Things continue fairly calm here. Not a lot new to say, except that there is very gradual progression of deficits with J’s memory and grasp of things. The easiest way to characterize this is “lack of overview”. That, as I’ve written before, affects our ability to have substantive conversations that involve problem solving, strategizing or even simple planning. I do not discuss weekend plans, for instance, until the weekend is there – and I pull out a couple of options for her to choose from, rather than outlining the whole weekend, the people, the places, the activities we might see or do.
There are some things that are in pretty good shape. J is warm and pleasant with me and with people we encounter. Her rote conversational skills, sense of humor and social skills are largely intact, with the most noticeable problem being remembering what she has already said in that conversation. Every so often there is a lapse in judgment, when she might offer a strangely frank opinion where formerly she’d have been guarded or polite, but this is fairly rare. And her physical health continues to be very good.
Some people with dementia experience word-finding problems, but this has not been evident with J. Time sense, however, is severely affected – season, month, day, year, how long ago something happened – she struggles with determining these things many, many times a day.
As for me, I’m relieved to have a steady schedule of respite for at least a few hours most weekdays, and in this relief have begun to take a look at activities for myself. It was very, very helpful to really focus on caregiving as my job, when I found myself torn in pieces trying to keep up with all the dimensions of my life. I am less torn now, and able to consider adding back in a yoga class once a week, and see how it goes.
It’s the fatigue, though – underneath, all the time, for several years now is a constant fatigue – from watching and being “on duty” 24/7, to be sure things go well, that J is safe, that her deficits don’t get her in danger of any kind, plus the household management itself, which has grown from half, five years ago, to almost all, now.
People encourage caregivers to “take care of yourself”, which I take seriously. The tricky part is knowing how much energy I’ll have on any given day, and whether something like a yoga class or other scheduled activity can give back more than it takes. Well, we’ll see!
I seriously don’t think I have any more fatigue than anyone else in this type of situation – I eat well, sleep fairly well, enjoy good health and am well-resourced in every respect. It’s not that the job, now, is particularly physically demanding, but rather it’s the attention required which is such a different type of mental energy than I ever needed to use in this relationship before.
I’m thinking hard about how to go the distance, where it might well be a very long haul. What pace do I set that I can maintain for several more years, say? Fortunately, that type of analysis comes easily to me, from years of long-distance hiking….I am pretty suited to long, slow projects filled with routine and relatively few spikes of unusualness.
So, stay tuned, if you like – this type of blog is inherently sobering, as is the situation we’re in, but writing has been truly helpful to me, just as knowing kind readers are out there has been. Thanks for reading.