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August 23, 2008


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Don Moyer

So, who is likely to pay for "large well-designed trials?" Not likely drug businesses. It will take lots of hard work -- and collective action -- to get establishment funders to attend to this.

Gail Rae Hudson

You know, Mona, this post very lightly touches on something I've strongly believed but have been so reluctant to mention that I've only vaguely addressed it in the millions upon millions of words in my journals: My belief that one of the reasons my mother's dementia is stable and remains so is because I am always here, have been since the beginning, and she knows I'll continue to be no matter how her mentality wobbles (not to mention her other physical conditions), as it surely does. Certainly, there are other factors involved: She has vascular dementia and, as of this May, it was noted by CT scan that her brain remains essentially the same as it was in 2002 when the evidence of the suspicious mini-stroke was discovered; when her mentality wobbles, I immediately look for physical reasons, these are usually discovered and I see to it that they are addressed. But, overall, it's hard for me not to notice that care philosophy seems to have a lot to do with my mother's demential stability. I can only imagine the following, but, it has occurred to me that, for instance, if there had been a variety of ever changing caregivers moving in and out of her life, even if she "remained in her own home", surely her confusion would have increased. It seems to me, as well, that if I left her alone while she was awake and aware for long periods of time the same would have happened. If I had subtly resented her condition and insisted on trying to lead her rather than follow her, I believe her dementia would have increased. If, at some point, I had opined into the future, scared the shit out of myself and decided it would be best to institutionalize her because I didn't think I had it in me to handle her future, I'm sure she would be dead and would probably have died much, much more confused than she is now.
You know, Mona, I hate to even print these things. It sounds like I am condemning scores of other caregivers, and this is not what I mean to do. I realize that non-progressive vascular dementia is different than other progressive dementias. I realize that many progressive dementias progress so quickly it is impossible for a loved one who wants desperately to be the demented person's caregiver to not suddenly find herself in an out of control situation and out of control herself. And, of course, I can only guess at how many millions of people would be living in poverty, they AND their care recipients, if lots of people chose to do caregiving the way I do it. As well, I certainly can't fault people for looking ahead to their own futures after caregiving and realizing that if they do it the way I'm doing it they are in for a future of poverty when they would be most likely unable, for a variety of reasons to reverse this. That's certainly what I'm looking at. I totally get NOT doing it the way I do it. TOTALLY. And yet...my mother, a woman who by normal caregiving and medical standards would have been drooling or dead by now, isn't. Not only this, but she remains aware enough to know, when she goes to bed for the night, that she'll be greeting another day when she awakens, and she wants to do this.
I'm not saying that I'm doing it, caregiving, "better" than most people. What I'm saying is that we, as a society, aren't, at this point, set up to allow the kind of caregiving I'm doing. My society is not even set up to allow or support me and others in this endeavor or to credit me and others so that we can go on in relative comfort when our care recipients die. No wonder only crazy people (like me) do it this way. What I suspect is that what I'm doing works, but the cost to the caregiver and the care recipient, at this time, is so great that either it cannot be done or, if it is, society decides that, if the caregiver's future after-care life is sacrificed, it is the caregiver's fault, not society's, as the caregiver could have chosen to sacrifice some of all of the care recipient's quality of life and saved herself. Damned awful decision to have to make. I'm completely in agreement with all those who refuse to make the choice I did.
And yet...as this post of yours seems to assert, if we COULD all do it this way, without the threat of a miserable future awaiting us after-caregiving, everyone would be psychologically and socially better off. Everyone.
I'm looking forward to Part 2.
Thank you for this post, Mona. I needed to read this. I needed to know that, at least in theory, I'm not the only one.

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