The little box with the DNA swab for my Alzheimer’s bad gene test came in the mail yesterday. The nice people at the Alzheimer’s Prevention Registry that coordinates research on Alzheimer’s sent it to me. The deal is they don’t tell me if I have the bad gene unless I volunteer for research in which having a bad gene is germane. So I could know at some point if I have a hugely increased risk of Alzheimer’s. If I want to know, that is.
Signing up seemed like a community-minded thing to do, a way to contribute to the knowledge base. I am real keen on a big knowledge base.
My mother and sister-in-law died of Alzheimer’s Disease. How it works, how it all goes down, as we used to say, I know about that. And there’s nothing about having Alzheimer’s Disease that is noble or triumphant. It’s loss, loss, loss. Alzheimer’s left my mother limp in the bathtub with my father unable to lift her. He had to call the fire department to rescue his own wife from the bathtub. She’d lost the know-how, forgotten how to move her own body. And he’d lost his strength. Loss. Losing.
So naturally I have a fair amount of dread about the possibility of having Alzheimer’s Disease myself.
I told my husband about the testing kit while we were driving to the grocery store, including the part where I could possibly learn if I have the awful APOE-e4 gene. Having this gene increases risk but it’s not an absolute predictor. You could have the gene and be fine forever. Or not. It’s the ‘or not’ that spurs all the weeping.
“What would you do differently if you found out you had the bad gene?”
I didn’t have an answer.
Hit the road? Visit all the world’s great truck stops? Write all day every day until I become wordless? Walk the beach? Pace the hallway? Bind myself up? Let myself go? Leave a note? Or not?
I don’t know.
I’m not sure my mother knew she had Alzheimer’s Disease. I don’t think my father ever told her. He just carefully shrank her life. When it was time to renew her driver’s license, he convinced her she would have to retake the written driver’s test. He got a copy of the manual and sat down with her every night to review the rules of the road and memorize all the signs. Stop, Yield, Train Crossing. She soon lost interest, as he knew she would, and the notion of a driver’s license evaporated. He never had to say no to her, never had to tell her why. She didn’t care.
She never saw it coming. Maybe that was wise. I don’t know.
Maybe my mother, unaware and uninformed as she was, had the right idea.
She just lived her life until it wasn’t there anymore.