Tuesday, February 28, 2017

Back from Cali

After posting yesterday, it occurred to me that it might have been more helpful to post what had been covered (and changed from red to black in the spreadsheet). I might do some reviews as I get further along, but I am focused more on what needs to be done. Also, things always come back.

For example, I remember thinking about the Disneyland trip in advance, and thinking that would be a good time to cover the "Worried about Mom" line of the Problems, but then I saw I had already covered it. Writing once does not mean I will never write again, and I would like to say a little about the trip.

It did give me fodder for the travel blog (which will include a post on traveling with special needs), so that met one purpose. Another hope I had was that it might reset Mom's brain a little, so that maybe she would recognize home and my sisters. Before we even went I realized that she does recognize them sometimes, and that doesn't stop her from not knowing them a little bit later. Both ended up being true, she was more accepting of this being home the night we got back, but there are still times when she doesn't know. It did at least give a break to my sisters for being asked where they were, and a chance for Mom not to obsess about where they were, because obviously we were away and they weren't going to be there.

I said that this trip was for Mom (the birthday retreat was for me), but my family was hoping it would still be a break for me. A family friend thought it would be horrible for me. The reality was somewhere in the middle. It was not the type of vacation that I normally take, where I like to be pretty active. We sat and watched a lot. I went on a total of five rides over the two days, plus the Enchanted Tiki Room. I guess the Monorail can count too. Generally we average thirteen rides a day. I knew it was going to be like that.

When I go on trips other than Disneyland, I try and see as much as possible. I kind of got that in here, making a point to get the two refurbished rides and try some new restaurants. Also, Disneyland is a great place to sit and watch, even if I normally prefer to spend less time doing that. It was a break for Mom, and in that way it was a break for me. I still worried and had to be attentive, but it was still a change of pace; that makes a difference.

I came away feeling pretty good, but then we landed and it was really cold and Mom's coat - which had been fine for the trip there - was insufficient, and we had to wait a long time for our ride, and the furnace had stopped working (again), so she was still cold when we got home, and I have a two-faced person I am dealing with that is hard. Also, I had been really restored by the birthday retreat, but then there was so much going on that I had not planned for other social or alone times, plus I had not thought about how the trip itself would take enough out of me to require recharging, and then everything looked kind of bad again.

I worked out some more alone time and was starting to recover, but then Mom started getting really emotional and morbid, which is why we are working on the medication change. That's just how it goes - I need to take care of her, and I need to take care of myself too.

I have been thinking about it more, because it looks like the next step is sleeping in her room at night. For a long time she kept being surprised that I wasn't coming with her, I think because she was so sure we were guests here. I thought it was better to reinforce that we were home and we all have our own rooms.

Lately though, she call me more at night to check where everyone is, and physical proximity has been a big issue for her comfort. Also, one of our cats keeps calling me in there. I go and stay for a while, but then come back to my room, and now I am feeling like maybe I should just stay. Part of me is rebelling, because it's giving up one more space, but if it makes other things better, it could balance. I still need to remember to socialize and to get time alone, and to explore new things. It is critical. 

I had an image come to me a while back. The worst part of Alzheimer's is that it keeps getting worse, and then death. It seems inevitable that there would be some relief with that, and a lot of guilt with the relief. I am trying to navigate now so that I can be okay with her life and her death both, which may be too much to ask for. But in this image, I could see myself being so depleted by caring for her that upon her death nothing was left and I got sick.

That is not impossible. I had the thought before reading Rampage, but two of the teachers who had harder times after the shooting got very sick, and their diseases were ones that made the stress connection plausible. Part of that is that they were not given any time off to recover, because the administration decided that the teachers needed to be there for the kids. It was good to care about the kids, but they needed to care for the adults too.

I can't forget that balance now. I want to be here for my mother as much as she needs me, but I want my life too. I want us both to have beautiful, radiant things. It's worth fighting for, but more to the point, it's worth planning and asking for.

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