Some progress has been made with the respite situation – J has remained generally positive about the Respite program on Wed and Fri afternoons, although she did not go yesterday because of prior commitments. But she has been three times, and hasn’t nixed it yet!
On Monday the new companion person, S, came to play recorder for an hour or two in the afternoon. I stayed home, but out of the way, so they could get acquainted and focus on the music. Happily, I heard sounds of duets wafting from above….which told me that S had enough sight-reading ability to pull this off. It was amazingly relaxing, not even being out of the house, or “doing something”, just to have J amused and engaged with someone else. Next Monday I hope to go to my support group while they play.
I don’t know how we will approach morphing the recorder-playing into more general companioning, but will cross that bridge later. When I met with S and the agency director initially, we jointly determined that just saying that S was a friend of a friend, who was interested in playing recorder again, would be enough justification to get started. I’m wary of mentioning the “companion” element after the fireworks last winter around this issue.
Now, about the confusion that people with dementia can experience, and the effect it can have on the partner….last week I noticed on the wall calendar that J had written in “Book Group” on Tuesday this week. I know that her book group meets monthly on the third Wednesday, so I thought to myself, “Let me just change that to Wed., rather than get her all involved in feeling bad about putting it on the wrong square, or, even worse, her making multiple phone calls and endless handwringing about when WAS the group supposed to be, etc.”
Yesterday, Wednesday, J gets all ready to go to group, walks off down the street (it meets a block away from us) and in 4 minutes is back, stomping off her boots…the husband of the book group member said they met yesterday! So, I felt really awful about how I just assumed J was wrong, and didn’t check with her – mea major culpa! And I decided to email the book group host to say it was my fault J missed the group.
A few hours later I got a reply, saying “Oh, the group doesn’t meet til next Wednesday, the third Wed as usual…”! So, J was wrong about Tuesday, I was wrong to change it, and she hasn’t missed it after all. Turns out the husband knew his wife was doing something with friends on Tuesday, but it wasn’t the book group! Sheesh!
And then there’s the theory of boredom: since Monday was busy and Wednesday was going to be even busier, I thought that having a quiet Tuesday made a lot of sense. You know the relief you get when things have been going right along, and you have too, and you come across that wonderful no-activities day? Well, it turns out that for J, since yesterday is gone without a trace, and the vision of tomorrow is fleeting at best, today is all there is. And if nothing is going on, she is bored, not relieved! She waits for something to happen, and paces around, worries about her health, tries to figure out which book she is supposed to read for the book group (we still thought it was Wed), and all these dithery activities will expand to fill the time that isn’t otherwise structured.
But today, Thursday, our kind neighbor invited J to the gym so they are at exercise for an hour or so, and I could get to this blog. And tomorrow is Respite group in the afternoon so I may have three hours to myself, worry-free. I feel how lucky we are in having a good relationship going into this situation, and that J is very good natured. The respite for me is just to relieve the constant attention I need to pay to everything.
Otherwise, we are puttering along, it’s really winter now with 4-5″ of snow on the ground and temps in the 20’s all day. The sunlight bounces of the new snow and beams into the house, boosting the brightness indoors incredibly. Got the roof rake down from the garage rafters yesterday and did the first pass of the season. And having some regular respite activities all planned has given me back 30-40% more energy than I’ve had in a long time.