Does Dementia Change Who You Are?

What is my “self” now that I am changing so drastically? This is the question the Buddhists speak of. Their response? There is no self.

The way I define my “self” is as an intelligent, independent, vigorous, strong, coordinated man with the ability to relate sensitively to others. As I’ve aged, some of that self has gradually been disappearing: I’m no longer so strong, vigorous, or coordinated as I once was. To the extent that I’ve hung on to this old definition of myself, it’s been painful. I’ve had to work at letting go.

And the Alzheimer’s will greatly change other parts of my self-image. I won’t be independent, intelligent, or (most probably) as sensitive to others’ needs. So who am I? Can I acknowledge—and not just intellectually—that my “self” is not a constant entity? It has changed repeatedly throughout my life, especially during my depression. And it will change even more dramatically. That’s going to be more painful than it has to be if I hang on the self as something that I should cling to and keep trying to be that self.

I’ve been thinking about the deeper impact of my memory loss. At our leadership team meeting a week or two ago, I was asked how much we’d given of the amount we’d earlier pledged to a needy family within our community. Since I’m the bookkeeper, it was a reasonable question. Not only did I not know how much was left, however, but I also couldn’t remember paying them anything or even whether we’d pledged ourselves to pay it in the first place. Then I checked my records. Only several months ago, we had a long discussion over several days that I’d initiated. And I hadn’t remembered any of it. My memory has always been bad, but not this bad.

That’s embarrassing, of course, but it also represents a loss of some degree of context for daily life. Full participation in any event or conversation demands knowledge of what’s already happened. As things disappear into my past, I lose that part of me.

I’ve been a writer for many years. Since I write about environmental, political, economic and spiritual issues, a large part of my creativity comes from juxtaposing past events in new ways so that new patterns can emerge. This is the genius of my friend Ray McGovern whose memory seems almost photographic. He knows and can call upon the past to a degree that most people can’t. I certainly can’t and it will get worse. As the disease progresses, obviously, I will have less and less a picture of who I am because I know less and less of my past.

This is a disease of recurrent losses.

I began wondering today whether students from college or medical school classes would at some point be interested in talking with me to understand more of the subjective reality of Alzheimer’s. I doubt that the time has come since the objective changes are not yet obvious to others. (For me those subjective changes seem immense, but I wonder at the value of discussing those yet.) On the other hand, if I wait too long, I won’t have the capacity to speak meaningfully at al

An author and former physician, Dr. David Hilfiker was diagnosed in 2012 with a progressive mild cognitive impairment. His doctor thought it was Alzheimer's but additional testing proved this initial diagnosis to be wrong. Now David must learn how to come to terms with the reality of worsening cognitive issues that appear to have no cause.

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