You would think that 26 years as a speech pathologist, most of it spent working with elderly patients, would have eminently qualified me to be a full time caregiver for a demented parent. HAHAHA. Wrong. I saw pleasantly confused people for a few hours a week, set up routines and schedules and pill planners to help them remember their meds, drew simple diagrams and wrote simple directions and notes so they could tell the difference between their TV remotes and their cell phones, and then went on to the next patient. The thing I didn't see, and apparently nobody ever got around to telling me, is that it seems that stuff doesn't work, at least not consistently.
Mom's medications haven't changed significantly in four or five years, but every day she acts like she's never seen or heard of those four pills before. I hope this post makes some sense, as while I am trying to write she is again reading her written schedule to me, has been for the past 2 1/2 hours, and has now dug a shredded old copy out of the trash and is challenging me on the slight differences in wording. When she was in the hospital last fall a lovely speech pathologist came by and tested her. "Oh, her reading comprehension is good, you can use written prompts for her." Um, no. I just figured out the other day that when she read her pill schedule, she thought "9:00 AM" was the name of a pill. So I have to phrase things very carefully. "Mom, check your diaper" doesn't work anymore; it's too abstract. It has to be "Mom, is your diaper wet? do we need to change it?"
That being said, I'm certain I'm not the only caregiver in the world confined with their loved one for long periods of time. I read an article the other day that asked "do you sometimes go an entire day without seeing another adult other than your loved one?" To quote one of my favorite internet contractions, LOLWUT? (translated, I'm laughing in disbelief) It's more like a week for me, generally. If speaking to the cashier at the grocery or the gal at the restaurant drive-through doesn't count, make it a week and a half. Thus, I'm usually in search of some way to keep from losing my mind.
I read a lot, and always have. My genres of choice are science fiction, fantasy and horror. Right now I'm rereading Neil Gaiman's American Gods in preparation for the upcoming TV version. It's an amazing book, and Gaiman is one of my favorite authors. Eric Kripke, who created my favorite TV show Supernatural, cites him as a big influence. On the flip side, I've written my own stories since I was quite small; I remember collaborating with a classmate via phone on a Nancy Drew-style mystery in first grade! The modern model of self-publishing finally enabled me to get my stuff read. (inserts conveniently placed link to my novel King's Game)
I love making things, all kinds of things. At present, things made with yarn are among my favorites. I knit yoga socks and crochet coasters shaped like cat butts (yes, seriously)
I participate in Ravelry, the yarncraft social forum, where we talk about much, much more than yarny things. That brings me to something I've found to be more important than I thought: interaction with others. Okay, that sounds self-evident, I know, but when I had to quit work last summer, it really didn't occur to me that I'd be pretty much cut off from the outside world. At that time mom was confused but was able to maintain herself for an hour or two so I could go eat lunch with a friend. Now, I'm lucky I can go to the bathroom without her forgetting where I am and starting to yell and wander around looking for me. So things I can do while sitting with her are of primary importance.
I try to do productive things, just because that's who I am. Sometimes though, I just cannot brain anymore, and I have to sit and play a dumb video game for a while so my grey matter can rest. I also discovered I can watch cable TV on my laptop, so I can do that while sitting with her (no TV in her bedroom) as long as it's something I don't have to follow a plot for. That means a lot of nonfiction. Good thing I like to watch people ghost hunting or shopping for RVs or baking!
Is this sounding like non-stop whining? I hope not. That's not my intention. When I start to write about something, though, sometimes a little backstory seems called for so you, gentle reader, can understand where I am, where I'm coming from and where I hope to be going.
Speaking of going! Another recent addition to my stable of sanity maintenance mounts is this RV dream. Next time I'll talk about where in the world that came from and a bit more. If you are a caregiver too, what do you do to keep your self (space intentional) together? Please share!