Comment by Shenglong | Hacker News Reader

Comment by Shenglong | Hacker News Reader

I have a family member who has passed away from Alzheimer's, and I'd like to weigh in. When you face late-stage Alzheimer's, you (and the people around you) really have one of two mindsets, realizing that conventional, already-tested treatments aren't likely going to cure you, or ensure your survival much longer:

1. Accept your fate; live out the remainder of your life the best you can before your loss of memory tears apart the very fabric of who you are.

2. Try unproven, religious, traditional, etc treatments that the rest of us would consider ridiculous, and hope for the best.

I think a very valid argument could be made for #1, but not everyone weighs life with the same set of values. While it may not entirely be wise to seek in-testing treatments, it should be understandable why some would do so.

The problem with #1 is that it won't be me, alone, whose life will be rent asunder. (Dementia is part of my condition, and though it is currently well-controlled, I am aware of a steady, gradual decline, the emotions that flare up out of frustration, and more than a little irrational thinking. I've watched my family and friends go through this before, too many times.)

My current hope is that when I've gotten too stupid to live, I'll do something so spectacularly stupid that the problem is largely self-correcting (and, if all goes well, wins me a Darwin on the way out). There is no comfortable way to lose a loved one, but some are far more damaging than others. I hate even the thought that the people who care about me will still care about and be hurt by me even when I am no longer myself in any real sense. I might not chase obvious quackery, but anything that's an experimental coin toss might not be out of the question,say, this time next year.

#2 is a super common alternative. A colleague of mine was suffering from late-stage lupus and was told he had X years to live. Well, X+10 years later and he continues to live (though dementia continued to get worse and he became less and less able to tackle basic life tasks), so he attributes these things to the Reiki healing techniques he's applied in his life despite being a normally very scientific person.

I can't begrudge a guy like that - whatever brings him comfort as he nears the end of his life is fine with me.

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