Rethinking Health Care Proxies

In my experience, the folks who judge (or at least don’t seem to understand) are the ones with a 90 year old parent who is learning to ski because last year’s scuba diving lessons were so successful.

I don’t begrudge ANYONE health or long life. But I have noticed a tinge of judgement by those who haven’t actually had to manage/make decisions/take care of/PAY FOR the care of a rapidly declining loved one. After one parent’s Alzheimer’s diagnosis, I cannot count the number of friends, acquaintances, colleagues who would send me the famous nun study (apparently, nuns who did crossword puzzles were diagnosed at a lower rate than those who did not).

Nobody wanted to grapple with the reality that a champion bridge player with a photographic memory who had published several complex works of non-fiction (written in not the first, not the second, not the third-- but the FOURTH language) and had won major awards for those works-- could POSSIBLY have Alzheimer’s just because there were no crossword puzzles sitting around.

And the judgement continues through treatment (a friend actually suggested a “quick” trip to Mexico because there’s a clinic there doing great things with herbs) and the inevitable decline and decision-making. Anyone who has gone through it does the secret handshake (a tip of the head to acknowledge how hellacious it all is). Anyone with the parent who is cruising the Adriatic and blogging about it while wearing designer leisure wear doesn’t understand the quest for clothing which is machine washable, fits over incontinence products but doesn’t look bulky, and can be taken off/put on when someone is seated in a wheelchair and cannot manipulate their own limbs.

Hugs to you (and the secret head nod). You sound like exactly the person who should be making these decisions for a loved one. Kudos to you for your kindness and bravery.

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The most difficult decision I ever had to make was to say no to surgery when my brother had a stroke. It was risky surgery, one he may well not survive but if he did he likely would suffer impairment. I didn’t know what he would have wanted, so I was flying blind. My brother was very proud of being a genius, and when I was told that his cognitive function may well be compromised, I decided that he would not want to live that way. I have never second guessed my decision, but it would have been easier in the moment had he made his thoughts on end of life known.

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@1214mom I made the call to hospice before my mother’s surgery and the only reason I reversed that and said yes, was that hospice was going to need a surgical vent to the GI blockage anyway.

These decisions are soooo nuanced and there is no right answer.

I got judged by my mother’s sister for doing the surgery. Actually she raged at me.

I just lost a dear cousin to Alzheimer’s. He died early in the disease and I do hope it spared him and his family.

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OK, I’m back.

Taking care of my mom with dementia at home with my sibs was such an honor. But it was so difficult, and I can deal with giving my kids a little less honor and a lot more peace of mind by one, not insisting on being cared for at home, and two, making my wishes known to not have them do all kinds of heroic measures to keep me alive. I do feel like my mom had some quality of life until the last two weeks so maybe things worked out just as they should, but, god, it was so stressful, and I wish that on no one.

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@Youdon_tsay I am looking at CCRC’s to try to spare my kids some. I took care of my mother for 8 years but she was in assisted living so at least I could drive away. Caring for a person with dementia at home is truly “heroic.” These decisions are so complex and nuanced.

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