The Mom & Me Journals dot Net
The definitive, eccentric journal of an unlikely caregiver, continued.

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.

7 minute Audio Introduction to The Mom & Me Journals [a bit dated, at the moment]

Saturday, January 31, 2009
Here's the fundamental conversation I imagine (several times a day)...
...between my parents at the Elsewhere Bar or some other equally amiable spot in Above and Beyond Other Land:

Dad:  I don't know, Chick Chick (my father's nickname for my mother). That Dealie (my father's nickname for me), she's dragging her feet about getting that Death Business done. Look at her...going through that damned website of hers, editing that friend's novel, she's not getting paid for that. Crying all over the place, staying home, watching that cop show instead of doing business...
Mom:  She's not crying all over the place. Anyway, you're a fine one to talk. She got that from you. And, I seem to remember...what was the name of that fellow you used to watch? Cannon? I also remember...
Dad:  That's enough Chick Chick. We're not talking about me. I'm just saying...
Mom:  She'll be fine. She's got a lot to deal with. It's not unusual for her to take things down to the wire. She always comes through.
Dad:  I hope you're right but, I don't know, Chick Chick. You always say everything'll be all right. It's not always all right.
Mom:  It's all been all right. Isn't everything all right now?
Dad:  Everything's always all right, here. She's not here. We're not there. We can't help out.
Mom:  I couldn't help out for several years while she and I lived together. She did fine. You know she did fine.
Dad:  I know. I told her, right after you showed up, that she did fine.
Mom:  I don't think she believes that was you, you know how she is, but, regardless of what she believes, you were right.
Dad:  You weren't always right, though, there.
Mom:  That's what you think. Haven't you figured out, yet, that things always work out for the best?
Dad:  That's not the point. She's taking waaaay too much time grieving your death. That's a problem.
Mom:  She's not just grieving my death, she's finally grieving yours. She's grieving the death of her life with me. She can't see into the future. She doesn't know, yet. That's a lot to deal with, a lot to grieve.
Dad:  Nobody was ever hit harder by their mother's death than I was. But I didn't stop midstream. I couldn't.
Mom:  Well, maybe you should have. You might have lived a longer life than your mother did if you had.
Dad:  [chuckles] Well, you might have a point, Chick Chick. Cain't say I wanted to die, that was frightening, even though, lots of times, I wished I was already dead. But, it's okay now. Since I got here, though, I haven't been sorry I left there.
Mom:  Well, no, I'm not surprised. I like it here, too, but I still wish I was there. Here is always here. There isn't always there. I'd like another run at it.
Dad:  Not me, Chick Chick. You might get your wish, though, and if you do, I hope I get mine. I don't want to go back. It's hell, there, hell on Earth. [snickers at his joke]
Mom:  That's what's got you worried. You're worried that the Dad part of Gail is going to win over the Mom part of Gail. And, you're not taking into account the Gail part of Gail.
Dad:  Now, Chick Chick, you just said something, there. She was good about following her Chick Chick part while the two of you were together.
Mom:  She's always been good about following her Chick Chick part. Look at all the chances she took. Look at the chances she takes.
Dad:  You got me there, Chick Chick. Her whole life has been one big, excuse my, weeeellll, one big chance.
Mom:  That's what life there is.
Dad:  But, did we ever know, really know, what the Gail part of Gail was? She might be even better at following her Dad part, now that you're gone.
Mom:  I'm gone, but not forgotten.
Dad:  She hasn't forgotten me, either. How about a little bet, Chick Chick?
Mom:  Okay. I'll bet a million.
Dad:  A million what?
Mom:  Whatever you want. I'll raise you to two million.
Dad:  You're awfully sure of yourself.
Mom:  Aren't you?
Dad:  Okay, I'm bettin' my side, but I hope I lose.
Mom:  You will. You always do.
Dad:  Aw, come on, Chick Chick! I've won a few.
Mom:  Even when you win, you lose. That's what you always thought when you were there. You know what they say, "Thinking makes it so." I know you understand that, now.
Dad:  Well, you might have a point.
Mom:  Gail thinks she'll be all right, no matter what happens. So she will be.
Dad:  Damn, Chick Chick! I'll bet you three million.
Mom:  Three million what?
Dad:  Whatever you're bettin'.

    In their Background Here and Now I'm chanting: "I'm trying, guys. I'm doing the best I can. I know it doesn't look good, I know it looks like everyone is adjusting better than me, sometimes even I think it doesn't look good, but I'm working on it. I have high hopes. I hope, whomever wins the bet, neither of you is disappointed."
    In my Background There and Then they're saying: "Don't worry, our children have never disappointed us, no matter what. You know this. Do what you have to do. Don't mind our bet. Whatever happens, we all win, after The End.

