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Thursday, July 30, 2009

silver lining shit

So I noticed on another blog that someone was talking about how hard it was to see an ailing grandparent who didn't recognize her any more. Here's a note I started for her but decided to post here:

I don't know if it helps to know this, but it did help me: At this point, your pain for your grandmother is way more severe or at least more of a continuous weight than hers is for herself. Both my parents went through dementia (my father's wasn't as bad as mom's) and it was horrible to watch, no doubt about it. But someone--actually several someones--pointed out that in the situation the suffering was way harder for me because I couldn't make the memory of it go away.

For instance my dad was in a wheelchair and a few times when I was visiting him, he'd ask me to "help me out of this chair." I'd have to point out to him that he couldn't stand up. And the look of horror on his face--I'll never forget it, unless of course I end up in the same condition. Point is, though I won't forget it, that horror came and went for him in a matter of a minute or two at most.

By the time my mother was going gaga, I'd usually learned to escape the horror by evasion. I couldn't pretend he could still get up and walk but I could say something like "why don't you rest here a minute or two longer." And hope he would forget he wanted to stand up.

Evasion keeps it easier. Soon after he'd died, my mother asked me where my dad was. You'd think I'd know by then to just shut up but I said without thinking, he's dead. Fresh huge grief on her face.

After that whenever she asked about him or someone else who was dead, I'd say stuff like "I'm not sure." And "I'm not sure, but I'm certain we'll know soon. I'm sure they're safe." Hey, it wasn't entirely a lie.

There's also that other part, them forgetting who you are. That's pretty horrendous. Not as bad as watching the complete loss of their personalities, but it's not a lot of fun. I think now that my own pain at that particular kind of dementia was, again, all about me. It was mourning. I got to see their loss in my life before they died and I was sorry to see that huge hole before it happened. When intact people die, the mourning is fierce and much stronger, almost frightening. When someone with dementia finally dies, it feels as if you're further along in the process--because you are. Kind of odd but I think it was the only advantage. I could function (sort of) more easily after their deaths than I could with other deaths just because it had happened by degrees.

Hey, might as well have some sort of silver lining to dementia.

At one point when I was ranting to Andrew (the BIL not son) about how hard it was to watch them slip away piece by piece he said something I'd heard before but the way he said it made me feel better. Something along the lines of dementia isn't an unnatural process if you think of them as going out the way they came in, helpless and minus the experience and the life. At least I think that's what he said.

That whole slipping out of life the way you enter it was something I'd heard before ...heck Shakespeare was on the case (in Lear? maybe?). But the entire lose of a personality in a living person had felt unnatural until he said those words. Then it felt cruel and horrible but not unnatural. Something about what constituted the soul fit into that discussion but damned if I know what it was. My memory's failing.

* * *

PS. The Alzheimer's Association. Learn to love them, use them, worship them. They are wonderful. Their reading material helps anyone who has to deal with dementia patients because ugh, the patterns are pretty much the same for most people.

Neither of my parents had real Alzheimers and only my mom (who likely had TIAs) had the nastier symptoms like sun-downing, but I still got a lot of information from them. I wasn't a primary caregiver--to be truthful, I wasn't even a frequent-enough visitor--but everything I read by them was wonderful. (I found them when I was researching an article)

6 comments:

  1. Biddy-Ola10:31 PM

    I heart you Kate.

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  2. Thanks for this post. This is really helpful insight.

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  3. That was really lovely.

    I had wanted to write something for her as well, but this was ever so much nicer.

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  4. Well spoken. It is hard to watch them fade. Harder for some siblings than for others. I've learned to nod and agree with just about anything that comes out of my mom's mouth. One of my sisters still tries to correct her sometimes. When we went to visit her this past weekend, I had to gently kick my sister in the shin to get her to drop it. Jeez, get a clue! If mom thinks she and dad went to visit the Great Pyramids on one of their many (continental US) vacations--then you agree that was cool.

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  5. Anonymous5:24 PM

    I WANTED TO COMMENT SOONER ON THIS,

    mY MOTHER had Alzheimer's and lived with us for most of her last year and a half.

    Everything you said is so true. I had learned to live with brain injury ( my darling husband) and had learned patience AND evasion are your best friends.

    There were so many organizations and people who then referred me to even more, because as you said, you go out as you came in. Not everyone. My Aunt recently died suddenly at 93 and she was sharp as a tak and took care of herself until the end. I want to be like her.

    My heart goes out to everyone dealing with any kind of memory loss.

    Kathi h

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  6. Thanks for steering me here, Kate. I appreciate it.

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