Have you heard the one about the old guy...
...who was dying for twenty years before he actually died? He had so many conditions and was on so much medication for those conditions that his children called him "garbage head". His daughter labeled the quality of the last five years of his life "horrific". But, he wouldn't die. He was terrified of death and hung on through impossible odds, all the while, without overt intention, becoming harder and harder to care for and sapping the energy from everyone to whom he was related, especially his wife, who was his primary caregiver. Finally, in exasperation, one of the couple's friends, a physician, mentioned to one of the children that the wife, their mother, was taking "too good care of him." The friend recommended that the family place him in a nursing home, that this would ensure that the man would be dead in "three weeks." Ba da boom.
    How about this one about the just-this-side-of-middle age couple, wonderful marriage, great kids? Nine years after their wedding the husband is diagnosed with MS. The wife, who describes herself as a "Mary" rather than a "Martha", the names referring to Lazarus' two sisters, Martha being the natural caregiver, Mary being the natural intellectual, automatically kicks into advanced caregiver mode, a set of character traits with which she is not only unfamiliar but for which she has no talent. She discharges this role valiantly for fifteen years. Finally, the level of physical care her husband needs is so all encompassing and invasive that she realizes her caregiver role is stealing everything that is wonderful about their marriage and her life. With the help of a friend she decides to place him in an advanced assisted living facility, an excellent one. Once the professionals are in charge of handling his physical needs the couple's relationship improves so significantly that both she and her husband are grateful for the decision and the woman is able to write a heart wrenching essay about how much she loves this different but extraordinarily enriching marriage. Ba-da-bing.
    You were expecting jokes. I'm sorry. The above vignettes were culled from a book I'm currently reading, a series of essays by writers who have worked the role of caregiver in a variety of ways, entitled an uncertain inheritance: Writers on Caring for Family, edited and introduced by Nell Casey. The first vignette is adapted from an essay by Helen Schulman entitled My Father the Garbage Head [excerpt from essay]. The second is adapted from an essay by Ann Harleman entitled My Other Husband [full essay]. I chose to adapt bits of these two essays because they directly relate to the entire spectrum of my thoughts about the book I am about to review, Dancing with Rose and my experiences with facility care.
    I'm relatively fresh from my second reading of this book. I'm glad I decided to read it again. You may recall that I decided to read it a second time because I had remembered small sections that I found significant but hadn't highlighted during my first reading. Turns out, the one I was most interested in tracking isn't in this book. It was a musing by someone, in some book, probably one of the Final books, that it is unrealistic to expect our society, as it is now, to encourage or support those who decide to care for the aged, ailing and/or infirm at home among family. If you're familiar with any of my journal, particularly the last four years when my mother's care predictably intensified, you can probably guess my reaction to this opinion: On the one hand, I understand and support its realism. On the other, I question its smack of definitivity.
    As well, during this reading, I kept in mind a comment from one of my journal's frequent readers who considers the book "naive".
    Kessler describes working in a complex that is, clearly, of unusually high quality and seems to offer the best outside-the-home care available. Sadly, it also suffers from exactly the same problems that cause the worst of facilities to deserve their low rank: Extreme understaffing; bottom of the bucket pay and benefits (if available) for the "Resident Assistants" who do the most important work and little better pay and benefits for the administrators of the facility; the inherent greed of the corporation financing the facility and the corporation's disinterest in the purpose and quality of the facility. Thus, within a year of Kessler embarking on her journey as a Resident Assistant, staff turnover, including administrative staff, was typical of these facilities: Only one employee who worked during Kessler's term remains, the receptionist who is now an administrator.
    The first time I read the book, three chapters into it I scribbled on the inside of the book cover the word "Validation"; yes, I capitalized it. I was filled with excitement because the book validated my choice to care for my mother in our home through the rest of her life. As I continued to read through to the end, despite the generous intrusion of heartwarming snippets about the interactions of clients and staff as well as among clients, the book continued to validate my choice. After the first time I finished the book I wrote three observations on the inside back flyleaf:

1. Suppose you belong to a family with a steady number of members but the identities and characters of those members change, one by one, every month or two so that, in every year, your family was a different set of people?
2. We need to consider that nursing homes are a microcosm of how little we value people versus how much we value money.
3. It is remarkable how adaptable and resilient individual members of the human species appear to be, even when old, infirm and demented. How adaptable are we really, though?

