When I was around 10 years old, my father started hiding bananas in our house.
We found them in the dishwasher, in the junk drawer, behind the potted plants. I once came upon an entire bunch hanging from the shower head. Too often, he hid them so well — tucked beneath a pile of blankets in a rarely opened closet, say — that we found them only when they started to smell. When confronted, Dad denied it, but we knew it was him.
On their own, the bananas might have been amusing. Like a surrealist art project. But they were part of a more troubling pattern.
He had started acting strange in other ways, too: making jokes that no one could understand and forgetting things, like where he’d parked or the name of the owner of the diner where he’d been a regular for years.
A wood sculptor, he had always been obsessive, almost rabid, about his work. He was up at 5 or 6 every morning and spent every moment he could in his studio, pausing only to eat, which was done standing up over the kitchen sink. But now it was as if someone had yanked out his batteries.
He took to spending large parts of each day sitting in his car in the driveway, poring over the newspaper, circling seemingly random words and scribbling notes that said things like “Welcome to the information age” and “There’s only one way to find out!” When we asked him what he was doing, he brushed us off.
My mother took him to the doctor. They ran some tests and said he was fine, but he was not fine. He was agitated all the time. Both listless and restless. He would wander from room to room as though he was looking for something. Or else he’d sit and stare blankly at some point in the middle distance, disappearing into himself for whole afternoons.
It was many disorienting months, and many doctors’ appointments later that we learned a name for what was wrong. But eventually he was diagnosed with a rare form of early-onset dementia. He was in his mid-60s when it started.
Dementia is a bizarre and brutal disease. It strips a person down piece by piece. They lose their confidence. Their clarity. Their personality warps until they become unrecognizable.
The doctors encouraged us to keep track of my father’s symptoms, a task I, at 12, took on with journalistic seriousness. I got a notebook and began writing down everything he did:
In a way, the notebook became a catalog of losses. Every entry felt like another blow, and I took them all personally. The first time he struggled to remember my name, I didn’t speak to him for a week. It wasn’t his fault, I knew. But, still, I was heartbroken.
For as long as I could remember, my father and I had been inseparable. When I was 5, he took me to work with him so often that my kindergarten threatened to hold me back.
How to describe him? He was one of those annoyingly multitalented types — a businessman, an artist, a winemaker, a sailor and skier and distance swimmer. As a young man, he’d traveled across Europe on a motorcycle and spent summers fighting wildfires in Colorado. He knew how to fly a plane and rebuild an engine and frame a house. He made monumental sculptures — some more than 50 feet tall — that he erected with giant machines he operated himself. He was, in short, almost freakishly capable. There was nothing he could not do, and suddenly he wasn’t able to work the microwave.
As his illness progressed, my family refashioned itself around him. We all dealt with the loss in different ways, but I felt uniquely ill-equipped for the challenge. My mother exhibited a grace and resolve that struck me as stunning at the time, but which, in hindsight, was something closer to mind-boggling. My three older sisters were light years more mature about the whole business than I was. Through their mourning, they related to our father with a gentleness and simple good nature that felt inaccessible to me.
Instead, I retreated into an angry grief. I started to avoid him in the house. I would barely look at him during meals, and whenever he said something weird or confused — which was all the time — I would recoil. It was all too sad, too much.
But the thing about grief is that it’s exhausting. And dementia is nothing if not a test of endurance. People can live with the illness for years, for decades. And over time it wears you down.
It’s hard for me to stick a pin in the moment when my feelings toward him started to shift. Perhaps I simply grew out of some of my preadolescent surliness. But over time, we got closer.
In his illness, my father existed in an eternal present. Uncertain about the past, and unable to envision the future, he was only fully able to occupy the moment he was in. And I learned ways of occupying it with him. We would walk our family dog, Blue, together after school. I’d sit next to him at the kitchen table while I did my homework and he made little sculptures out of rubber bands and paper clips. Sometimes I’d talk to him about my day, or tell him something I’d learned in school. Sometimes we’d just sit in companionable silence.
On rare nights when we had the house to ourselves, I would make two bowls of Cheerios — one for each of us — and we would watch “South Park” together. He wouldn’t really watch, but he liked to mimic the characters’ raspy voices. He was actually pretty good at it.
