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.
"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.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.
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.
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 granddaughter, who was in school, lied to the grandmother about what course of study she was pursuing and, as well, lied about being engaged (she was not but she allowed her grandmother to believe she was not only engaged but to a "proper" mate), had received a variety of fairly expensive gifts from her grandmother and had solicited a large sum of money from her grandmother under false pretenses.
- The granddaughter was the only relative willing to take care of, let alone visit, the grandmother, even though there were two others, an aunt and her own mother, who could have pitched in or taken over.
- A few people admitted that the grandmother could be "difficult".
- Although the granddaughter stood to inherit the grandmother's apartment by reason of her "engagement", the grandmother left the bulk of her estate to charity, of which all relatives were aware.
- It was clear that the granddaughter was not lying about the obvious mutual affection between her and her grandmother. It is also clear that, being an overburdened caregiver, most, if not all, of her "abuse" and "neglect" of her grandmother was a result of her confusion and exhaustion in the role of caregiver.
- In support of the granddaughter's contention that her grandmother sometimes pleaded to be allowed to die (she was not on Hospice, which would have allowed this to occur), the grandmother's parish priest came forth with anecdotal evidence that she consulted him about the possibility of suicide. The priest informed her that "God considers despair an insult" and told her that under no circumstances would suicide be all right, even at that stage in her life.
- Because all of these issues emerge after the grandmother's death, evidence is further tainted by hearsay to the point that the DAs agree that no one will ever know exactly what the grandmother wanted.
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.
All material, except that not written by me, copyright at time of posting by Gail Rae Hudson