Entering Strange New Territory
For years, I've heard friends talking about dealing with a relative's dementia. It sounded awful. My friend Carrie Knowles even wrote a book about it: The Last Childhood, which opens with one of the stronger first sentences ever: "Last night I dreamed my mother knew my name."
But no matter how familiar the subject, one's first face-to-face times with a relative whose mind is disappearing are profoundly disturbing. Lately I've been involved in what's to happen with one of my aunts. Where she will live. How much freedom she will or won't have.
It hasn't gone smoothly. My once tasteful and understated aunt is aggressive. That's an understatement in itself. I'll spare you details.
The idea of lobbying to limit someone's freedom is appalling to me. But I did this recently, into a microphone, for the record, before a Clerk of Court and will do it again in a couple of weeks.
To lock someone up! It's unimaginable to me — and yet seemingly necessary. I know of no alternative. I wish I did. On her own, she gets lost, doesn't know where home is; she's in danger.
But I like to be on the side of freedom. Always. And that just can't be.
And then there's the maze of the dementia itself: I try to talk with her in a logical way. Which is absurd and maddening. It's like talking loud and enunciating to someone who speaks another language. A couple of weeks ago I let myself get sucked into a crazed argument with her. She kept saying she couldn't hear. So I talked louder and louder until I realized I was shouting my pitiful logic at her in a public area of an assisted living center.
I am also unused to any sort of bureaucracy, having been self-employed for the last 41 years. And this business has involved a bunch of multi-layered systems to negotiate.
I have made one happy discovery. The court does not easily take someone's freedom. That's as it should be, and I find it reassuring.
But mostly, the conflict I feel between what I value and what I'm convinced must be done is exhausting. And it's unlikely to have an ideal ending.
Categories: enhancing creativity
Tags: Carrie Knowles, Peggy Payne, The Last Childhood
Comments
I watched my parents go through this years ago. Indeed, a sticky place. I hope it resolves well for all involved.
I’m continually relieved that it’s not my parents, Kelley. That sounds excruciating.
Sorry to hear this. I had a similar situation with my mother, and although my dad was taking care of her, it was about to put him in the grave. Trying to talk sense to one who has dementia is a total loss for everyone concerned.
I need to remind myself continuously that insisting on logic or facts or promises is pointless. It’s a hard impulse to resist. But if I say to her, “But you said…,” her fallback answer is “That’s all in the past.” She has her own cagey logic.
I’m sorry about what you and your parents went through.
Mercifully after maybe a year (or, in hindsight, a few) in 1988 my father died in July at age 72 (less than four years older than my present age). At least a year he was no longer able to speak (aphasic). He had the grace to die just before my mission trip of one month to Kenya (East Africa).
Very sad. And I’m glad you still got to go to Kenya. Probably a very good thing for you at that point.
a memoir Marion Roach Smith wrote – I intend to read it but have not yet done so – in her case, her own mother
Okay, now I understand, Bob. The title was a clue and compelling.
I can't imagine what this is like but I hope you have other family members also helping share the experience/responsibility. The fact is, she could endanger herself, or others if in a car for example. In any case, I imagine it's not easy, so hang in there.
Yes, freedom isn’t a realistic option at this point, Mohana (mohadoha!) And I’m not by any means the most devoted helper. I’m pretty new to the process and therefore freshly shocked. My brother Franc has been steadfast on this business for a long time.
Dear Peggy,
Your aunt and your family are lucky to have in you a such a thoughtful, caring and conscientious advocate. The pervasiveness of dementia is one of the devastating downsides of our extended life spans, and one of the cruelest. Your post and your contribution to the community of support and discussion around this disease is a blessing and a light.
Thank you, Frances
You’re very kind, Frances, as always. The growing pervasiveness of dementia is, yes, devastating. My husband commented recently that we seem to be outliving our brains. I’m so happy that it hasn’t hit my mom, who is 92 and still so sharp.
Very sorry to hear of your struggles and your aunt's. Such a sad thing. (((hugs)))
Thanks, Beth!