Sunday, May 01, 2016

"Fraying at the Edges", a New York Times special section by N. R. Kleinfeld

This strong piece of journalism is in today's New York Times.  It details the beginnings of Alzheimer's in a 69 year old career minded woman of some means who lives in New York.  It follows her inexorable decline over three years.  To those who have watched loved ones or friends go down this trail, much of this will be familiar.  To my knowledge rarely has it all been written as part of one piece focused on one person with this amount of clarity and detail.  Even as the piece ends the subject is still a functioning person, dealing with her limitations, very aware of them, and in her own way studying her own illness with the help of her husband and Alzheimer's support groups and programs.

What was seen from this perspective was the path that my mother followed in her final five years, and I have never understood better what she was going through.  The parallels are many.  When visiting my parents in Virginia during her decline, I would at times invite friends over to the house for dinner, but alert them to the fact that my mother had Alzheimer's.  My mother would know their names, ask about their families, say all the right things, and the second that I would walk out of the front door with friends to keep talking as they walked to their cars they would say, "your mother seems exactly the same.  She could not have Alzheimer's."

The subject of this article initially was looked at in the same way.  My mother's natural good manners and a long time practice of deferring the spotlight masked the fact that she could no longer cook, other than her morning toast, and that her driving was limited to places she knew exceedingly well - the library, her doctor, the main grocery store, and a few other places.  The article was all so familiar. Even so the article gave me insight into how she was managing to cope, and hide what was really going on with her.  She loved to read, and I have always wondered what she was really retaining as she sat in the living room, away from the blaring television in the den, in her favorite chair with a book or The New Yorker.

The answer seems to be that linear stories and articles can entertain and be retained for a some time, but anything more complex does not work well.  That makes sense, and it was gratifying to finally feel like she wasn't silently sitting there pretending to read, or anxiously waiting.  During one of my last visits when she was truly "with it" but definitely into the middle innings of the disease, I took her to some concerts, rock and country bands, outside at a local park.  It was a casual not too crowded affair, free music sponsored by the town.  She was a musician and loved seeing any type of music anywhere, always had.  So she fit right in at the park, enjoying the music and people as we had a chance meeting with some long time acquaintances.  I started to step away with a friend to get a beer at nearby stand and she beckoned me back saying "I want one too".  Of course she did, she always had a beer at any even like this, from Jazzfest to Danville, and at 84 years old she deserved one.

Today another family member has Lewy Body dementia, and my layman's description of that disease is that it is a combination of Parkinson's and Alzheimer's, that has a few other unpredictable side effects. It seems to arrive and settle in much more rapidly than Alzheimer's and the time frame between diagnosis and the end of reading, driving, and cooking is short.  Nevertheless, the Alzheimer's characteristics described in the article are still relevant.  The ability of the afflicted to live with awareness in the present may be the same, and that can be reassuring.

As one can see from the reaction here, this article will likely trigger thoughts by many readers depending on their experiences with this incurable disease.


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