, even as I saw a dead male baby that had been exposed and poorly buried; an entire family victimized by village vigilante justice; several sick elders, one of whom is suffering so much she doesn't want to die of sickness, she'd rather go to the mountain; and, lastly Tatsuhei's physically and emotionally arduous trip up the mountain with his mother on his back. The film critic to which I linked in the immediately previous post regards the movie as a depiction of hard, rough life and pronounces the villagers cruel to elders. Incident by incident, it's obvious that life in this village isn't easy, but elder cruelty, within their system, doesn't seem to me to exist. Those who reach the age of mountain deposition are accorded respect not only for their age, but for their "sacrifice". Their trip up Narayama is surrounded in ceremony. The "cruelty" of the children toward the elders, particularly Orin, isn't cruelty, it's actually teasing, in which Orin delights and sometimes joins. Everyone in the village is aware that, if they should live so long, they, too, will be "going to the mountain". Some handle it easily. Some don't. In this village, it doesn't matter how one handles aspects of life...they unfold, anyway.
My overall impression is that despite an attitude toward elders that natives of the U.S. would consider cruel, there are crucial differences in the way this village abandons their elders and the way we abandon ours. An ailing elder who hasn't reached the age of mountain deposition is cared for solicitously and tenderly within the family and by friends. Although we abandon our elders as surely as this village abandons theirs, ceremony and certainty, rather than guilt and angst, embrace their elders' fate. An act that seems unthinkably cruel to us is portrayed in a way that actually makes one wonder which is the crueler culture. It's hard, as well, to determine, from his direction and editing, how Imamura felt about the practice.
My research about the film after watching it indicates that, although this method of handling old age is a popular subject of Japanese myth, there has, to date, been no evidence anywhere (the most obvious of which would be skeletal remains) to suggest that any Japanese culture, past or present, ever abandoned their elders to the elements at a certain age. If this practice never existed, I can't help but wonder what sentiment the myth satisfies; perhaps it's a sentiment that eludes my own cultural background.
Frankly, as far as my own culture and its treatment of elders is concerned, I daresay I'm in good company when I hope that, one way or another, I manage to die before I become old. I'd even enjoy the idea of being deposited on top of a mountain in the snow to die of exposure while still hearty. Even if, approaching old age, I appear to be in fine fettle, well, one can never tell what the future holds; except, in this culture at this time, I can be fairly certain that the odds of me being abandoned to a miserable purgatory of social ostracism and poor quality of life, even if, somehow, I managed to luck into what we currently call "good facility care", are higher than the odds of me having a companion, as my mother had, like me. I didn't get the impression from this film that the villagers hated their elders, even though they refused to let them live beyond a certain age. I cannot escape the feeling that our culture hates our elders, even though we vociferously champion the possibility of most everyone living past the century mark. Thus:
I think I know enough of hate
To say that for destruction ice
Is also great
And would suffice.
As seems to be happening fairly frequently of late...
...I'm back after an extended absence, as you'll notice from the freshly published post immediately below. I want to mention, writing that post finally galvanized my interest in watching a movie I rented from Netflix several years ago (exaggeration, but only slight) that I expect will have a direct connection to the immediately previous post. The movie is The Ballad of Narayama. Although it may seem obvious to you, from the description of the movie to which I linked, why I haven't watched it until today, actually, it isn't the anticipation of its raw vitality that has kept it out of my DVD player: It's that I haven't wanted to think, much, about what I've been watching and I've suspected this movie is going to catalyze a lot of thought. Today, it seems, I'm ready. Stay tuned. Expect a post on the movie within the next 24 hours.
I don't remember the first time I heard (or, perhaps, read) the word "palliative"...
...its root (palliate) or any of its forms. The first time I heard it in a medical context, though, was when I learned of my mother's lung cancer diagnosis, chanted simultaneously with the diagnosing physician "no treat", and we were referred to Hospice. When Mom's Hospice liaison was assigned and she spoke the word, I was familiar with it, had a sense of what it meant: The word "subdue" skittered through my mind. I figured it had to do with addressing the possible pain and other bothersome symptoms that might occur as my mother's lung cancer progressed. After that point, though, the word was rarely used. I didn't develop more than a nodding familiarity with it until, late in my mother's life, I was introduced to The Dethmama Chronicles and, through those, Pallimed. By that time the word barely mattered, since my mother was progressing through an already good life and was so well spotted, by me and her Hospice care team, that she could not have avoided a "good" death (according to her definition, of course, which included her certainty that she would not be dying).
Since Mom's death I've become even more attuned to the palliative care movement in medicine. I'm fascinated by it, as, frankly, when I think deeply about it, it seems as though, whether a patient has opted out of curative treatment for any particular ailment or has decided to pursue treatment, palliative care has a place in almost any kind of illness or treatment that could cause uncomfortable symptoms.
