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.