I wanted to write a post about my grandma today, something like a My Grandma Reviews: What She's Been Going Through. She's been back at home for about a week now, having physical therapy and occupational therapy and language therapy each day at the house for about an hour, and spending the rest of the day not doing all that much, and she's had good days and bad days as far as her mood and energy level, probably partly because the medications she's taking are still being adjusted and partly because she's bored sitting around the house and partly because she's a little down about her situation and all of this having happened.
Her deficits from the stroke are pretty minor all things considered, but still pretty devastating for someone who was living independently and getting around really well by herself, going places and doing things every day. She can't read yet, unfortunately. We're hoping that'll come back. I keep pushing my mom to go over to her house with some children's books and try to push with the pictures and help her figure out the words and try to regain some of the reading. I'm not entirely sure what her brain is seeing and not seeing as far as what's making the reading difficult -- like, she's seeing the letters but it seems like, from what she's saying, she can't really process them into words and get meaning from them. But the brain is weird -- she can write without much problem -- if someone dictates words, she can write them; if she wants to take down someone's name or phone number, she's able to do that; she's able to translate print to script or script to print without a problem; she just can't read any of it back. So that's frustrating to her. She's also having trouble remembering names, although that seems to come and go -- it doesn't seem like there's a lot of memory loss more widespread than that, but names of anyone outside of her family are escaping her at times. And she's a little wobbly on her feet, but walking unassisted without too much trouble and the unsteadiness is likely more due to the blood thinner they've put her on than anything stroke-related.
What's perhaps frustrating her most is that she's completely self-aware about everything that's going on. She's been talking about how what's most crazy about all of this is that in conversation with her friends, no one feels like anything is wrong with her. She had some friends visit and she said she was completely able to fake it, she can follow enough of the conversation that she seemed completely herself and they kept telling her she seems back to normal and nothing's wrong -- but she knows she isn't processing information in the same way, and that the gears are moving more slowly in her head, but when she says that, no one believes her. And she feels like when she talks to people they expect her to be the same person she was, and she doesn't really feel like they understand what's going on, because she seems so much herself.
It's been hard for her to sit in the house all day, because she's not used to it. She has a full-time aide with her for now, and she likes the aide, but it's not really company in any fulfilling way. It seems like there are days when she's been a little more energetic, and she's taken a walk with the aide, and she's been able to watch TV and get engaged with whatever's on, but there have also been a couple of days (like today) when she's saying that she's not understanding the TV as well as she was yesterday, and the people are talking too fast for her to fully process, and that's really scary for her, because she feels like it means she's going downhill and not getting better. But at the same time, in conversation on the phone, she's lucid and with it and able to articulate everything that's going on, and ask questions about what's going on with me, and it's a normal conversation, and she remembers what we've already talked about and there's not really a noticeable cognitive deficit. The biggest difference from before, just on the phone, is that she's pretty clearly quite sad and bored and doesn't know what to do with herself.
So the challenge at this point, I guess, is to figure out how to add back some routine and meaning into her life -- to figure out what she's able to do and derive pleasure from, and try to start stacking her day with those types of activities. Which will be easier once the therapy ends a week from now, because she'll have the day free to go somewhere. But it'll also be harder, because she won't have those three hours of activity and it will really be about filling the entire day, somehow, with stuff to do that can keep her mind off of just sitting there and feeling sorry for her situation.
I'm not sure I think being at home with the aide is the best situation for her in the medium- or longer-term. But we're not sure she's functional enough for something like assisted living, where she'd be on her own in a small apartment -- I'm not sure she can do things like work the remote control for the TV, or cook for herself (not that she'd have to do any cooking, but even just to boil water and remember to turn off the gas -- I *think* she'd be okay with things like that, but I'm not sure, and we haven't really had the chance to test it and see). If she could be in assisted living, at least there would be people around her that she could spend the day with, and activities and meals and socialization without having to get on a bus or in a taxi and go somewhere. But it would also take a big adjustment to be out of her house and in an unfamiliar place. So I don't know where the scale would balance, and it's not really up to me anyway.
So given that for now she's at home with the aide, I keep trying to think of things she can be doing. Not that she's going to play with toys or anything like that. But without the ability to read, or the mobility to be doing anything more active than taking a walk outside or getting in a taxi and going somewhere, I'm not sure how she's supposed to fill her days. I'm not sure how anyone fills their days, really. I'm not sure how I fill my days, sometimes.
It's weird to me to think about how tenuous our hold on happiness and fulfillment really is -- everything, when analyzed enough, can be stripped of all its meaning pretty easily. I'm writing a script right now that I can either care about or not. People will either read it or they won't. Thousands and thousands of people write things, and very few of them get anywhere "real". Yet there's still that drive to write. Without that drive, what is really the "reason" for doing anything? Historians, scientists, anyone can spend years working on a paper or a book that not many people will read, and won't change the course of the world, but still they do it. People get themselves to care about a lot of things that, objectively, might not be that important to care about. But once you lose that feeling -- once you stop caring about too many things -- you're in this hole that you can't dig out of. My agent sent me a stack of pilots for the fall -- some coming to TV, some rejected. And some of them I watch and am really impressed by, and can see why the writer cared, and can see the inspiration and energy behind them. And some of them I watch and can't see how anyone could care, and think about the hours spent writing, casting, filming, and it's all for what? For a mediocre 22 minutes of tape that a hundred people will see, on DVD from their agents, and all hundred of us will think it's a waste anyway. Okay, clearly, I'm getting to an unhealthy place here, and it's become entirely about me and not about my grandma. But I did have a point in here somewhere...
Okay, here's my point. I want suggestions for things my grandma might be able to do to regain that feeling of satisfaction about her day, activities and pursuits that can give her days some meaning or at least some distraction. What do your grandparents or parents do with their days when they've lost some of their mobility or energy? Or is it just about sitting there in front of the TV, sadly, waiting to die? She gets pleasure from talking to me, she gets pleasure from talking to the rest of her family and to her friends. But there's a limit to how much pleasure she's really getting from being on the phone, or having visitors come and see her. And once the therapy ends and her days are more available to her, I'm hoping she'll get back into a routine, and start going to the senior center again for classes, even if she's not able to get as much out of them... but I'm worried she won't want to get back into that routine, and that she's setting herself up to just sit there in the house feeling sorry for herself. And I don't know how to prevent that, or make her see that there are still things she can enjoy and get pleasure from.
I told her to try writing about what she's feeling, even if she can't write the words as quickly as she can think them -- that the aide could take them down, or I could take them down, but that maybe it would help her if she tried to tell the story of what's going on in her head. And she said she doesn't know if she has the energy for that, but maybe she'll try. I don't know. It's sad to get old.