I keep forgetting that this disease can go on for a very long time. Over such long periods of time, one’s self-image changes; I can feel it to a tiny degree already. I stopped being a doctor in 1993, but it took me a number of years before I had left the doctor-self behind. And until I did leave it behind, I didn’t realize how much strength it had given me. By three or four or five years from now, this current confident and competent, sense of self will be atrophying. Right now, I can recognize my symptoms and realize that I have Alzheimer’s, but I don’t yet identify myself as demented. That will change: the losses will pile up.
One of the futures that scares me is the rages that sometimes accompany mid-stage Alzheimer’s that scare and puzzle caregivers because they seem so uncharacteristic of the patient. They can be violent and require restraints. I worry about the suffering those rages would inflict on Marja and others and how that would, therefore, isolate me. I’ve always been under the impression that these extreme, unwarranted bursts of anger were simply intrinsic and unpreventable. But an Internet article suggested these rages are frequently from anger that has been repressed during the course of the disease and not from some programmed, organic inevitability. If those with this disease don’t allow themselves to work through their emotional responses, if they have to deny it, if they become confused about what’s happening, and or they are given no permission to express their perfectly normal anger, then the emotional lability that is intrinsic to the disease is eventually much more likely to manifest as rage. But I’m starting in a very different direction, letting friends and family know, trying now to build support for later, talking about it a lot and trying to imagine what future scenarios might be like. And I have a lot of people who are willing to go on the journey with me. Hopefully, that will at least keep my anger manageable.
It does seem, however, that emotional lability is programmed into this disease and the question is how it will manifest itself. Avoiding the rages may be wishful thinking. It’s one more reason, I think, to stay on this path of sharing my experience.