My 2020: the biggest change

I haven't posted here for a month and a half.

(Georgia! Vote Warnock and Ossoff!)

A big part of my silence (and I still have several half starts in my drafts folder to prove it) is that regardless of whatever felt important to write about, there were always new developments coming in. There were new new facets to the previously considered topics and completely new topics and there was very little that was not critically important.

2020 was just a lot, you know?

Also, realistically I was still recovering from care-giving and depression. I tried to perform like I was recovered too soon, especially because I had a hard time admitting my actual level of impairment.

Nonetheless, a lot happened. I am proud of a lot of it. I want to build on top of it. I am still sorting it out.

2020 actually started out fairly well for me. I was finally getting paid for caring for my mother. It was 22 hours a week pay for what was realistically more like... well it wasn't a full 168 hours per week, because she was pretty good about sleeping through the night, and we had worked out respite where I was getting out for at least 6 hours a week.

I'm not saying the compensation was great, but I was suddenly able to replace shoes that were falling apart, or to go see a movie (cruel joke oncoming, but until a little into March, that was great). It was a huge thing. 

Just before going out ground to a halt, I had a great night out with a friend. We went to dinner and the staff was offering us things off the menu, and free dessert, and then at the concert we had great seats and talked to one of the musicians after; it was really cool! And I paid for dinner because she has been buying me dinner for four years! Amazing.

Then things went full pandemic. Respite choices became severely limited, right along with ways to amuse and distract my mother. That probably did not cause the next devolution, even if it didn't help. There have been changes and downgrades all along this ride, but she did lose her attachment to this house and these family members, and even these pets, and then she needed a lot more stimulation. It was time to look at memory care.

Yes, "I" was memory care. What do I say? We put her into a home? This was a home too. It just didn't meet her needs anymore. 

That has been a hard thing. There are two things that make me extremely grateful.

One is that there was absolute clarity. As strongly as I knew that I need to stop job hunting and focus on caring for her in 2016, that is how much I knew that it was time to get her into care. Even a week before, someone asked me about that and it wasn't the right thing to do. Then it was. It happened that we found an opening that has been wonderful for her quickly.

Now, quickly means that we got her moved in about six weeks, with some questions and scrambling for solutions, but I know many people have had a harder time. We were blessed.

It turns out that me briefly getting paychecks was nice, but the most important part of that was having gotten Mom onto Medicaid, which was required for reimbursed care. It meant that we could afford a memory care facility, which otherwise would have been impossible. 

Seriously, at other times we had talked about the feasibility of me going back to work and using that income to pay for care; I have never had any job that would pay that much. Given their expenses, it's not that the price is wrong. This place is great and she is doing well there. But it is a growing need that will be out of the reach of many. We need better systems.

Speaking of those systems, one issue with writing about myself has been fear of doing more than hinting obliquely at any changes in income or household. I was filling out reams of paperwork trying to keep everyone safe and with a roof over our heads. It felt like any shift in balance would throw us to the wolves. I repeat, we need better systems.

So that has been the biggest change, and one that I could never have predicted. I had truly thought that the next change would be Mom's death. I had done research and made notes so that when that happened I would know what to do and be able to handle it. 

Somehow, I am no longer caring for her, and yet she is alive and happy. She is dancing all the time, because of exercise classes and happy hours, but we didn't even know that was her inclination. That was a change in her too, but it seems like a good one.

Another vision I'd had was that perhaps if we did move her into care, I would feel like I should visit all the time, so there would be a regular job and then visiting would be like a second one. Instead, we can't really visit, but it seems to be better that way. 

It will change again, too. There will be more things that hurt along the way. Still, after all the agonizing that there could be something never envisioned, and better... how did that even happen?

Of course that means I am no longer getting paid, and so I am trying to re-enter the workforce during a pandemic. It's a challenge, but we've survived a few of those.