Finally, about a month ago, after reading one of the posts incorporated in the latest edition of PCGR entitled Cancer, NPR and thoughts on health-care in the U.S., posted at Words from a Witness, I was moved to look up the meaning of "palliative" and its root, "palliate", in two dictionaries, on a hunch. The first is my ragged, 40 year old standby, Webster's New World College Edition Dictionary of the American Language © 1968:
- pal•li•a•tive, adj. serving or tending to palliate; specifically, a) alleviating. b) excusing; extenuating.
- pal•li•ate, v.t. [< L. palliatus, cloaked < pallium, a cloak], 1. to lessen the pain or severity of without curing; alleviate; ease. 2. to make (a crime, offense, etc.) appear less serious than it is; excuse, extentuate.
- pal•li•a•tive ►adj. (of a treatment or medicine) relieving pain or treating a problem without dealing with the underlying cause.
►n a remedy, medicine, etc., of such a kind.
- pal•li•ate ►v. [trans] make (a disease or its symptoms) less severe or unleasant without removing the cause. ■ allay or moderate (fears or suspicions) ■ disguise th seriousness or gravity of (an offense).
The post, written by Kirsten, who authors Words of a Witness, was prompted by an NPR interview in which Terry Gross of Fresh Air spoke with Dr. Robert Martensen about his book A Life Worth Living. Kirsten focused on the appropriateness of a palliative approach, particularly in regard to her mother, who is experiencing terminal breast cancer, and the difficulty of not only encouraging her mother's medical providers to assert the palliative over the curative, but encouraging her mother to adopt this approach, as well.
As I read the post, though, I couldn't help but focus on a completely different issue. Let me quote myself from the comment I left: "Not until I read your post...did it occur to me that, through my assertive medical advocation on [my mother's] behalf, she actually received palliative care in ever increasing levels through the last five years of her life...Realizing this is an “Aha!” moment for me. I had no idea I was doing this...my only regret is that her (many) physicians were more often than not our opponents as I sought this type of care for her rather than our friends. What a relief it would have been (for me...because of my efforts my mother always lived in an atmosphere of relief) if all of us had been working in concert!...I think she lived longer and I know her quality of life right up to her final breath was superior because of my “palliative” intervention. I just wish I hadn’t had to do it alone."
Until my mother was diagnosed with lung cancer and the immediate decision was made not to treat, it was an uphill battle for me, from 2002 up to the cancer diagnosis, to rigorously assert my mother's wishes not to be "poked and prodded" by medicine and to allow her to lead the rest of her life without extraordinary curative medical intervention. In the beginning, some poking and prodding seemed diligent: Attempts, for instance to determine the cause of her iron-deficiency anemia (all of which were unsuccessful), including a colonoscopy, which was pronounced a "torture" of a mistake by the internist who enthusiastically recommended and performed the procedure; interventions, all of them alternative medical treatments (non-alternative medicine refused to intervene because she was in Prescott and her PCP was in Mesa), designed to help her heal from a back injury due to a fall; a transfusion, followed by serious iron supplementation, when she had an anemic crisis; a hospital and short rehab stay after a stroke-mimicking low sodium incident; yet another transfusion in the fall of 2007 and an upping of her iron supplementation; weekly epo shots for about four weeks in an attempt to control her anemia (which worked, right up to her death); a short hospital stay for a debilitating and difficult to diagnose episode of pneumonia (which led to her diagnosis of lung cancer), followed by yet another rehab stay to help her regain enough leg strength to help me help her. My mother was not happy about any of these interventions, except the acupuncture for her back and the iron supplementation. It was typical for her to refuse any suggestion of tests or treatments. Sometimes I overrode her. Most of the time, though, in concert with her wishes and on her behalf, I battled test suggestion after test suggestion, including further scopings, bone marrow biopsies; some (although not all) blood tests (the frequency of which was really irritating my mother); medications with dangerous side effects in favor of those that did the trick more gently, or, sometimes, no medications at all. As I worked on her behalf to keep her life on exactly the even keel she wanted, I was responsible for her expulsion as a patient by two physicians. Luckily, her long term PCP always accepted her back and, from 2001 on, he and I slowly but surely came to an understanding that allowed me to opt for fewer and fewer diagnostic measures in favor of more and more palliative measures. In the final years of her life this physician, twice, took me aside and thanked me for taking such good care of my mother. Despite our disputes, he was, finally, not only convinced but appreciative of my insistence on a light-touch application of medicine to my mother.
