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.
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