It sounds insane, but that summer of 1996, we hoped a CAT scan would show a brain tumor. You can cut out, medicate, or radiate away a tumor. You can know an outcome, good or bad. This hazy thing called Alzheimer’s: “How long? How to cope? How do you die? How do you live?”
The doctors can’t give definite answers. There’s no standard for length of the disease: progressions vary, symptoms vary. Separating Alzheimer’s from other forms of dementia is tricky. Absolute certainty of diagnosis is impossible: you don’t have a brain tumor, don’t have Parkinson’s, and on through a long list of don’ts until the probability left is Alzheimer’s, but Alzheimer’s can only be verified by a post mortem autopsy.
New techniques are being developed that involve brain waves analysis and biomarkers in which biochemical, structural, and metabolic factors are analyzed and may make diagnosis more certain.
Dan’s CAT scan did not reveal a brain tumor. More tests. A day of written math, comprehension, and language tests. Anger at the intense concentration needed. Finally total exasperation because the answers aren’t retrievable, the questions senseless. Hostility. The testing, after six hours, is called to a halt, and the tests for the next day are canceled. Test results: less than third grade math and general comprehension levels…..Fear and anger.
Dan’s thoughts were full of frustration and confusion.
I do know I can’t sequence numbers, can’t remember a list, can’t remember meetings, changes in plans, faces. I know I fake it. When I call my wife when she is up north, I have her letter in front of me with “yes” or “no” written in next to the most simple questions she has asked. If she presses me for the more precise answers she expects from me, I am evasive. I don’t know the answers. I don’t know why she asks these questions. (I found these letters later along with notes for phone calls to other people detailing exactly what Dan would say. Everywhere I found notes and lists he used to help him get through his days.)
The neurologist confirms the conclusions: Alzheimer’s. “But there are new drug. They won’t cure, but will slow down the process….Maybe in time…you may be lucky and they will find a cure….”
I can read on Dan’s face…. Yes. Surely they will find a cure. This terrible thing can’t happen.
I am thinking the same thing. We needed something to keep us afloat and so grabbed on to hope, defined by Emily Dickinson as “the thing with feathers that perches in the soul.”
Dan agreed to try Cognex (generic Tetricine), a Parke Davis product that was new on the market. The company provided an 800 number and their nurse phoned us once a month to ask how we were doing. Every two weeks we had to go to the medical center where Dan’s blood was drawn to make sure there was no liver damage (a possible side effect). Parke Davis sent information on the drug including a chart that showed a twenty-six week improvement for most recipients of the drug, then decline, and finally a progression no different from those who had not taken the drug. Cognex was later replaced by Aricept (generic Donepezil), a product with a smaller dosage and, therefore, no need for weekly testing, but the effective time was still limited. Six months, I told myself, that we could count on things being stable, and then what was the next possible hope?
Dan was irritable, scared, and unable to plan. He seemed grateful when I made decisions but became angry and irrational when things upset him. His responses confused me. My responses confused him. At night we held each other.
“I’m so scared,” he would tell me. “Me too,” I would tell him. We made love, desperate love, resisting dissolution.
Dan’s medical leave of absence from the college had begun on June 1, 1996. That fall we decided to sell our old house, close out that part of our lives, finish our retirement home, and travel. Do the best we could. If by the next spring Dan was better….what if he was? He could rent an apartment near the college and go back to teaching. We had so much to do while we could. We felt a need to hurry, but to where we weren’t entirely sure.
The house sold, the movers came, and we now were full-time residents of our dreamed of home in the woods. Our lives had new boundaries and new routines evolved. We made the biweekly trips to the local medical clinic for the blood tests. I bought a pill box that had a space for each of Dan’s three pills a day—I still had to remind him to take them. That first year, if I left simple instructions when I substitute taught or covered stories for a local newspaper, Dan was able to fix dinner . I turned down the offer for a full-time writing job, and struggled to exorcise my resentment toward what: Dan, fate, the universe?