NEW: Documentaries, above, lists videos that I have found helpful – check them out if interested.
The other day we had a conversation that startled me: J was remarking about some slacks that were no longer comfortable, so I suggested she go get all the slacks out of her closet and we’d sort through and see which ones fit, which didn’t and what size we should look for if getting new ones. So, she went to get the slacks out, and as she was putting them out on the bed she asked what it was we were doing. I said we were seeing which slacks fit, and which didn’t. She began trying on slacks, but lost track again and asked, What is it we’re doing? I was keeping track of which brand and size was right, since it became clear that she could not manage this task. It was as if I’d asked her to do complex equations for me, in her head. We made two piles, one had slacks that didn’t fit well, and the other, ones that were okay. She sees that we are done with sorting, and goes to put them all back in the closet. I suggested I take the ones that didn’t fit and store them upstairs. This was surprising to her. She had already lost track of what we were doing.
The next day, she was picking up some books on the side table and musing aloud which ones came from the town library and which from the “little library” kiosk down the street. There were two of each. I suggested that the town library books had little number tags on the spine. Again, she picks up a book and wonders where it came from, and where it should go back to. I mildly said, well, library books have labels on the spine and inside. This had no effect – did not awaken recognition – but rather she continued to pick up a book, wonder aloud and set it down, veering close to frustration in not being able to figure this out. Ultimately she did not get worked up about it, – rather, it sort of faded off.
There was something about these two episodes, with her being flummoxed with what I thought of as extremely simple, binary choices, that was heartbreaking. The only bright spot was that she did not become terribly upset – just mildly frustrated, and turned to something else. But this is new, getting all snagged up with what looks like a simple either/or choice.
This time of year a lot of family and friends are traveling to warmer climates for vacations, so J’s frequent topic of conversation is how fun it would be to go to Florida… I would love the change of pace, too, but there are some factors that are simply invisible to J – planning travel and lodging, shutting up the house, dealing with bills and mail, car rental and driving in major Florida traffic, all while looking after J, among others – and she is both unaware of what’s involved and unaware that she cannot help with most of that now.
Then there is the actually being in another state. We could visit friends, for a bit, but realistically we would need lodgings of our own. By the time we’d made all the plans to leave a house in the winter, we’d need to stay a while to justify those efforts. Our life is exceptionally routine right now – Monday and Friday afternoons, and Wednesday morning and afternoons J goes to the Respite group. Tuesday afternoon she plays recorder and sometimes does other things with S from the companion agency. Thursdays she goes to the fitness class with a neighbor. Meanwhile, I have a support group for caregivers on Monday afternoon, and counseling on Thursday mornings. I can’t quite imagine how to arrange a similar level of both activities for J and respite for me in a new town. I could attend a support group in Florida, but I don’t think that it would be as easy for J to attend a Respite-type group. She’d say, “I can go to group at home, I don’t need it on vacation!” .
Then there is health. Although her health has been good recently, the stress of travel could easily generate a health crisis, and we would be faced with new doctors and hospitals who know nothing of her history. She is totally unable to give her own history now. She also has had some serious conditions in the past which, if health care providers are new to the case, would likely lead to just-to-be-on-the-safe-side tests and procedures. Diagnostic testing is really difficult for a person with dementia, and maybe even more difficult for the caregiver, especially when the outcome is likely to be negative.
And finally, after spending some weeks in Florida and managing to get ourselve home in one piece, a few days later she will turn to me and say, “Wouldn’t it be nice to go to Florida like our friends do?”
If it sounds like I’m trying to justify not going to Florida, you’re right. I often feel badly about not wanting to take her, even though these realities form bigger barriers every year. Not sharing the perspective is tough, although her inability to see what I see may be keeping her calmer these days, and calm is a really good thing to have.