    In light of these observations it shouldn't surprise you that I consider this book dangerous, at least mildly, if not strikingly so. I realized that if I had never stepped foot into a facility, had, at some point, considered permanently placing my mother in one because the level of care she needed seemed beyond my abilities and I had only read this book as reference, I'd probably think that facility care was a much more humane idea than keeping her at home. Thank the gods I accidentally garnered quite a bit of experience with a variety of care facilities throughout my mother's and my journey. None of the facilities in which my mother stayed, nor any of the facilities I visited and checked out in our area, except for two which were strictly assisted living facilities and expected residents to need little to no help and care most of the time, even approached the level of competence and comfort of the facility described by Lauren Kessler. Even so, this is not to say that, being a "good" facility, Kessler's facility was a good idea. One resident who arrived late in Kessler's employment who had been represented as mostly self-able but was, in fact, a resident who needed the highest level of care because he wasn't able to do much of anything for himself, including feeding himself or using a walker (and, as well, was not assigned a wheel chair), when Kessler apologized, once again, to him, for having to make him wait for a service, responded, "I guess that's my job now...To wait." I realized, at that moment, that the only times my mother ever had to wait for anything were when she was in a facility. Otherwise, without thinking about it, I considered it my job to see to it that my mother did not wait for anything. I couldn't see any reason for my mother to ever, during the rest of her life, have to wait for anything; after all, no matter how much life she had left, it wasn't much and it seemed silly to make her wait when it wasn't necessary. That's the difference between my mother living in a facility and my mother living at home. At home, with me, she did not have to take on the job of waiting.
    In addition, the kind of care that Kessler describes is extremely hard to find. It is not the kind of care that Karma describes her mother receiving in a facility. It is not the kind of care my mother received in any of the facilities in which she was temporarily housed. It is not the kind of care described by most other online caregiver journals with which I'm familiar in which facility care for a relative is involved. Granted, I know of a few instances in which Ancient Ones receive fairly decent care: A couple of local friends and acquaintances of mine have parents in ASLs and are more than satisfied with the care their parents receive, but it should be noted that they require a very low level of care; one of my friends recently relocated to an ASL after having broken her hip and she is quite satisfied with her care, although she, too, requires a very low level of care and relocated in order to ameliorate the possibility of further tragic accidents. Still and all, the specter of the care available, through facilities, for those needing intensive care, described in the first vignette with which I opened this post, is a specter because it is so common as to be reliable.
    That's why I included the second vignette. It describes a level of intensive care that is so felicitous as to improve relationships among family members. If you read the essay, though, you'll note that it was no small feat for the wife of the man with MS to find such a facility. In some places you cannot find such a facility. Prescott is one of those places.
    One of the delightful aspects of Kessler's book is that she focused on a few residents with whom she became intimately familiar, not only in regard to caring for them but went steps further by seeking out family members (mostly on her own, unpaid, time) and learning the details of their lives in an effort to understand who those people were at the time she cared for them. The detail of the lives of her fellow Resident Assistants, though, makes it clear that it is impossible to expect this level of interest from employees who aren't writing a book about their experiences as an RA. Although Kessler asserts that being "in the moment" is a requirement of caring for those in what is called, in the book, an "Alzheimer's" facility, the truth is that it is impossible, considering the extraordinary requirements of the job, to be anything but in the moment. I can attest, from my experience, that "in the moment" care is more complimentary to the care recipient if you're familiar with the care recipient's background. The requirements of the direct care jobs in care facilities make this impossible. Curiously, one administrative staff member, the person in charge of activities, "quit to take full-time care of her stepfather, who was...diagnosed with Alzheimer's." Interesting that someone who worked, enthusiastically, in a "good" facility for people with her father's condition would decide against facility care for her father.
    It is not that most people employed at these facilities don't work hard at their jobs, assuming they are not on the "noc" shifts. Most do. However, the conditions under which all employees work guarantee that almost none of them will remain in those positions for very long, due to professional "caregiver burnout", including administrative employees. It is next to impossible, and fraught with intense psychological fall out if not impossible, for a relative taking care of another relative to quit due to caregiver burnout. It is expected that a professional caregiver will quit, though; quitting is probably a nefariously supported expectation of the corporation financing the facility, as it keeps overhead low.
    It's hard for me to imagine that high staff turnover isn't responsible for some of the confusion experienced by clients in such facilities. We like to think that people who are experiencing dementia are immune to external confusion, considering how internally confused they seem to be. Is it possible, though, that people experiencing dementia are liable to become even more confused when confronted with constantly changing caregivers, thus, constantly changing types and levels of care and a constantly changing sense of who their "family" is? Kessler mentions that confusion is also enhanced when family members react to the person experiencing dementia as though they are befuddled by and losing that person. Is it possible that one of the reasons my mother's dementia stabilized is that she did not experience the confusion of constantly changing caregivers, she did not experience the confusion of having to adjust to a different home that contained none of her family, nor did she experience the confusion of a caregiver who felt as though she was retreating?