Over time, the notebook took on a new significance. No longer concerned with tracking his decline, I used it simply to record, for myself, all the interesting things he did so I wouldn’t forget them:
He would frequently say mysterious and profound-sounding things. Once, while looking at a photograph of my sisters as children: “These little squeaks look a lot like the people I used to be.” After surveying the contents of the medicine cabinet: “some very serious equipment.” He described a bite of oatmeal as “a galaxy of wow” and a strawberry as “the flavor of being born.”
For about a year, he had an intense fixation on the word “supercalifragilisticexpialidocious” and would repeat it — I promise I’m not exaggerating — hundreds of times a day. We begged him to stop. We offered handsome rewards and threatened heinous acts of violence. But once he got going, he would enter a kind of trance, and nothing could keep him from repeating the word over and over and over, clearly relishing the rhythm it produced. This was funny at first, then tiresome, then maddening, and then, finally, when we had all grown delirious with frustration, it became funny again. (To this day, whenever anyone in my family hears this word, we groan.)
The experience of living with my father in these years ranged from tragic to tragicomic to absurdist, often within the span of a few minutes. And I found that appreciating the humor in his illness made things feel, if only briefly, less hopeless. It didn’t take away our grief, but it made it more endurable.
That’s another thing about dementia: It is, in certain moments, incredibly funny.
I know, I know. It’s not. But also? It is.
Try not to laugh when your father walks into the living room wearing a purple velvet party dress and a pair of swim fins on his feet. Or when he tells your math teacher, without a trace of malice, that he has “an evil face.” Or when — having recently had his car keys taken away — he “drives” the lawn mower three miles into town to get a cheeseburger and three miles back.
My mother cared for my father at home for years. She bathed and fed him. She brushed his teeth. On good days, this was an arduous job. But as his condition worsened, it became untenable. If she took her eyes off him for a moment, he would wander off, and she would have to go out looking for him, sometimes with the help of neighbors or the police.
One day, while she was helping him out of the bathtub, he suddenly let go of her arm, and she fell backward. It was just an accident; he was not aggressive. But she needed stitches.
When I was 16, he moved into a long-term care facility 20 minutes from our house. It was a loud, gray place. There were alarms on the doors and bars on the windows and the other people there were sicker than he was — or at least seemed it. There was a patient who never stopped running. I mean to say that he jogged up and down the hospital corridors day and night. He looked like an ultramarathoner. Others were utterly catatonic.
It was unimaginable that my father would live in such a place. But by that point, we’d gotten used to the unimaginable.
My mom visited my father every day. My sisters brought scrubs and lotions and gave him “spa treatments.” They put cucumber slices on his eyes. I played him YouTube videos of symphonies and helped him make tiny sculptures out of the tinfoil lids of the pudding cups he was served at meals. One afternoon, I taught him to shoot spitballs, which, much to his nurses’ dismay, he got quite good at.
On days when he was especially hard to reach, I would resort to physical comedy. Slapstick was effective. I would twirl around and then fall to the ground in a melodramatic swoon, as if stricken. This move was a favorite of his, and it usually got a chuckle. At the very least, there would be the briefest flash of something behind his eyes. I lived for that flash.
These are not, I realize, usual things for a teenager to do with her father. From the outside, it may sound depressing. And, of course, in a way, it was. But in another way it also wasn’t. Here we were, father and daughter, laughing together.
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.
I knew by then that he wouldn’t live much longer. He wouldn’t see me grow up, or teach me to sail or to drive a stick shift. He wouldn’t walk me down the aisle, or meet my children. There were a thousand things we would never do together, but at that moment none of it mattered. I was driving with my dad, the wind in our hair, singing along to his favorite song.
https://news.google.com/rss/articles/CBMiRmh0dHBzOi8vd3d3Lm55dGltZXMuY29tLzIwMjQvMDYvMTUvb3Bpbmlvbi9mYXRoZXItZGVtZW50aWEtZmFtaWx5Lmh0bWzSAQA?oc=5
2024-06-15 11:00:43Z
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