    And so it goes. The Superbowl is tomorrow. Early tomorrow morning, while I'm supposed to be asleep (maybe I will be asleep, who knows) I'm recording the AKC Eukanuba Dog Show to watch during The [Other] Big Game. Watching it might be touch and go for me. The various dog shows were Mom-and-me favorites. But, I'm ready. I started surfing for dog shows a few weeks ago. For my pre-game show I'll be watching a recording of the Newfoundland segment of Breed All About It, my favorite dog; I'll probably watch it several times. I'll probably also spend some time daydreaming about moving to Newfoundland...perfect place to live with a Newfie. That's how all but two of my moves have started...with daydreams. With any luck, this time next year, or the year after...
Thursday, January 29, 2009
Today I sent out the first of Mom's death certificates.
    It wasn't until the shock of the act hit me that I realized by avoiding death business I'd been avoiding the finality of Mom's death. Surprising how powerful are the symbols of death.
    Today is also my father's birthday. I find myself blearily imagining the two of them celebrating at Patty's Elsewhere Bar. A foamy Brandy Alexander, one of my mother's two favorite after dinner cordials (the other being Creme de Menthe), sits before her, assembled in a decorative, fluted glass. The bartender is an eternal expert; this drink matches the extravagence of the Brandy Alexanders prepared at the Top o' the Mar: The cream has been whipped; the liqueur is dribbling through the cream. A maraschino cherry decorates the top. Not at all like the quotidian concoction two of my sisters and I received a few weeks ago after having instructed the second of two clueless bartenders on what the drink contained.
    What is my father having? I'm not sure. As a kid on Guam I didn't notice what he drank until he devolved to mixing what he called "rock gut" with milk, equal parts, in tall water glasses at home; I only noticed the fancy bottles I used to collect. With any luck, he's drinking for enjoyment, now, rather than anesthesia.
    I'm sure they're celebrating, as Mom and I took note of his birthday every year and sometimes celebrated it. It was impossible not to. He always got such a kick out of his birthday, so much so that he used to crow that the 29th of every month was his birthday; reminding us that, every four years, February was included. Mom would fix him a fresh orange and coconut cake, the pieces swimming with juicy orange sections. I wonder what they'll order in the dining room of the Elsewhere Bar. Wish I was there.
    I wonder, too, how I'll react to Mom's birthday this year. I won't be able to help noticing it...she was a birthday whore, as well. I come by it naturally. I hope, by that time, if I shed tears, they will be tears of joy that I knew her, that I loved her, that she gave birth to me; not these damned watery fits of grief.
    Salute your lives here, Mom & Dad. If you hadn't lived, your descendants wouldn't have, either.
Wednesday, January 28, 2009
"I trust her with my life."
    This statement was made by my mother the day after she was reassigned to Hospice and The Hospice Cadre visited to gather our signatures on a variety of forms. It was her response to the question, asked by our Hospice Social Worker, "Do you trust her?" meaning, of course, me. Although I suspected that my mother would answer in the affirmative with a simple "Yes", I remember being as curious to know her response as was our Social Worker because, you know, people's minds change. I was especially curious, though, since the question was asked during a rigorous discussion of Hospice's Prehospital Medical Care Directive [a.k.a. Advance Directive; DNR]. Mom hesitated signing the directive. She wasn't sure that she wouldn't want to be revived if she went into cardiac or respiratory arrest. Without the DNR Hospice can't kick in. I didn't blame Mom, nor did I dismiss her concern, so I entered into an agreement with her, in full view of and with the assumed approval of the Hospice Cadre. I told her that if she went into cardiac or respiratory arrest and I felt that she could be revived back to a state she wouldn't mind I'd call the paramedics first, before calling Hospice, hide the orange directive and let Hospice immediately know that as of that time we were signing her off Hospice. Mom liked this resolution and verbally agreed to sign the DNR. That's when our Hospice Social Worker asked The Question that elicited the response which is the title of this post.
    In essence, of course, my mother was also saying, "I trust her with my death." Awe-full responsibility, which I never took lightly, but with which I was also very comfortable after our years of intimate companionship. I'd already successfully fought all kinds of monsters on her behalf, including impending death (which sometimes involved fighting Mom, especially when she didn't feel that what was happening during any particular crisis might lead to her death).
    I was reminded of the above incident a few days ago. While ensconced in one of my still frequent Law & Order cocoons I chanced across an episode entitled Golden Years that piqued my interest beyond the simple and much appreciated distraction the series seems to be providing for me right now. The synopsis of the episode should clue you into why this episode particularly intrigued me. However, it wasn't until I encountered the following bit of dialogue that I decided to retain it on the DVR in order to review it for further thought. This conversation takes place mid-episode once the DA's office realizes that the granddaughter of the woman who died may be implicated in the death of the victim:
DA Schiff:  Penal Law 260.25--"It's only illegal to neglect an old person if the victim's incompetent because of mental disease or defect." Curiosity of the law.
