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If you're new to this blog and want some context for it, read this post from the day I announced my Alzheimer's disease and this post about the day I announced I had lost it. For more info, visit my website with my autobiography and all blog entries in chronological order for easier reading to catch up. There's also a sermon on the spiritual lessons I've learned through this journey through my damaged mind.

Sunday, September 30, 2012


I was with friends on my way back from Salt Lake City and had really looked forward to talk with them about my diagnosis.  I don’t know why I expected more, but their response was little different from that of most others.  They weren’t really able to take the information in or respond to my suffering in a way that was helpful.  They listened attentively, they asked some questions about why I was so sure about the diagnosis, and they shared some of their experience of being with others who had the disease.  In short they did all the things I would probably have done under the circumstances.  But somehow they didn’t feel present to the suffering I feel.

Since I would have responded the same to my friend with the diagnosis, I can’t blame them.  We’re close friends.  I suppose like everyone else they were overwhelmed by the news of the diagnosis and needed some time to work with it.  They were the ones who needed the most help, not I.  This disease, I’m coming more and more to understand, is not just about me.  In fact, at this point at least, my suffering is probably less than the suffering of those close to me.  Like everyone else, I suppose, I would have expected to be devastated under these conditions.  But I’m not.  Others are.  At least for now, it’s not about me. 

They are both physicians.  He mentioned that people don’t actually die of their disease but of complications, for instance, pneumonia or severe bed sores.  Those who are in better physical shape at the beginning live longer.  I’m in good physical shape.  I’ll live longer. 

I’m beginning to hear all sorts of stories about people who live a long time Alzheimer’s.  I could easily have ten or more years of the disease (especially since I’ve recognized it as early as I have).  That’s a good long chunk of life!  Jai, my grandson who’s two and a half now, will grow up with me—I imagine—as that vacant old man sleeping on the couch, like my alcoholic grandfather.  Ten-year-old Otto will probably remember who I used to be but still his dominant image of me will be as demented.  I will not spend my last years as the person I have known or as the person I thought I would be. 

I’m facing a collapse of so much of what has given me meaning.  What is it actually going to be like?  I will have to find a way to “live with” this disease.  It’s different from an auto accident, most cancer, and heart attacks we view as killing the “real me.”  But demented is how I will be for the last 20% of my life.  Dementia is my life.  Like the quadriplegic, I have to learn how to live a new life.  Can I discover other possibilities for finding meaning? 

1 comment:

  1. Do you take anything for the disease? Have you tried coconut oil? Cannabis? Both are known to be beneficial.


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