Mom has Parkinson's dementia. It's a form of Lewy body dementia, the same thing Robin Williams had (more or less). Her brain is literally clogging with proteins & dying, bit by bit.
I don't blame Williams for ending his own life in the least. This shit is horrible. It's like living a horror story that gets worse every day.
Right now she's in a severe sundowning phase, with every single symptom: anxiety, agitation, restlessness, pacing, aggression, the works. She's currently locked up in a psych unit with a 24/7 sitter while they desperately try to find her a bed at a geropsych unit.
She's getting great care, at least; her providers and carers treat her with compassion & kindness, & seem as if they're up on the latest research & info re: her condision.
She was living at a memory care place but started attacking people, so had to leave.
Huh. Condition. Apparently I'm not spelling perfectly these days.
Easier to look at my own spelling errors than at the haggard, dying woman that is my biological mother, & the reality of her situation. Mostly I stay detached from it. It's fucking horrifying when I can't.
Mostly I'm sad, when I feel about it. Bone-deep, sorrow is my blood, kind of sad.
Nobody should die like this. Brain diseases are shit.
Saddest of all is that I've never had a good, healthy, honest relationship with my mother.
She spent most of my life drunk, inflicting her demons on the rest of her family. Some of the shit she's pulled over the years is so fucked up it's inexcusable. She is *not* a good person.
I get why: she was raised by a beautiful, charming, incredibly cruel mother - who passed the abusive legacy down from her own mother. This shit goes back to my great-grandmother, maybe even before that. Mom wasn't wanted from even before she was born, & it hollowed her out by the age of 6.
She's been a shell of a person ever since she was a child. & now she's barely even that. She keeps lashing out & the staff keep having to restrain her so she doesn't hurt herself or anyone else. She spends half the time knocked out on Ativan & the other half of the time pacing & wandering & completely confused.
& I'm in the US, so care for folks like my mom just... isn't there.
I mean, there are something like 1350 geropsychiatrists *in the entire nation*. There's one program locally & it's full. The waiting list is years for care.
We have no idea how long she'll be in limbo in the psych unit, or where she will go next. Adult homes are overflowing, memory care won't take her, dad can't afford to have a 24/7 carer... fuck, he's going to be 80 this year, *he* certainly can't take care of her.
There really is a massive care crisis in the US. It's inexcusable. & we're not the only family living with the horrors of trying to deal with all this bullshit.
Dad is truckin' along, doing what he can to manage it. I don't know how the hell he's holding up, seeing his wife of 57 years decaying in front of his eyes. He's a pretty calm, Stoic kind of guy so he doesn't emote much, but I know him well enough to know his feelings run deep.
Yeah. So. I got a lot going on.
Parkinson's sucks. Lewy body dementia sucks. It all sucks. It fucking sucks to the core.
That is all.
That is so much to have to wrestle with, I’m so sorry for all of you. I hope she’s able to find somewhere as soon as possible, ♥️ @Impious_Jade
@Armchaircouch Thanks. We're working on it, & grateful for the good care she *is* getting. Sibling & I doing all we can to support our dad, too.
@Impious_Jade I'm so sorry.
@piquant00 Thanks. <3
@Impious_Jade @piquant00 I am so sorry. End of life issues can be really hard, but the inadequacy of affordable care options in the US make them doubly stressful.
@Impious_Jade I had both parents with Alz/Dementia and Organic Brain disease at the same time. My Mom also had Normal Pressure Hydrocephalus.
It was an awful time. I k ow what you’re going through make sure you’re taking care of yourself
It can be a slippery slope.
@Impious_Jade
This is more relatable than you know. My mother died last year with severe dementia. Throughout my adulthood, I had to keep her at arm's length due to her narcissism. It took all 4 of us kids, plus spousal assistance, to manage her care. I did not weep when she passed. Yes, a crisis in eldercare. YOYO figuring it out.
@Impious_Jade I run out of meds in two days, and can't even get Medicaid to tell me why they suddenly dropped me. It will take at least a month or two to sort it out, and I need medication every day.
To fix this, I'm having to deal with multiple offices, all of which can take days or weeks or even months just to return a call.
So yeah, I can personally attest to a care crisis.
Dying Boomers are overwhelming the health care system here, along with staffing issues caused by a whole bunch of different factors (including post-pandemic issues, fewer providers due to burnout, & limits on how many new MDs can be trained each year).