ADA Hennesey:  We argue hunger and thirst affected Mrs. Bauer's mind before she died.
DA Schiff:  It's only a misdemeanor--greater curiosity of the law.
EADA Stone:  Murder by starvation. I think that's enough to move a jury.
DA Schiff:  Be sure you get one with gray hair. The young get impatient with old people, especially cantankerous ones.
    I noted immediately that the episode originally aired 15 years ago on 1/5/1994. Knowing that elder law is a minefield and will no doubt continue to be so for at least a few more decades, I wondered if there had been any refinement in the law since then and, further, what Arizona Law has to say about elder abuse and neglect.
    Definitions of terms and offenses vary widely from state to state, I discovered. In some states, like Arizona, there are few defined terms applying to elder care, thus a much wider latitude for interpretation. Many states define "Caregiver/Caretaker", sometimes going so far as to apply the definition to anyone the care recipient "trusts". Arizona is one that doesn't, and, as well, doesn't limit its definitions of "Abuse" and "Neglect" to commission by a "Caregiver". Alaska has a peculiar sub-definition of "Neglect" which includes "Self-Neglect" by the "Vulnerable Adult" to her or himself. I'm not sure why or how this would be prosecuted, although perhaps it is useful in determining assignment to necessary levels of care through Alaska's agency in charge of adult protective services. In other states, like Minnesota, such terms as "Neglect", "Abuse" and "Vulnerable Adult" are broken into several well delineated categories. Most states separately define "Financial Abuse" and "Sexual Abuse". Some go to great lengths to define those. Some do not. Lots of states make specific distinctions between professional and avocational caregivers. Some have separate codes to cover professional caregivers. Following the maxim that laws don't exist until offenses are perceived, it might appear that the states with more detailed definitions of terms and abuses are those who host more elder abuse and neglect within their populations. However, considering that Arizona has a large elderly, dependent population and one of the shorter write-ups, this maxim probably doesn't hold. It would be hard to say, though, that a less well defined code allows for more "legal" abuse and neglect. In fact, it probably gives a wider latitude for interpretation either way, especially in jury trials.
    New York Penal Code 260.25 reads pretty much the same as it did in 1994 when Golden Years first aired. It was most recently updated in 1998, so that's no surprise. The episode remains of interest 11 years later, though. During the investigative phase of the story, the police department first focuses on the live-in caregiver hired by the granddaughter to long-spot her until it is discovered that the granddaughter fired the caregiver a week or so prior to the grandmother's death from starvation and dehydration for not following the granddaughter's feeding and drinking directives, which were extremely sparse, and feeding the woman more than than "prescribed". The granddaughter claimed that the directives were ordered by a physician. Turns out, though, for several months after the directives were issued up until the time of her death the grandmother refused to return to the doctor for follow-up visits and refused, as well, to be taken to a different doctor. Thus, it was speculated that, upon further review, the directives might have been removed much earlier, preventing death by starvation/dehydration.
    In the meantime, the granddaughter's confusion over what to do and what not to do in regard to caring for her grandmother heightened as her grandmother's health deteriorated. Sometimes, she admits, her grandmother pleaded with her to allow her to die. At others...well, the granddaughter never explained what her grandmother said during these "other" times but it is suggested that there may have been days when the grandmother preferred the idea of continuing to live, despite her many maladies (similar to my mother's except for cancer, from which the grandmother was not suffering) and her pain, which at times was, apparently, unbearable.
    A variety of legal "sidebars" are introduced, as well, complicating the situation further:    The resolution of the episode was that, before jury deliberation, at a point when both the prosecution and defense felt sure that the jury was leaning toward convicting the granddaughter of a version of manslaughter, a plea bargain was agreed to in which the granddaughter was sentenced to two years for misdemeanor depraved indifference, rather than risk the possibility of a 25 year sentence for manslaughter due to depraved indifference. At any rate, the executive assistant defense attorney scolded the caregiver for, at the very least, not taking her grandmother to the hospital, despite the hearsay evidence of the grandmother's protests on this issue.
    Very complicated. Not, however, any more complicated than most in-home caregiving situations involving the elderly and/or infirm in the late stage of life. Caregiving is a tricky business. There were times, especially in regard to hydration issues, when I was concerned that I could be cited by the state for neglect in my handling of my mother's care. Although Hospice assignment allows a caregiver much more latitude in regard to actions (or, usually, non-actions) that would be considered, under non-Hospice circumstances, abusive and neglectful, this does not lift the emotional burden from the caregiver in the final hours of a care recipient's life. In my mother's case, there was a moment during her final hours when she let me know that something was not right in a way that things had never previously been "not right". I was lucky in that we were able to communicate, so I could ask her if she wanted a nurse to come out and check her over. She refused this. Still, though, up until the moment she died I continued to wonder if I should have a nurse come out, anyway, at that time, rather than waiting until the scheduled visit at 0800 that morning. The Hospice nurse on call and I also discussed the possibility of her coming out prior to 0800; my mother, at those times, preferred that she not come out. My confusion, though, did not abate until my mother actually died, primarily because I knew that she was not working at dying, she was working, against the odds, to continue living and I also knew she was probably not appreciative of my "So long, fair well" discussion earlier that evening, since she didn't think that night would be her last.
