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]

Sunday, July 13, 2008
 
Hospice and the Dying Game
    Hospice, of course, operates within the purview of The Dying Game. This shouldn't come as a surprise to anyone. That's the purpose of the organization. As the Hospice Movement has grown, it has become more inclusive in its definition of what constitutes The Dying Game. This is also appropriate. My mother, for instance, is no more obviously ensconced in dying than she was previous to her lung cancer diagnosis. Hospice, however, has helped to identify a slow but steady decline toward an obvious death and embraces this definition on my mother's behalf. Although I find them interesting, I am not offended by the frequent "warnings", voiced by almost every Hospice employee with whom I've come into contact, that my mother will be evaluated on a regular basis to determine whether Hospice is appropriate to her. Resources are limited, after all, and, as many of these employees have said, "Sometimes people get better." I doubt that my mother's cancer is going to go into remission, considering that it's been around for so long and has continued to steadily grow, but I make allowances for the possibility that its growth may very well be so slow as to not require Hospice oversight during periods of time. I am, it is true, confused about how long my mother's journey toward death will take and why she seems not quite enough disabled, according to Hospice's definition, by this journey, but I expect all these confusions to sort themselves out in time. I am not confused about one aspect of Hospice, though: The party line is that Hospice is devoted to "quality of life" issues. In fact, and I do not write this as a condemnation, it is devoted to quality of death issues. I don't have a problem with this purpose. Before such organizations devoted themselves to this matter, death was not handled nearly as well and, in some cases, wasn't even allowed. Someone had to take up the slack. Thank the gods someone did.
    On July 1st we were visited by the physician who is overseeing my mother's Hospice journey. I was completely in agreement with almost everything she said. As usual, when listening I think slowly, if at all, thus I didn't respond to the following while the physician was here: Toward the end of our conversation, which included Mom, while the physician and I were discussing treatments she currently receives for her various chronic conditions, the subject of Mom's chronic anemia surfaced. I was meticulous in covering the previous blood draw schedule Mom's former PCP had established in order to keep an eye on her hemoglobin. I stressed that, at this point, if it dropped precipitously, the only recommended treatment would be a blood transfusion. I mentioned that, with luck, this won't happen, or, maybe, just once more. In the meantime, I continued, I felt that, while Mom seemed to be looking good and her energy was up, perhaps a CBC/BMP (which is necessary to keep an eye on kidney functions, which are related in a curious back and forth manner to her chronic anemia) could be put off until the end of July (the last being done on June 12, 2008, at the rehab facility).
    Although I can't exactly quote the physician, her reaction was as follows: As time goes by and my mother's decline becomes more obvious, perhaps monitoring and/or treating her chronic anemia with anything more than iron supplements could be dispensed.
    I didn't react to this immediately, I just took it in.
    As days passed and I considered what she'd said, I also wondered about alertness and its relationship to one's personal death experience. If my mother falls victim to pain, especially overwhelming pain, for instance, it would be appropriate to medicate her for this, thus also decreasing her ability to be alert in the moments before death; heavy duty pain medication might even cancel out the possibility of the legendary "moments of clarity" which we are told often immediately precede death. If she falls into a coma as a result of advancing illness, well, alertness is questionable under these circumstances. Considering these aspects of death led me to wonder, though, how much alertness Hospice would entertain as Mom moves closer toward death. For instance: Without oxygen, my mother would have been dead a long time ago, I'm sure. But, this living aid hasn't been questioned, not only because it keeps her alive but it also enhances her alertness. Treating her Type 2 Diabetes enhances her alertness, as well. So does treating her anemia. I doubt that my mother will be weaned from oxygen during her final days. To my knowledge, which may be incorrect, even if someone refuses intubation and/or breathing machines, they remain on oxygen in order to control the possibility of anxiety (which may still enter into the picture, even on oxygen therapy). If her appetite declines prior to death it would be appropriate to cut back on her glipizide, of course. This, however, is also appropriate now. Treating her anemia over the last few years has surely, as well, kept my mother alive, and more alert than she'd be without treatment. Is it possible though, I wondered, that this particular treatment would be considered inappropriate by Hospice, perhaps even considered to be standing in the way of an "enhanced" death?
    After considering these issues for some days I decided to ask my mother how alert she would like to be through her death. I was specific with the question. I included wherefores such as, "in the event of coma," "in the event of overwhelming pain from which you would want to be medicated," and "in the even of confusion and anxiety which you would want alleviated." I stressed that we have no way of knowing, at the moment, what physical condition she'll be in just previous to her death, nor what physical irregularities will be at play during this time. "Considering all these things," I said, and I could tell she was, indeed, considering them, "if you do not die in your sleep (and, I added, I question whether anyone really "dies in their sleep" or, whether, they awaken just previous to a terminal event), do you want to be alert and aware of what is happening to you in the moments previous to and during your death?"
    Her response was unequivocal. "Oh, yes," she said. "I want to be aware of what's happening, if possible. When the time comes, it'll be a new experience. Why wouldn't I want to be aware of what's going on?"
    I expected that this would be her preference. I didn't, though, expect how vociferously she would prefer alertness and awareness during death to being out of it.
    Now, I'm wondering, how far will Hospice go to honor my mother's preference for alertness and awareness at the point of death? Even if it means that she may live a few hours or days longer than she would otherwise, would Hospice allow a continuation of anemia treatment, including a transfusion or two, if this would ensure that my mother would be at her alert and aware best while she is dying? Would Hospice consider that, for my mother, an "enhanced death" would mean treating her to keep her as alert as possible so that she is able to take advantage of some sort of ability to be aware of her death experience? Has Hospice yet considered these possibilities? Will I have to fight to keep my mother as alert as she'd like through her death?
    I know, it's maddening. More questions than answers. I will, of course, as I'm able, be posing this puzzle with Hospice staff. I'll certainly report back on their responses. One such opportunity will probably be soon, since we have yet to meet the Hospice nurse who has been assigned to us. He's been on vacation.
    If you have an interest in this subject, stay tuned.
    Later.
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