Status of limitations

Last night I posted really late.

Tonight I was trying to get my rant going, and it is again really late. I don't think I can do a good enough job of it. I thought about getting my journalism bit in, but I may want to take that a little deeper, where putting it in next week makes sense.

I am going to give a little update on me instead, which I had thought I might do next week or the week after anyway.

The most obvious status update is that I am so tired. It doesn't even make any sense, because it feels like I am not accomplishing anything. I have been trying to think about potential health issues, but my sisters have similar tiredness issues, and it looks most like it is the mind-body toll of living with dementia. That was the most obvious answer.

I avoided it for a long time because then it feels like being a bad daughter, and assigning blame that I don't want to assign. She's not even that bad, in a lot of ways. I can see a lot of things that could be worse. It is still tiring. My sisters have demanding jobs, and I have this.

To be fair, I feel like I am doing really well at it. She is mostly happy, and we have gotten better at navigating certain things. With a progressive condition every time you get adjusted it changes again, but it is something to have successfully adjusted over and over again.

The biggest part of what makes me sucessful is everything I have let go. When this started, I was going to cure it. Even in June with her last MoCA test, I was thinking about ways of working on the specific testing areas. I have a stack of connect-the-dot worksheets on my desk just for that. It wasn't to game the test, but if exercising those areas could slow the progress... but it may not work that way. Also, people with higher scores are leaving the house in their pajamas and not realizing it, so you can't depend too much on the number. It presents and progresses very individually.

My biggest concern is that I am forgetting how to relax. At that last assessment, I was reminded of the tendency for dementia patients to wander. Shortly after that, I got two glimpses of how it could happen, with a very small distraction or moment of restlessness. Nothing terrible happened either time, but then later as I was taking a deep breath in the shower I gasped; what if it happened then? That scared me.

And still, we are mainly getting along okay. I know people who have it much worse. My faith is a huge help. There are still a lot of fluctuations with fear and sadness and worry. I might have a lot of difficulty responding to "How are you?" right now. Maybe I am several contradictory things at once.

Actually, I was asked recently how long I have been care-giving, and that was really hard to answer as well. Definitely since I lost my job, and when I realized that I could not have another job, but what about when I started telecommuting and it was such a relief to know I would be there? What about when I was still working downtown and I would do meal prep and write notes to give a schedule the day before? Did that count? Because it's been a while.

Currently the blog has been a source of stress. The time writing and the time spent listening to the music for band reviews is becoming harder and harder to find. I keep thinking maybe it is time to give them up. I would miss them, but also then I think "Now? I am so close to finishing my Black History Month blogging!"

Right now it still seems to serve a purpose, and I still usually like what I write, but that could change. If it does, this will be why.

Right now, anything I do that isn't care giving is a major accomplishment, even if it wouldn't be for someone else. You have no idea how much feels overwhelming and then gets done anyway.

The care giving is a pretty good accomplishment too. It has some complicated feelings associated with it, but I know it matters and is where I am supposed to be.

It also leaves me very tired.