It’s a new year and things continue fairly calm – a real blessing. There’s been time to reflect and energy to get to some projects that have been on the list for years, in some cases. The stair carpeting project, for one – now, when I look across the living room at the stairway I get a little burst of satisfaction instead of a cringe. These little bursts of satisfaction are so helpful, when the life we are now living is so devoid of the major satisfactions that characterized our life until a few years ago. I’m getting my study organized to accommodate our joint finances, as well as to provide a respite spot for me, and finally got an appointment with the financial advisor for a major review of things. Got rid of the old printer that never worked reliably and got a newer, smaller one with a fax capability that might come in handy down the road, when getting out becomes more difficult. Accomplishing practical tasks like these has been pretty rewarding, after a couple of years of just trying to keep my head above water.
On the other hand, the little cheerful moments when you share a funny observation or a charming bit of gossip (ie, I noticed a neighbor coming out of another neighbor’s house early this morning, maybe they’re getting together….!) – these are so few and far between now, since each one requires background to understand. The people being referenced have to be identified to J now, and that almost always dead-ends with her saying she doesn’t really remember the person. Even saying, “the person who lives THERE”, and pointing to the house, doesn’t do it. I am learning to stop and check inwardly whether J might be able to know what or whom I’m talking about before I launch into the anecdote. But this holding back drains a lot of the casual zest from our relationship that once was abundant.
I’ve also realized another aspect of our situation – since I did not raise kids, this is the first time in my life that I have had full responsibility for another human being. This has morphed slowly over the last 4 years, from the occasional correction of a mis-remembered name, or the supplying of a date or other factual tidbit, to virtually full oversight of every aspect of J’s life. And the hardest thing about this responsibility is that I have it whether she likes it or not. Most of the time it’s fine, but having to make decisions for which she lacks context and couldn’t understand the context even with thorough explanation – that’s hard, and at times, agonizing.
Our partnership was always characterised by gratifyingly thorough accord, or the ability to reach that accord with fairly little effort. In fact, the talking about plans and reaching agreement on what to do and how to do it was very satisfying most of the time. Now, we can do very little of that – J cannot hold in her mind the plan for the morning, not to mention the whole day or tomorrow or a week from now. I never realized how complex that ability is, until seeing it become impossible for a person.
So this then leads to the dissembling that I have talked about before. Dissembling was never something I wished to get good at, but it is necessary in our lives now. Call it simplifying, maybe, and it goes down easier, but it’s nothing I’m proud of. I imagine a whole book could be – and probably has been – written about work-arounds, dissembling and other strategies for coaxing a person with dementia into doing what needs to be done, or putting up with what needs to happen. But it is definitely a different dynamic from what characterized our first 20 years.
Meanwhile, I have begun talking with the woman from the companion agency who comes to play recorder with J about expanding hours and adding different activities into the mix. Probably that will look like going from 2 hours to 3 hours one afternoon a week, and maybe up to 4 hours if J does okay with it. I would like her to have more activities that she is enthusiastic about – she tolerates the respite group, but would benefit from more engaging activities I think. I benefit hugely from her being willing to attend the group two afternoons and one day a week, so will plan to keep this schedule if it continues to work out well enough for J.
In sum, J is doing well in that her health has been good this winter, without the frequent visits to doctors of past years. She seems content and calm, much more content with sitting in the recliner and just looking out the window than even a year ago, when she would always pick up something to read when she sat down. She still reads, but gets exasperated and flings the book or magazine down more often. She sleeps longer – goes to bed a bit earlier and gets up the same time or later – which doesn’t seem to be harmful, and in fact is familiar to me from other members’ reports from my support group. She can nap for an hour or more and still go to bed at 9pm and sleep through the night. She walks most days, for one or two twenty-minute stints. I need to be careful how fast I walk because she will try to keep up and will seem to be able to, but actually is safer and happier at a slower pace.
And me? Well, I’m calmer too, which is good. At the same time, more oversight of both the big picture and the fine details is required, which takes energy. The difference now is that instead of being a series of sudden shocks throwing me off balance it’s more like a steady drain, which is actually possible to get used to. The sorrow of it all comes through, daily, and I have to find a way to live with that. Efforts to connect with J around our common plight have gone nowhere, and I have given them up at last. Fortunately we share companionable warmth many times throughout the day, for which I am profoundly grateful.
Thanks as always to our wonderful family and friends, neighbors, my support group buddies, blog buddies, counselor, respite group and the companion agency, for listening and talking and being there. I realize that each of you is dealing with your own stunning losses and struggles and that makes it the more touching when we are able to connect. Everybody, take care!