Lately, life has been a lot.
When I was in my teens, the term “sandwich generation” was first coined, used for adults (usually women) caring for both children and aging parents at the same time. I always felt I’d escaped this, somewhat; at the time when most of my peers had small kids, my parents were still healthy. Even when The Kid was born, they seemed steady and constant, like they’d never decline.
One thing I’ve realized is we all seem like this at points in our lives. My parents were active and healthy well into their mid-70s. When things hit, they hit fast, and all at once. That they both became ill at the same time with the same diagnosis is a little unusual, but abrupt decline really isn’t. Which isn’t to say we should have been prepared for this. There’s no way to prepare for this.
My mother is struggling, and that’s not going to get better. There’s very little I can do for her. I fill out forms, I advocate for specific types of care, I make sure her cat is looked after. Thanks to some good decisions on their part and a huge amount of luck, she’s able to stay in a good facility, looked after by people with more patience than I can comprehend. My purpose, at this point, is to keep her in the least turbulent lane of the current she’s riding.
Dementia is a terminal disease. Pretty sure I didn’t parse that, at least not viscerally, when they were first diagnosed. After all, senior fuzziness is so common; isn’t it dementia when you start forgetting where you left your car keys, ha ha? But it’s a brutal, inexorable disease, stripping the brain down to nothing but raw emotion. My father never lost his sense of humor. My mother seems to be losing everything but the knowledge that she should understand the world around her, but absolutely does not. She’s angry and frustrated and frightened.
And I can’t fix it. Nobody can fix it. The best we can all do is try to keep her, as much as possible, in situations that don’t make her angry and frustrated and frightened. That’s not so easy when she can’t explain what’s triggering her.
She’s entering palliative care, which is a huge relief, as pretty much any medical procedure has become harrowing for her. She’s safe, and looked after, and her cat is still alive, which is a small miracle for which I’m daily grateful.
On the other end of it…when I shipped my chronically ill kid off to college, I knew I was going to have trouble coping. Somewhere in the whole journey with epilepsy, I became hypervigilant, lying awake at night listening for a seizure. Logic was not part of this calculus. Having her off at school where I can’t listen? It’s been hard. I’ve adapted, but not entirely in good ways. And she’s getting older, and one of these years this will stop being the place she considers home, and I can’t stop that either.
I feel a bit like I’m being stretched from both directions, and at any second I’ll be torn to pieces.
Being creative is a bitch at times like this.
Of course, having an imagination is sometimes the only way we get through. A lot of what I was writing a few years back was aimed at my parents; “Overlay” was for my dad, and “Birthdays at the End of Time” was for them both. Both of those stories, I’ve come to realize, respresent soft-edged, fantastical versions of dementia. They’re about dementia in the best possible light, before things really start going bad.
There’s this scene toward the end of Cameron’s Titanic, when one of the rich guys (I think it was Astor?) is in his fancy chair in the dining room, where he’d situated himself so he could drown with dignity, and he’s watching the water get closer and closer, his eyes growing wide. Dementia’s kind of like that: for some patients, the civilized veneer can last quite a while. But in the end, you’re going to drown, and it’s ugly, and there will be no dignity, and there’s no way to dress that up.
We’re all going to drown eventually. We don’t get to read the end of the story. We get cut off in the middle, no matter when it happens, and it feels unfair but it just is.
I write, in fits and starts. I’ve written the end of Book 5, the last planned Central Corps book, while I’m still trying to finish Book 4. I’ve worked a little on my standalone, and even commissioned a cover for it. I’ve got about a third of that one in useable condition, enough to make me want to get Book 4 done so I can finish it up.
There are days when I can’t write at all. This week has been bad. This blog post represents all my creativity. All my characters are waiting patiently, and I can’t help them, not now.
I draw a lot. I’m not great at it, but I’ve learned to get satisfying results. No AI—I copy stock photos, erasing and redoing as often as necessary. I haven’t the imagination to make original images, but I enjoy the copying. It’s satisfying when I can make a thing look real. It’s not writing. I’m not sure it counts as creating. But it’s soothing, most of the time, and I need that so much these days.
I miss my mother so much.
I feel for you, with the dementia journey, Liz. I had a beloved aunt who went through the same thing, and it’s a brutal thing. It sounds as if you’re doing as much as anyone can in the circumstances.
I’m so sorry about your mum.
Thank you. I’m so sorry about what happened with your aunt.