Wednesday, July 15, 2009
"Alzheimer’s is a disease of progressive memory loss and cognitive decline, it eats away at the mind and spirit and being of the sufferer. I knew that although he denied even having it, he was ashamed and angry at this illness. Like an illiterate adult who has managed to get by for forty years without being found out, he had developed elaborate procedures and coping mechanisms, precise checks and balances that allowed him to seem relatively normal and high functioning. He carried with him at all times a little spiral notebook: every time we had a conversation, or went somewhere, he surreptitiously took out the book and made a note about what has just happened. There were stacks and stacks of these notebooks hidden in his bureau, attesting to the fear of what was happening to him. They were written in a kind of code; meals were noted, with specifics about what exactly was eaten. The mood or dress of a companion was marked down, as well as details about the car and the eventual destination. Weather and surrounding conditions were noted tersely. Although I occasionally snuck a secret peek to get a sense of his state of mind, I never once asked him about the books. I always felt the necessity of respecting his privacy, respecting the ruse that the notebooks represented, that he could remember things just fine, that his mind was intact. The books were an attempt to control, in some small way, how his mind was slipping away. It had also become more and more difficult for him to communicate words and ideas. Aphasia, or word confusion, is common in Alzheimer’s sufferers. In some ways he must have been trapped inside his head. In the end, these notebooks will be all I have of him; a written representation of the thing we all take for granted every day, our mind and memory."