Am I a Control "Freak"?
    Emphasis on "Freak". Don't answer that yet.
    Off Topic Prologue: My intention was to awaken my mother at noon, today. It is now 1159. I've decided to wait until I've finished this post. File this one under: "Caregiver Takes Care of Self...First".
    Our regular Hospice RN, whom we greatly value and enjoy, visited yesterday. During the course of the visit many aspects of my caring of my mother were discussed, a most important one of which, my use of furosemide, is thoroughly covered at the immediately previous link. This discussion led indirectly into consideration of hydration; "indirectly" because, although intimately connected with all the aspects of furosemide use that were laid out, yesterday, the hydration issue came up because, at one point toward the end of the visit I prompted my mother to drink some more of her tea.
    Mind you, our RN had already waxed eloquent on how I need to relax and consider that the weekly Hospice visits were designed to take some of the weight of mother-observation-and-consideration off my shoulders. I had to agree, during this portion of our discussion, that, while I am relaxing, I'm not nearly as relaxed, yet, as I could be while we're nestled in the arms of Hospice. I made no excuses for this. Our RN mentioned, in summation, that it would be to my benefit to take full advantage of this because (this next is a paraphrase) "...you'll be caregiving a lot later."
    My reaction to this statement was internal: I surmised that, despite the fact that he knows I've been involved in intense needs caregiving (emphasis on "intense") with my mother for for nigh on 12 years, now, the reality of what I've been doing isn't clear to him and he has no idea how intense many of the episodes, many of those prolonged, have been. If he thinks I have no idea what "caregiving" means, and that I'm not really doing that, now, nor never have, well, he's misinformed; but, you know, whatever.
    Anyway, when I prompted my mother about drinking, the stage was set for our RN to respond, "If she wants to."
    Oops! Wrong thing to say to the likes of Caregiver Me! I started by telling him that if I had followed this if-she-wants-to directive (with which I've been scolded, before) my mother would have been dead some several years ago. I explained to him that I am in sympathy with the fact that, as people approach dying they refuse fluids and this is most likely a part of the "active dying process". However, I continued, old people often lose their sense of thirst long before they are ready to die. I talked about how it's a struggle, one I call "water torture", which I carefully delineated as torture for me, rather than my mother, to get just under two quarts (not two liters, I emphasized, which is an average recommended fluid intake for my mother) of fluid in her throughout any particular day. Some days I manage to get much less and, yes, when a day like this occurs it is often followed by a night in which she drinks from the quart cup with a straw left by her bed at night; not enough to completely hydrate herself, mind you, but enough to signal to me that, on occasion, when her body is tumbling into severe dehydration, it can sometimes be relied upon to trigger a thirst response so strong it awakens her out of her first favorite activity. Sometimes. At one point I said, "I'm very familiar with the hydration issue in regard to the elderly. I've written (meaning in my journal, about which he knows) a lot on it over the years. It's tricky. I know this."
    The nurse accessed some handy-dandy online software he has for calculating individual fluid requirements. Seems my mother's requirement is actually slightly more than two liters. So, as one doctor famously said, "She runs a bit dry" a lot, probably.
    In the meantime I also explained to him that, in regard to the hydration issue, this is the yardstick I use: As long as I am able to detect, to my satisfaction, that my mother is not in her "active dying phase", I have to operate under the assumption that while she may not want to drink, she wants to remain alive and kicking and the only way to ensure this is to apply water torture, here and there, usually on a daily basis. Although I didn't mention the following, I suspect I will be able to tell when the appropriate moment comes to honor my mother's lack of thirst by the fact that "water torture" no longer works and she refuses to swallow fluids placed in her mouth. At any rate, one way or another, I think I'll know. I don't think I'll go overboard with the "water torture" business.
    Anyway, nothing was really resolved between us. I assume he understood that I will continue to follow my current procedure, I will continue to have problems getting a decent amount of fluid into my mother, I will continue to use mild threats when necessary, such as "You can't go in for a nap until you've finished your tea," and "You can't have dessert until you've finished your coffee," (which is usually the second to the last 14 oz dose of fluids she gets before retiring), etc.
    In summary, sometimes I get the impression that we, as a society, are far too willing to maneuver our Ancient Ones into a state of dwinding and "active dying" long before they are ready. I know, for instance, that if I honored my mother's wishes in regard to fluid ingestion, within 24 hours the problems would begin (problems we've had before in various measures): Constipation; high electrolytes; extreme lethargy and weakness. All signals of end-of-life dwindling. And, yet, I also know that my mother is nowhere near, at this moment, "ready to die", or, for that matter, "actively dying", whether or not she's ready to die. If I'm unsure I ask her, as I did this last Sunday.
    I became familiar with a rather frightening "new" policy when my mother was at the rehab facility. It's considered the height of human rights. It involves not forcing a patient to do, or not do, anything, including drink fluids. And, of course, my mother was constantly dehydrated, a little to a lot, despite my attempt to get fluids into her when I was there, almost always constipated, usually much, much weaker and much less able to move than it turns out she really was once I got her home and properly hydrated (which took about 24 hours).
    It's still really tricky out there. One the one hand, I applaud the notion that elders, even demented elders, have a right to dictate, in as much as they can, how their lives should continue to unfold. On the other hand, when you know, absolutely know, that an elder is not thinking in terms of dying but also has lost their ability to feel appropriate thirst, is it humanly right, in this society, at this time, to allow someone to ignorantly dehydrate themselves to death? Or, is it simply convenient for us to do so because, you know, old age is such a damned inconvenience in our society right now?
    In answer to the question entitled above, let me answer it for you: If you consider that honoring my mother's desire to continue to have an uninterrupted, unspecified flow of decent days by making sure, sometimes with "water torture", that she remains well enough hydrated to enjoy her desire then, yes, call me a Control Freak; and leave us alone to continue to enjoy our unspecified number of days together as we have...and as we will. As long as my mother values being alive above the possibility of being dead, I'll continue to do everything I can to make sure that she is allowed to live, with panache, according to her definition of that word, including such things as supporting her when she moves so she doesn't fall into a deadly injury; seeing to it that her medications are adequate to her in order to keep her functioning at what she considers a smooth rate; seeing to it that she has the companionship she needs to feel as though life is worth rousing to; and, yes, making sure she's hydrated enough, one way or another, so that lubricated functioning is a given. All of these things go together. If we're going to abandon policing hydration, why don't we also abandon our concern about over and under medication? Safety of movement within the home? Adequate sociality to ensure a desire to remain human?
    Answer me those.
    Well over time for me to awaken my mother. She'll be thrilled with the extra hour, though. I can't lose for winning, there!
    Later.
- posted by Gail Rae @ 12:52   email  this post