Does Dementia Change Who You Are?

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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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11 Comments

I believe your exercise in metacognition will be your strongest coping skill as you continue on your path. Your mention of context is so important, and how, without it, understanding and memory cannot flourish.

However, I do believe the self exists. Hope brings up an excellent point - to what degree does Alzheimer's change personality? I think the answer lies in a holistic view of the person - body, mind and spirit/genetics and environment. My mother is also 92 and her family doctor has attributed her symptoms to Alzheimer's. I think with any brain disease it is so important to separate the physical roots and manifestations of the disease from the personality. If we look at the psychology definition of personality, it is essentially a system of beliefs, values and responses to external events. So, to me, your personality determines how you will respond to illness. Although environmental factors and personal experiences can change our world view and belief system, I believe that some there is an disposition and pattern of responses. So, as in Hope's case, her mother's response to loss of control was always anger. Her attitude and relationship with her daughter existed years ago, long before the Alzheimer's tool hold. The disease just exacerbated the anger and emotionally abusive tendencies. The same holds true for my mother - she has harboured a lot of anger all her life and always needed to be in control, even though she complained about how unfair it was that she was burdened with so much responsibility. Life events left her feeling bitter. The Alzheimer's didn't change her personality; it just brought out the worst in it.
My mom is 92 and she has dementia, I have been taking care of her finances for her for the past 2 years, I can't reason with her at all, she thinks I have her money, well her money is in her bank, I don't have it, she wants her checkbook, that's all she can think about, should I give it to her?
If not for this site, I would be traumatized by what my mom is going through. Many thanks.