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Saturday, July 2, 2011


"What's my name?" has become my fairly constant refrain the last couple of days.  It started two nights ago at the end of a good movie (I won't disclose the title for fear of ruining it for others) where the main character is afflicted with Alzheimer's disease and cannot even manage to figure out what to do with his fork. Though I had been enthralled by this excellent new film, Michael was distracted throughout, concentrating more on making pen squiggles on my bare legs, a favourite activity of late and not altogether unpleasant (except when the ink refuses to flow so Michael then works hard on my tender skin to get it going). At the end I dissolved into tears, the situation in the movie being all too familiar. And maybe a little bit from the pain of the pen nib.

He must have been paying some attention because when I tucked him into bed for the night he felt the need to recite the names of his children. The first two, born well before the onset of any of his Parkinson's symptoms and even longer before the arrival of any of the cognitive decline, were easy to remember, as are all his old memories.  But it took him a few seconds to recall the names of the youngest two. At least he remembered he'd had four.

Then I asked him my name. Blank. Hmmmm. He stared at the ceiling, willing my name to float back into his memory. Nothing.  I waited a minute or two then gave him a hint in the way of another question: "What's your name?"  No trouble there. Michael. And then in the next breath- ah there it is - Claire.

I wasn't terribly disturbed by this.  After all it has happened before. The difference this time was that he had been otherwise untroubled throughout the evening.  In the past when he has forgotten my name, he has been in the throes of some crisis, physical or otherwise, that messes with his grasp on reality and plunges him into delirium where all his brain circuitry gets muddled up.  This was a new development or maybe I had just never asked the question before under these circumstances. Maybe he never knows who I am.

The next morning I quizzed him again.  Another long pause before he could recall my name.  I suggested that he might want to work on that, maybe check the engraving on his wedding ring. It might be important to remember the name of the head nurse, and no, I don't want to kiss you right now.

I don't really mind, I suppose, but it does seem to be a symbol of the all-encompassing nature of this disease.  I sometimes feel as though my whole identity has been sucked into the black pit of Parkinson's, that I only exist in his mind as part of who he is and what his needs are, that whole Adam's rib thing.  I mostly have a pretty good sense of my identity and independence, such as it is, but it has occurred to me that when - if - there is a life beyond Michael and this disease, will I still be able to crawl up out of that deep, dark hole into an existence of Claire or will I have been completely subsumed by all that is Michael?

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