Two years ago I left New York City and moved in with my parents when my father was diagnosed. I was finishing my dissertation for the doctoral program in the English department at New York University. I am still finishing my dissertation.
This morning I was woken by my father. He was standing in my doorway, quite upset because he had taken his medication without food. Even tired and muzzy, that was odd to me, because he has his morning routine down and generally handles it well on his own. So I said, “Well, you need breakfast,” and stumbled out of bed. He followed me to the kitchen and stood beside the pantry while I fetched the bowls (he always has trouble remembering the right cupboard) so I asked him to get his cereal. He looked and me at said, “The door is closed,” as though it were a deal breaker. No breakfast for you, that door is closed. I was still a bit muzzy-headed, so I just said, “Well, then open it.” And his face lit up with that light bulb every teacher hopes to see as his frustration eased, and with a happy “Oh!” he opened the pantry door and grabbed a box of cereal.
My father has Alzheimer’s disease. There are structural and chemical changes in the brain of Alzheimer’s patients which result in changes in behavior and mental function, one of which is dementia. It’s not just forgetfulness. It’s gradually forgetting that the cereal is in a particular cupboard, that you were looking for cereal, that cereal can be found in cupboards, how to open a cupboard door, and that you can open a cupboard door. It’s physically losing the connection your brain made between the cereal and the cupboard, and not being able to relearn it. It is, at some point, forgetting how to feed yourself cereal. Forgetting why you should be eating. Forgetting the person who is feeding you, and getting confused and scared and angry about why there’s a strange person trying to force you to eat cereal you don’t want.
We’re not there yet, thankfully.
But I watch it progress every day, in silent sorrow that that scared, stressed, confused man is not the resourceful, dependable, wickedly funny man I grew up with. In silent terror that that could be me one day.
I have chosen to pursue a career that depends almost entirely on my mental acuity. I could conduct research without the use of my arms, legs, hearing, speech, or even sight (Three words: graduate student assistant). I could teach with any number of physical handicaps, though it would be challenging. But a disease that kills nerve cells and destroys the connections made in the brain would wipe out any original insights, along with my personality. Never mind forgetting how to write; I could forget how to think. That’s terrifying on more than just a professional level.
Care-giving has already seriously impacted my scholarly work. When I moved away from New York, I thought I would finish writing in the next six months and revise and defend within the year. It’s been two, and I am nowhere near ready to defend.
At first, I postponed my writing because of all the urgent matters that had to be dealt with due to the diagnosis. We needed medical exams done, his retirement paperwork had to be processed, and power of attorney had to be arranged. Then there were all the more personal issues that had to be resolved; I had to figure out how to unsnarl the mess my
parents’ finances had become and make care-giving plans with my brother and sister, since my mother has her own health issues and would need help with our father. Then there was the grieving. We had lost one of my brothers only a few years before, and now we were losing our father, more slowly, but just as thoroughly.
Grief is surprisingly distracting.
When I went back to my latest chapter, I had lost the thread of my argument. I spent time reviewing what I had written, refining my aims, and reorganizing the project. I started writing again. I found that I could not write for more than an hour at a time, if I was lucky. I had a well-appointed home office with a reasonable personal library and access to NYU’s databases and I was getting very little done. There were continual interruptions. My father forgot where he was going or what he was doing, and needed help. My mother got confused and upset by bills she had never handled before and needed me to explain something to her. My sister’s work schedule changed and she really needed me to take my nephew and niece for the day. One of my online students was having trouble with her essay and wanted to consult. Mom got frustrated with Dad and lost her temper, so she needed a break. Another student was disputing a grade and I needed to craft a polite email indicating that choosing to get married in the middle of the term and go on honeymoon was not an acceptable reason for late work. None of these are insurmountable obstacles, but together they and their comrades made writing more than half a page at a time a rare event. I became embarrassed by how little I’d written in the last month, three months, six months, year. That in itself became a deterrent to writing, and I found myself putting more time into my teaching, where at least I saw swift results.
I hit the two year mark last month. I made arrangements with my sister and took off on a roadtrip to visit some friends and clear my head. I saw the Grand Canyon and reminded myself that I had personal and professional goals of my own, and that they didn’t have to be entirely subsumed by parental needs, no matter how important family is.
So I am recommitting myself to finishing my degree. I will complete and defend my dissertation this academic year. I will track my writing and keep myself accountable for progress. I will maintain contact with my advisers. And I will make this happen, because I want it.
Because this door is not closed.