    Between the two of us, though, I can say without reservation that, despite her discomfort during her last night, she received the care she wanted and needed, it was of the highest quality, she received no care that she didn't want except the last time I changed her underwear and, through not only her last night as a human being but throughout our entire companionship she trusted me with her death. I do not believe her trust was misplaced. It's very tricky, though, being the caregiver attending not only to someone's life but to their death. I'm sure there are millions of caregivers throughout the world who replay pre-death hours and minutes over and over in their minds, wondering if they did the right thing, wondering if their relative could have and might have preferred to hang on a bit longer. Although I'm not one to necessarily vote in favor of more and more law, I find myself wondering, now, if it wouldn't hurt our society to consider the in-home, family caregiver more carefully in legal terms. Yes, Hospice allows some protection for the caregiver, but many people who are obviously living out their last days are not on Hospice, sometimes because they don't want to be, sometimes because their caregivers don't want them to be and sometimes because no one's considered it. The above mentioned episode of Law & Order suggests that the law doesn't yet protect caregivers from paying for deaths that, in the extreme, multifaceted confusion of end-of-life states, probably weren't preventable.
Monday, January 26, 2009
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.
Sunday, January 25, 2009
MFS alerted me to an interview with...
...David Rieff, son of Susan Sontag, in which Mr. Rieff talks about [the interview will not immediately appear when you click; you have to click through a "pass" page], among other subjects, his book Swimming in a Sea of Death, a memoir of his mother's death.
    I don't know whether I'll read this book, although it fascinates me. I have so many others queued for reading or, having been read, queued for reviewing. This book will definitely remain in queue, though, primarily because of the critique, discussed in the above interview and review, of the phrase "a good death". I'm sure that my mother would say she had "a good life", but not sure she'd say she experienced "a good death", seeing as how I sense that she didn't think she was dying. Thus, I'm titillated, as well, by Sontag's insistence on fighting to live and insisting that those who accompanied her on what was her death journey lie to her about the trajectory of that journey.
    As you may know, as I accompanied my mother through her death I posed myself in serious argument with the idea that any death could be "peaceful", although I was able to say that, unlike the view propounded in the two Final books, Mom was not working hard at dying, she was working hard at living, even as she took her last breath; a circumstance which surprised me but which fit with her character and which I celebrate. After reading the above mentioned articles, though, I'm feeling freshly sad (not angst-ridden, mind you, or guilty, just sad, and only moderately so; after all, what can we do about the past once we're in the future) that I prefigured my mother's death a few hours before it happened and adapted my conversation and my presence to what I suspected was happening, including suggesting to her an optimum time to die. Frankly, I don't think I made any dent in her schedule or her direction. If my mother had had it in her to live through the crisis in which she died, she would have. I know her well enough to know this. In this one way, though, I think, I did not align myself with my mother's wishes: I think, along with Sontag, she would have wished that I ignore whatever I thought to be the obvious, honor her work to live and encourage her as though her work would be successful. Not much I can do about that, now. But, as I wrote my sister this morning after having read the interview, I admitted: "Makes me wonder if I was really the 'best' support for Mom as she was dying and refusing to acknowledge that she was dying. Ah, well, I suppose I'll never know...or, if I do find out, it won't be until after I die and Mom greets me and says, 'What the fuck were you thinking, telling me good-bye when I wasn't ready!?!'"
    The next time I encounter someone I think is dying but I also notice considers him or herself in a fight to live, despite the opinion voiced in the last sentence of the book review above, I'll remember and support what that person thinks they're doing, not what I think they're doing. Why? Because, well, I wish I had not sounded, to my mother, as though I was jumping to conclusions about the character of her last human night even though it turned out I was right. It seems right-er to honor people and their experiences as they are and as they understand them, especially when their lives are at their most vivid, which they surely are just before they die, assuming they have an inkling that they are raging against the dying of the light.

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