Things are fairly peaceful and relaxed, as they’ve been for several months. I have gotten back my ability to read, for one thing – when things were stressful all the time, or threatening to be stressful, I couldn’t focus enough to read. Now I feel like myself again, with a few books lying around that I’m working on. I do have to plan to read – otherwise I get caught up in housekeeping or errands or others tasks which seem to expand to fill the time allowed. The frequent meltdowns have ended, and the constant, episodic health panics have eased, and I’m super glad for the relief.
How do things go around here now? Well, I get up before J does, in order to get a few things set up for the morning and if possible to get an hour or so to myself to just wake up slowly and pull myself together. I set up the coffeepot and leave a sign saying “All set, just switch on” – J can still do that, or nuke up a cup if it’s cooled off. But she cannot hold any instructions in her mind.
This problem with instructions is a frequent stumbling block – J will say, “Just show me how to”… turn on the tv, operate the new coffeepot, etc, without realizing that the changes in her memory are real and affect her ability to learn these things now. So, I will just deflect by muttering something about how ridiculous just turning a tv on has become, with all the remotes and pieces of equipment, or how the new coffeepot makes espresso, which I prefer, etc. Or, once in a while she or I will venture a calming, “Well, my/your memory isn’t quite what it once was….”
I set out lunch foods on the counter, encouraging independence in this as long as possible. But I plan and cook dinner now, in order to avoid dangerous use of stove, or the consequences of forgetting some procedure. Ideally I would have little tasks broken out and easy for J to do for each dinner, but the reality is that by evening I’m tired and it’s quicker to do it myself. It takes energy to figure out what part of the dinner prep J can do successfully, without setting her up for frustration or humiliation, and also without awakening her expectation that she will participate more fully in meal prep.
We go out to lunch or supper a couple of times a week, for the variety, for something to do, for the socialization, and because that is about the right level of stimulus these days, for J, and she is still “successful” at it. She can manage a restaurant setting with familiar people, and recall it as enjoyable (if she recalls it at all).
Our evenings are exceedingly routine, which is working for both of us. At 5 we sit down with a drink or glass of wine, which has been our custom for years. Usually we eat dinner while watching local news at 6 for a half hour. This, because conversation is slender these days, especially by the end of the day. Then tidy up and take a short walk and settle in to watch the Newshour at 7, and then an episode of something – documentaries are working better than plot-centered dramas now – and J is heading to bed by 9. I’m very grateful for the streaming options which mean we no longer have to wait for a disc to arrive! I’m working hard to find documentaries that are interesting to both of us – I really miss being able to watch detective series together, but it is too hard on J so I usually don’t try. After J goes to bed, I finish cleaning the kitchen, and depending on my energy level, watch another episode of something, or read until heading for bed, usually by 10.
So, there’s not a lot of variety in our schedule, but the trade-off is that it is not too challenging or frustrating for J, and things are more peaceful than they’ve been in years.
J’s mental clarity comes and goes – in the best of moments we enjoy banter and small talk like we always have, but at some point a memory gap appears and can stall out the conversational thread and leave us just sitting there. She is oriented to place, pretty much, but time and people can be difficult for her to recall. If I supply the information about so-and-so, who she can’t remember, by the time I’m done with the clarification she can have forgotten what the original thread of the conversation was.
It’s still strange for me when she is “just sitting there” – which is more and more of the time. As I have said before, it’s like having a guest in the house, who relies on me to take the lead in conversation, activities, food and everything else. We’ll work it out, it’s just different. My main organizing principle, I guess you’d call it, is to arrange things so that J is not confronted with difficulties she can’t manage. This involves “behind the scenes” work and awareness on my part, but helps head off frustration and saves both our nerves.
Thanks so much for reading, all you friends, family and followers of the blog – I hope this window into our lives helps others in some way, as it helps me to step back, collect my thoughts and write.