Mid-stage dementia – good news and bad news. The good news is that half the time, on a good day, things are fairly normal: casual conversation is possible, some smiles or laughs happen, old jokes get referred to, the subtleties gathered over years of relationship are alive and well. Dishes get done or dinner gets cooked. Phone messages are taken accurately.
The bad news is that the other half of the time J can’t remember what day it is, or how to find out…grabs the nearest newspaper to read off the date, not realizing it had been sitting there for days. Or, asks what are we doing? or, what can I do? over and over and over again. The warm companionship of years is swamped by the loneliness of the disease, the inner fears of both partners, the stress of carrying on everyday activities, which on good days are nearly effortless.
In mid-stage dementia, J has gotten slower and seems unable to initiate activities that a year or two ago were almost automatic. Some of this is from having given up driving last summer, and not having gotten used to arranging other means of transport before her energy and mental focus became so compromised. She can do activities that I arrange, or take her to, or if someone else calls to say they will drive her, but if left to do it herself, she ends up sitting around much more of the time than even a year ago.
A “good day” can deteriorate on a moment’s notice, but on the other side, a “bad day” can be as quickly left behind – I am getting better at tracking what is happening before these turn-arounds, and helping things get back on track, or not slide so far down.
Public events, like community suppers, can be energizing for us both – J has kept a lot of her social skills, can participate in casual conversation much of the time. But if she goes to an event on her own, in the neighborhood, and I ask who she ate with, or who was there, she cannot tell me. Similarly, if I go out on my own and want to share who I ran into and what they said, she cannot remember who I am talking about. I miss being able to share those things with her.
The names of family members and their places in the family are becoming harder for her to recall. This is always a shock to hear, because sometimes she is very clear on who everyone is. What she had for lunch, even whether she had lunch, is harder to recall.
Driving, bill paying and managing the house have been ceded to me – fortunately, J initiated these changes and I didn’t have to be the heavy about any of it, but it means more work for me and also less for her to keep busy with. We work hard to keep a sense of balance now that it can no longer be maintained the way we used to, by sharing or alternating tasks and duties.
All in all, life is very different for us now, a different world entirely. To some people, who may only see J socially, briefly, and on a “good day”, this may be hard to see. And that’s part of why I am writing this blog with these details – those who don’t live with a person with dementia will be able to get a better picture of what is happening.