Caregiving Pt. 1
Sorry but this is an eldercare blog now
Welcome to Welcome to Hell!!!. This is a newsletter of sometimes deep (but mostly dumb) thoughts on life & stuff from Alison Zeidman, an Emmy-losing comedy writer.
If you enjoy that sort of thing, please consider a free subscription to support my dumb bullshit and receive these in your inbox.
First of all: Happy Day After Halloween! I’ve been quiet lately because I’ve been overwhelmed dealing with something far scarier and more evil than anything Michael Myers could even imagine: the for-profit eldercare industry. OoOoOoh! Spooky!
So, that’s what inspired today’s post. I promise I’ll do something more fun like a big ol’ Not My Kid(s) Of the Week Last Month+ round-up soon, but if you scroll past all the depressing crap read to the end, you’ll be rewarded with a picture of Peggy in her Halloween costume.
OK, that’s the disclaimer. Now let’s get into it.
The number one reason I don’t have children is that I don’t want to be a parent, but the number two reason is that in some ways I already am: My mom has early-onset Alzheimer’s, so I’ve been doing the whole parent-child role reversal thing for a while now, since well before anyone else my age was even considering having kids.
I don’t take care of my mom full-time, or alone, but that still doesn’t make it easy. And it’s been especially a struggle over the last month and a half, because systems and services theoretically in place to make these things easier are operating exactly as designed: terribly.
Very long story short, Mom was recently transferred out of memory care in assisted living for a temporary stay in a behavioral management unit at nursing facility. (Was that really necessary? Depends on who you ask. Do I have more to say about it? Definitely.)Despite our fears about how she’d adjust to a strange new environment, she actually settled in pretty easily, and there have been zero behavioral incidents in the two weeks since she’s been there. It doesn’t look as nice as assisted living, but in terms of the very low standards you have to have for these kinds of places, the staff seems great and the facility itself is pretty decent. Dated and clinical-looking, but organized and clean. Heavy on formica, but low on signs of neglect. Minimally decorated, but also minimally smelly. (Oh my god, so many of these places are smelly.)
It’s hard seeing my Mom like this, in places like this, but it’s the kind of hard that’s been going on for so long that most of the time I don’t even register it until someone else points it out. But it’s not all bad, and I want to try to focus more on the not-all-bad parts. So here are some not-all-bad moments from visits over the last week.
Tuesday, October 24
I went over around 11am and found Mom finishing up a late breakfast. She ate all her pancakes, and either someone helped her or she did an exceptionally good job of licking her fingers clean, because her hands weren’t all syrup-y. She still had two cups of orange juice, the kind of plastic cups with the foil seal that you have to either peel back and risk spilling the juice all over yourself, or punch a straw through it and risk spraying the juice all over yourself. Someone had already punched a straw through one of the cups, so I held it up to her and she sucked down the whole thing in one long, continuous go. I punched the straw through the second cup, and she drank all of that too. It felt like success.
Then I asked if she wanted to get up and take a walk, and she said yes but didn’t make any move to stand up. I stood up and asked her if she could stand up, and she said yes, but still didn’t move. So I sat back down, because really there was no need for us to stand up and take a walk right that second and I figured I’d just try again in a few minutes. For the sake of having something else to do in the meantime, I opened the knock-off Rice Krispies that were still on the breakfast tray and fed her some dry spoonfuls. I also accidentally dropped a lot of rice krispies in her lap, because steadying a plastic spoon of rice krispies and getting them into someone’s mouth is harder than it looks, and even though I’ve fed my mom tons of times I guess today I was a little off my spoon-handling game.
After she’d had enough of the generic rice crisp cereal, we did get up to take a walk, just around the building a few times.
Friday, October 27
More walking today, and also dancing. Mom still loves all the music she’s always loved, and she actually dances a lot. She has a surprisingly good sense of rhythm (maybe even better than before actually), which is nice to see. Much less surprisingly, I have a very poor sense of rhythm, but I lean into it and she laughs, and that is also nice to see. She especially responds to Michael Jackson, and that can be kind of weird to see because of everyhing we know about him now, but what am I going to do, stop her and tell her it’s problematic? (There’s your answer to “how to separate the art from the artist.” Dementia.)
Tuesday, October 31
I remembered to do a bunch of mom-related things I was supposed to do: Call to see if I could get her an earlier urologist appointment; have her current med list faxed to the case manager; and bring her nail clippers, Halloween candy, and most importantly, one of those mini facial hair razor stick thingies to shave her little side-of-the-mouth mustache hairs for her.
I’m serious. When she was first diagnosed, she said someone continuing to pluck those hairs for her was the most important thing to her in terms of how she wanted to be cared for I’ve fallen really behind on it, but I can’t actually pluck them anymore because it’s kind of impossible to explain to someone with Alzheimer’s why they should let you hurt them by pulling individual hairs out of their face.
So I thought I’d try the stick thingie and finally remembered to bring the stick thingie, and then it didn’t even work, so I guess I’ll be seeing the manufacturers of the Schick Hydro Silk Touch-Up Multipurpose Exfoliating Facial Razor and Eyebrow Shaper in court.
Another patient joined us for a walking/wandering lap around the unit, which at first was reason for caution (sometimes patients start fights), but then turned out to be pretty great. She was a “real character” as people my mom’s age and older would say; she reminded me of shit-talking South Philly neighborhood ladies, and kept calling the men assholes under her breath. My kind of lady!
She and Mom also had a “conversation",” and when that happens it’s really sweet to see. They don’t know what they’re saying or that they don’t understand each other, but they’re still having a very pleasant social interaction. Example:
Woman: Do you think it’s going to happen soon?
Mom (excited): I know!
When I got up to leave they got up too, but they didn’t follow me. They went off and did their own thing, continuing their respective sides of whatever conversation they each thought they were having.
That’s how a lot of our visits end: She forgets about me and wanders off. It’s honestly the best-case scenario — at least she’s not sad I’m leaving, or angry. So I don’t take it personally, I just watch her walk away.
OK that’s it! As promised, here’s a picture of Peggy in her Halloween costume.
I'd also like to thank you for sharing this part of your life.
Your mom is so lucky to have you to depend on.
And can I just say- I love that Peggy's sweater isn't part of her costume, but just part of her standard colorful outfit.
Thank you for sharing this part of your life. 💗