After I'd read and commented on Kristen's post, though, I listened to the entire interview. As I listened I became aware of what seems, now, to me like the more important facet of my in-home palliative care practice: That I was "here" and "there" for her, as her companion and intimate, all the time, not only protecting her from overly aggressive medical intervention, but assuring her, by my presence and my interest in her life, that, no matter what, we were a team, we knew each other through and through, we honored each other, including our idiosyncrasies and, no matter what we encountered, we'd get through it and come out on the other end smiling, joking and enjoying life. Not only, my "cloak" of care assured her, did I know I was important to her life, I knew she was important to mine and I was rigorous in letting her know this.
The amalgamation of information that allowed me to realize this appeared throughout the interview. During part of the interview Dr. Martensen talked about his mother, 91, just as was mine when she died, who was declining, in assisted living, on Hospice, with no discernible quality of life, devastated by her own dementia, practically begging to be allowed to die. Her condition couldn't have contrasted more sharply with my mother's. Dr. Martensen attributed his mother's misery to her extreme discomfort with her dementia and her years' long assertion that she could not enjoy her life if her mind demented. This was surely playing itself out.
Later in the interview Terry Gross speculated that, while everyone (well, almost everyone; my father wished he could develop dementia; he never did) of sound mind fears the onset of dementia and assumes it will seriously and devastatingly impair their quality of life, it's not unheard that some who develop dementia do not inevitably live the life of one condemned. Dr. Martensen agreed by telling of another 91 year old woman, also in assisted living, also somewhat more deeply ensconced in dementia than my mother, who continued her optimistic, wise-cracking ways, had procured a boyfriend down the hall, was visited daily by her daughter and was experiencing a very good quality of life.
I remembered that before my mother began to dement, because of her experience with her mother's and sister's dementia, she, too, feared the possibility of dementia. Her eccentric character never allowed her to obsess over it, but, as she, for instance, over drew her checking account and I took over her bookkeeping, began to space appointments, had lapses of memory about this or that person and their lives, to which my response was to simply remind her, as often as necessary, she'd occasionally voice concern that she was "becoming like" her mother or her sister. Each time she mentioned this I'd face her fear directly, meticulously explain to her why her dementia seemed to be developing differently than theirs and assert that we could not assume what life held in store for her, especially since, even though both her mother's and sister's dementias were profound, they did not mimic one another. I'd polish the lecture by saying, "Anyway, Mom, it doesn't matter. I'm here. If you need me to take up slack, I will. If you need me to remind you, I will. One way or another, we'll get through everything together." Eventually, as I picked up more slack, as I managed more facets of her life, as I adjusted to every misstep of her memory so that, finally, neither she nor I fell out of step with one another, she relaxed. For the last six years of her life she stopped worrying about her dementia. It was handled. Well.
As I have, often, in these journals, I couldn't help but wonder, surreptitiously (because, you know, every family's situation is different when it comes to caring for their elderly and I am painfully aware that Mom's and my situation is impossible for most families to even remotely duplicate), as I listened to the interview, what distinguished Dr. Martensen's mother from the wise-cracking woman and, for that matter, from my mother. Why was Dr. Martensen's mother spiritually devastated by her dementia? Why wasn't my mother? Why wasn't the wise-cracking woman?
We don't have enough experience with dementia, the declining health of the elderly and living circumstances to infer any answers with any reliability. Some of it could be due to overall character traits and life long habits of living, as suggested by The Nun Study and another study mentioned recently in the New York Times. Some of it could have to do with the cause of the dementia. Some of it may have to do with the effect of comorbidities on the mental and emotional health of the Demented One. There's one possibility, though, that we're avoiding like the plague: Maybe part of the difference in how people adjust to their own dementia and physical decline is directly related to how their relatives and acquaintances adjust to it: Whether those in their closest social arenas bother to adjust to it, or flee from it for any of a variety of reasons, most of these reasons caught up in the attitude that, as a people dement and decline they become strange, no longer worthy of whatever attention they may need to remain in our quotidian lives. Several comments culled from the residents at the Laguna Woods retirement community mentioned in the NYT article linked above, where lively, floating games of contract bridge are often the ultimate judge of whether someone deserves to be helped to remain in the game of life, put it succinctly:
“When a partner starts to slip, you can’t trust them,” said Julie Davis, 89, a regular player living in Laguna Woods. “That’s what it comes down to. It’s terrible to say it that way, and worse to watch it happen. But other players get very annoyed. You can’t help yourself.”These statements, although they are uttered by the oldest among us already in secure retirement facilities, are excellent representations of thoughts we all, in this society, have, statements we all make, actions we all take, when confronted with declining, dementing relatives. The rhythm of our lives in this society, so far, cannot, except under extraordinary circumstances and with effort that is, realistically, impossible for most people to manage, accommodate the rhythm of those of us who decline and dement.
