Out of ideas

ESkayP

My Mom has been in memory care almost a year now. It will be a year the first week of September. She was in AL at the same facility for about six weeks before they insisted she be moved to MC. She was wandering at night and anxious most of the time. Once in MC, there was a transition phase, but it didn't have anything to do with her AL apartment. She forgot it almost immediately. She still wanted me to take her "back home," though. At some point, she stopped asking about her house and understood that we had sold it. She's even accepted that she couldn't live alone anymore. She was doing really well until recently. The past month or so, she is depressed when I visit. She doesn't have enough to do to occupy her time. That's always been a problem for her. Even when she lived alone and had plenty of time to go to the library, to go shopping or out to lunch with friends, she chose to stay in. I think it has more to do with the fact that she doesn't have any responsibilities anymore. She doesn't have to keep house or run errands. She never learned to appreciate free time, so now she doesn't know what to do. I've run the gambit on suggestions for activities she could do by herself or with the residents there. The bottom line is, she wants the life she had, or at least the life she believes she had. This disease is just cruel enough to take away her ability to do for herself but not so overwhelming so far that she can't remember her former life.

I visit every weekend, and I feel so drained for anything new to talk about. She seems to want me to entertain her. The truth is I'd rather not live my week over in conversation. It wasn't that rewarding the first time around. We used to color pages or play cards when she lived alone, but she can't focus anymore. I wondered about reading to her. Has anyone had any luck with activities when you visit? I'm looking for ideas.

Lucy C

M1 mentioned recently—and it was a really informative comment, to me—that apathy and loss of executive function are features of this disease. The person stops being able to want to "do things" alone, and starts scaffolding on you, the caregiver, to provide what their "do" button won't do anymore. That's a clumsy way to explain it, but it's the closest I can come. And yes, I've experienced it. Right now, she still likes to read (thankfully), but that won't last.

You might try watching movies with her, if you can find anything that suits her taste. Or take her an audio book, to play while you're there. Maybe even take in some play-doh or modeling clay, and see if she'd like to fiddle with it. I don't know if she could focus enough to do those old stretchy hot-pad hooking kits (do you remember those?) but they were fun, and so were the old lite-brite things.

Anyway, I hope some of the folks here will have more ideas. ❤️

Edit: I just remembered: there are literally a million crafts for making Christmas ornaments—all kinds of kits out there, including the fancy ones with glittering beads and stuff. At least for a few times, she might enjoy helping you make Christmas ornaments for her family, and friends, and choosing different ones for different people.

M1

Welcome, and I'll cobble onto what Lucy says. I know you don't want to ignore signs of depression, but is she telling you she's depressed and bored? Or could you be projecting? She may be perfectly content doing nothing or very little. It looks awful to those of us on the outside, but it is in fact part of the disease, and in most cases there's absolutely nothing to do about it but let it be.

My partner is in MC and has no interest whatsoever in group activities, so it's been a real challenge. We used to do art projects, but those are beyond her now. She is in bed a lot. When possible we sit outside for short periods, but we mainly watch TV in her room (she sleeps) or listen to music.

H1235

My mom has very limited interests. She thinks most things offered at AL are beneath her. In her mind she is still able to do everything she did 20 years ago. Doing puzzles and playing bingo hold very little interest. I also find it difficult to talk with her. If I tell her about something fun I did she just gives a big heavy sigh (sad she is stuck in AL). If I talk about the grand kids she is upset she hasn’t seen them recently. It feels like she is mad I’m living my life and she is sitting in AL where she’s not allowed to do anything. It is so frustrating.

terei

Talk to the staff. Is there some kind of ‘make work’ type of ‘job’ they can give her? Organizing craft supplies, folding towels, passing out things? Telll mom they need help.

ESkayP

https://alzconnected.org/discussion/comment/220507#Comment_220507

Her "do button" won't do! That's the perfect description, Lucy. Thank you for articulating it like that. I actually considered taking her an audio book, and I like the idea of play-doh just because it might soothe her nerves. She used to color mandalas and flowers, but she's either lost interest or lost the ability. I do remember those hot pad looms! Mom's just never been a crafter. Her mother, my grandmother crocheted enormous afghans and made ornaments well into her elder years, but my mom has never had a hobby. I don't understand that about her, but it's causing her distress now. I appreciate all your ideas. I'm going to try some of them.

ESkayP

https://alzconnected.org/discussion/comment/220518#Comment_220518

You make a really good point about projection, M1. In this case, Mom is actually complaining about boredom and loneliness without my projection or prompting. She used to be just fine with her routine in MC…listening to music, watering her plants, walking the indoor loop of the wing she's in, watching a little TV, and looking at magazines. Now, for the last few weeks, it's not enough. I'm hoping to take her outdoors more when the season changes, and it's cooler weather. She has a nice view in her apartment. Maybe it's just end of summer blahs. I get that too.

ESkayP

https://alzconnected.org/discussion/comment/220523#Comment_220523

Your mom sounds a lot like mine! She also wrinkles her nose and shakes her head at the prospect of doing a craft with the other residence. She helped out with exercise class for a few weeks when she first moved to MC, but they either stopped doing it or she lost interest. She says the residents at the facility just aren't her people. She wants to see her own friends. Well, a few of her friends still do come to see her, but even when they visit, she can't remember that they were there. It feels really hopeless sometimes.

ESkayP

https://alzconnected.org/discussion/comment/220533#Comment_220533

Yes. This is an important step to get the staff involved. They were giving my mom little jobs here and there because she is still very capable physically to perform tasks. I'll follow up on that. Sometimes she seems annoyed or bothered when the staff tries to include her in things. I keep asking myself when did she become so particular, so snooty. I realize that the disagreeable attitude is part of the disease. It's just weird to see it in my mom who was never like that before.

Lucy C

https://alzconnected.org/discussion/comment/220696#Comment_220696

Ok, try this on for strange. As far as I've observed the apathy/loss of executive function thing—and I've been watching it for a few years now—the brain does this really weird thing where it will actually block the person from "doing" and it will provide any number of excuses, even the most outrageous ones, for not doing. The seeming attitude on your mom's part may actually be her subconscious brain putting up that block (for want of a better word) against being forced to "do." Paradoxically, the person does suffer boredom, but their brain doesn't allow them any way to get around that block.

I'm not a neurologist, and I can't come close to explaining it in clinical terms—but I have observed it, and it's one of the most frustrating things in the world, because you can't really solve it. Not only does the executive function break down, but there's quite a bit of unconscious ingenuity and effort that goes into protecting it from having to attempt to function. The closest comparison I've seen is someone who has a self-harm complex: they will literally invent any reason, logical, illogical and perhaps not even recognizable to themselves as to why they should be "punished" and therefore engage in self-harming behavior. It goes way deeper than the conscious rational level of thinking.

You may find, as the disease progresses, that this does subside. While it lasts, though, it can drive the patient and the caregiver both a little crazy. If it doesn't cause other problems (and you aren't in an overly populated area), you might ask your mom if she'd just like to go for a drive and see the countryside. She doesn't have to "do" anything, but she can enjoy the passing scenery for a change. Sometimes that works for some people.

ESkayP

@Lucy C I had no idea that the "block" was even a thing. It definitely sounds like that's what is happening with my mom, though. It's fascinating and truly heartbreaking at the same time. I think she would like a drive in the country. I'm going to take her when the leaves begin to change. She likes that.