    If you are an intense needs caregiver who knows you can no longer take care of someone in your home or theirs, this book can surely help you in determining the appropriateness of various available facilities, as it gives an unstinting view of the good and bad sides of facility care at its best. Its sentimentality will give you hope that your loved one has a chance of lucking into care that is at least as competent as the care described here and, frankly, the care described in this book, on a realistic scale of what currently exists, is pretty high. And, yet, read the last, plaintive paragraph of this recent post written by yet another online journalist caregiver whose mother is in what the journalist considers to be a fairly competent facility. I think that, deep inside, despite what we are compelled to do for and with our care-needy loved ones, all of us who ever were caregivers, who ever will be caregivers, wish for this...and know it is not available...that we're stuck, and so are our loved ones who need high level care.
    Despite this, despite the dangers inherent to caregivers and care recipients in our present caregiving conundrum in this country, I can't help a short meditation on the astonishing fact that my mother's generation, which encompasses all the care recipients written about in Kessler's book, presents itself as evidence that life is tenacious and, often, triumphant under the worst of circumstances. It is this generation that raised the general population's life expectancy (although there is ample evidence that my generation is and will continue to lower life expectancy for a variety of reasons not having, yet, to do with facility care), even though many of my mother's compatriots are relegated to live-in facility care, most of them in facilities far below the level of competence described by Kessler.
    My mother's maternal grandfather was an orphan. His mother died when he was born in New York City in the middle of the 19th century, leaving behind three boys and a widower. Soon after she died my great great grandfather remarried. A few years later he died. Soon after my great great grandfather's death, my great grandfather's stepmother turned the three boys onto the street. This was one tactic among a group of strategies developed that led to the common occurrence of child abandonment that plagued the U.S.A. from the late 18th century through the early 20th century. It appears that these boys escaped two other tactics for handling orphans: Being consigned to orphanages, which were little more than inadequate warehouses for children; and being forced into gangs or sweat shops. At least two of the boys managed to find their way to the Midwest (we're not sure if they participated in the Orphan Train) and were apprenticed to farming families. My great grandfather was especially lucky with his assignment. He was treated more like a family member than an apprentice. As such, he became educated beyond high school and was trained as a minister in college. The three boys, though, were so separated from one another that each of them had a different memory of their last name, thus making it almost impossible for genealogists in the family to track ancestors beyond these boys' natural parents. Because our information is mostly anecdotal, we are still not sure if we've identified their father correctly.
    Child abandonment, being kidnapped into sweatshop labor and consignment to orphanages and "apprenticeships" were as common, at the time my great grandfather was a child, as elder abandonment and consignment to ASLs and nursing homes are, today. It was so common during my grandfather's childhood that the condition was rarely referred to as "abandonment", except by social workers concerned about the situation. It was so common that children didn't think of themselves as "abandoned" and worked hard without a backward glance, if they lived through the experience, to continue their lives in one of the established ways to deal with the situation. Although my great grandfather and his brothers are often referred to as "orphans" they are never spoken about as "unlucky" or as having endured particularly hard lives.
    I couldn't help being reminded of these three boys and what we would now call their "plight" as I read Dancing with Rose. Although it took at least a century, our society (and some others, although not all) finally decided that childhoods such as those endured by my ancestors were untenable and began the distressing work of attempting to change the circumstances and attitudes that allowed child abandonment to seem nothing more than normal. Nowadays, we consider child abandonment perverse. Often, those who abandon children, for whatever reason, are punished for doing so. If the environment that rejected a child is considered egregious, concerted efforts are made to place the child in a better, healthier environment. These efforts aren't always successful but they no longer include orphanages of the type common during the period in which my great grandfather was a child. When the efforts aren't successful, eyes remain trained on and hands remain busy with the lives and fates of those children whose circumstances haven't been adequately addressed. Although children still fall through the cracks, this happens to only a small fraction of the number who disappeared during the late 18th through the early 20th centuries.
    Makes me wonder, what can we expect of our species if we pay attention to our elderly and infirm as people who are not dying but living, as people who deserve appropriate-to-their-age-and-condition intellectual, emotional, medical and communal inclusion rather than exclusion, if we consider that, dare I say it, we have not been loving our elderly adequately, we need to learn to love our Ancient and/or Infirm Ones as they are and not as we wish they were, not as we hope we won't someday be?
    One thing we can expect, there will no longer be a market for ambivalent exposes such as Kessler's Dancing with Rose.
- posted by Gail Rae @ 11:58   email  this post