More optimistically: The unstated rule at Laguna Woods is to support a friend who is slipping, to act as a kind of memory supplement. “We’re all afraid to lose memory; we’re all at risk of that,” said one regular player in her 90s, who asked not to be named.
For those in the super-memory club, [the possibility of medical treatments to delay, allay or prevent dementia] is too far off to be meaningful. What matters most is continued independence. And that means that, at some point, they have to let go of close friends.
“The first thing you always want to do is run and help them,” Ms. Davis said. “But after a while you end up asking yourself: ‘What is my role here? Am I now the caregiver?’ You have to decide how far you’ll go, when you have your own life to live.”
Finally: In this world, as in high school, it is all but impossible to take back an invitation to the party. Some players decide to break up their game, at least for a time, only to reform it with another player. Or, they might suggest that a player drop down a level, from a serious game to a more casual one. No player can stand to hear that. Every day in card rooms around the world, some of them will.
“You don’t play with them, period,” Ms. Cummins said. “You’re not cruel. You’re just busy.”
The rhythm of bidding and taking tricks, the easy conversation between hands, the daily game — after almost a century, even for the luckiest in the genetic lottery, it finally ends.
“People stop playing,” said Norma Koskoff, another regular player here, “and very often when they stop playing, they don’t live much longer.”
So, we leave out of the equation the possibility that accommodation by those who know the elder well may make a difference in the quality of the elder's life. We don't talk about it because we can't. Knowing that our lives are not set up to allow for the type of accommodation that is necessary, it's too painful to consider. If it turns out that the quality of care extended by others to the declining and demented, especially others to whom the affected have cemented life long connections, makes an apt difference not only in the trajectory of dementia and physical decline but in the quality of life and the desire to remain alive, well, damn, WHAT CAN WE DO? Our lives are, we believe, out of our hands, thus, our demented elderly must slip through our fingers. In any case, since few of us can manage the tasks of close companionship and care, the chances are excellent that we won't soon discover whether such care offers any benefits to the care recipient. We will only be able to extrapolate from the effects of rudimentary companionship and care and those extrapolations will likely be unconvincing. Thus, those of us not in decline, those of us not experiencing dementia, will continue to have little reason to reconsider our roles in the lives of our declining, dementing loved ones.
How does all this relate to in-home, family extended palliative care? I'm not sure. I wonder, though, how much of a palliative effect my willingness to live my mother's life with her had on not just her felicitous experience of her own dementia, but on her quality of life, on her insistence on remaining alive, because, you know, she liked being alive, even in her last hours and minutes, even when it didn't feel very good.
I know. I know. Dementia displays in myriad ways. Someone, like a certain caregiver in HBOs The Alzheimer's Project: The Memory Loss Tapes, can go the excellent distance in home care and, still, her mother develops profound dementia, although her quality of life appears to be excellent. Yet another caregiver in the series takes care of her husband through the enhancement of a skilled nursing facility and, still, her husband, also profoundly demented, mentions how lucky he, and "we" are. Quality of Life? Probably excellent. Yet another local family with whom I'm familiar goes the distance with home care and remains convinced that their mother's quality of life was "poor for a very long time"...and, in addition, the husband reveals, the stress of caring for the mother was so treacherous that his wife "dropped dead" from stress related illnesses a few months after the mother died.
I can't help but raise the issue, again, though, and again, based on my own experience. I am certain, had I, early in the game, thrown up my hands, declared caring for my mother impossible, decided it was not worth the dedication it would call forth from my life and activated her long term care benefits, her dementia would have become profound; she would have, at some point, felt trapped in and resigned to a life of poor quality; she would have lost her desire to awaken yet another day; she would not have lived nearly as long as she did; she would not have, less than 24 hours before she died, insisted on "getting up", even though she was weak, shaky, confined to the wheelchair and needing to be securely propped, watched The Santa Clause, one of her favorite Christmas movies, with obvious pleasure, chatting amiably with me, as always, about the "realistic" North Pole scenes; savored a croissant and glasses of OJ and ginger tea.
Palliative care isn't only a medical offering. It's the cloak family and other loving members of our communities extend to our Ancient, our Demented, our Infirm. It's the protection and alleviation inherent in not only medical advocation and morphine but managing the lives and, ultimately, becoming the close companion of those who need our care in order to continue a quality existence. These days we receive this first and most important palliative care from our families and friends only if we are lucky. Maybe, in order to leave palliative care less to luck and more to expectation, as we expand the influence of palliative care in medicine we need to raise an awareness within society that, well, true palliative care begins, that's right, at home.
All material, except that not written by me, copyright at time of posting by Gail Rae Hudson