Perhaps it goes without saying, but dealing with a terminal illness like dementia often feels desperately sad — a steady march toward an inevitable demise. It’s easy to feel sorry for yourself, to focus on everything you’re losing. If you’re not careful, it will consume you. Finding a way to revel in the moments of joy or weirdness or humor, however small, was a matter of survival.
And there were moments when the silliness gave way to something almost sacred, a kind of wordless filial language. It allowed me to reach across the chasm of his illness and grab hold of something tangible and familiar.
Dementia is a degenerative disease which means, essentially, that it works by eroding the brain. This is an oversimplification, but in general the atrophy begins with the inhibitions and control mechanisms. Then it moves deeper, into the hippocampus and frontal lobe, where it starts to eat away at language and memory: dates, faces, experiences, words. Some things inexplicably hold on longer than others. But eventually, it gets all the way to the brainstem. It is at this stage that the body forgets how to perform even the most basic functions: how to chew, how to swallow, how to breathe. This process of erosion happens agonizingly slowly, and still, somehow, far too fast.
My father died in March of 2015. I was 18 years old.
A few months earlier, my sisters and I brought him home to visit for the day. We spent the afternoon at the beach, where he napped in the sand. Later that night, after dinner, and after we had blown clean through the care center’s curfew, I volunteered to drive him back. He would sometimes get nervous in the car, so I put on his favorite album, which — like all dads everywhere — was Paul Simon’s “Graceland.” How many times had I heard that opening accordion riff float out the window of his studio?
It was late August, and the air was warm. I thought he might fall asleep in the front seat, but when “Diamonds on the Soles of Her Shoes” came on, he started humming, and then, slowly, he began to sing. I hadn’t heard him say more than a word or two in many months, but his voice sounded clear and sure. He knew most of the words, and he howled happily through the ones he didn’t.
