Author and retired University of Utah professor Gerda Saunders was diagnosed with dementia in 2010. She writes, movingly and in depth, about her experiences:
Just about every aspect of my university job had involved writing. The program emails, office circulars, meeting reports, letters of recommendation, and other official letters had been quite doable just about up to the time of my retirement—they were relatively short, self-contained pieces. However, longer, research-based documents—which I used to love—had become very, very difficult. As fate would have it, a major responsibility during my 62nd year would be just such a piece of writing: a policy and procedures document creating a new position in our program. The document had to be written in the legal language and style of the university’s Policy and Procedures Manual; it had to include references to applicable university rules; and it had to align with the goals and practices of the various colleges and departments with which our program jointly appointed faculty. Given that this manual runs to hundreds of pages and that my short-term memory already seemed to barely function, I had to contend with the fact that a mere switch between screens erased from my mind the item I was researching. Accordingly, I wrote down, in longhand, what information I needed before switching screens. Once I had electronically copied the answer, I used the same process in reverse, jotting down keywords so that I would know what to do with the information once I got back to the draft screen. And so on for the bulk of the academic year. Work, for me, had become unconscionably time-consuming and stress-provoking.
After thinking about my retirement writing projects for a month or two, I decided against revising my books-in-progress. I instead started writing an essay about the changes with which I am struggling as the result of my developing dementia. Then I wrote more. Could I possibly keep writing well enough and long enough for the accumulating essays to become the chapters of a book?
I’ve been reading this in hunks all day long. I feel like I need to take breaks, and seek out profoundly stupid and trivial stuff to recover from the motional heft of this essay. Anything with the word “Kardashian” in it will do.
I don’t fear losing a limb or one of my senses. I don’t even particularly fear terminal illness, such as cancer. But the idea of my brain slowly chipping away and breaking apart like a ball of ice rolling down a hill, leaving behind a healthy body that lives on for decades, is properly horrifying.