When Your Father Falls Apart
WHY YOU SHOULD CARE
Because sometimes curveballs are the only ones we get.
By Kevin Grant
Alzheimer’s disease is a slow death in the truest sense of the word. It is watching a person slowly unravel like a ball of yarn, each day with less of them there, losing memories and skills in the exact opposite order in which they were learned or mastered: first, names and faces, then locations and the ability to drive a car, then perhaps knowing how to dress correctly or tie their shoes. Language becomes a struggle.
“The words see me coming and they run away,” my father said, ironically eloquent, voicing his frustration with the few words that hadn’t darted out of reach. It is like watching someone rapidly rewind into infancy, decades of experience and knowledge eroding over the course of a final 10 years or so.
If I had to guess when my dad became symptomatic, I would say I was about 12 or 13 and he was 52 or 53 years old. After years of spotty employment, he had been hired as the junior high art teacher a couple towns over from us. With the start of each school year, he began dropping a lot of weight, suffering from a general undefined anxiety. Each summer he would recover, only to have it return worse than ever in the fall. He could be moody and irritable in the best of times, but now it was ratcheted up to new levels of intensity, and it seemed like I was often bearing the brunt of his foul temper.
… [H]e had decided I was not his son but hired help, a guy named “Ken” who came to take care of the house and make his meals. “That Ken is a great cook” …
After lots of testing and a parade of bewildered medical professionals, he was diagnosed with early-onset Alzheimer’s at 58. He had been unknowingly teaching the same lessons day after day in school, and the coping skills he had been using to manage to get his job done had begun to collapse under the disease’s progression. His junior high students, smelling blood in the water, made life in the classroom hell, naturally — that was the cause of his yearly stress-related weight loss and anxiety. As for myself, I was the same age as his students during those initial years, so he was unintentionally taking his emotions out on me at home. Fun times all around.
He retired with disability. For the next six years, we cared for him at home to the best of our abilities. I came home from college and my sister went off to college. I would stay with him while my mom went to work during the day, generally just keeping an eye on him and making him lunch. When my mom came home in the afternoon, she would take over and I would head off to my job in the kitchen at the local country club.
Soon he had decided I was not his son but hired help, a guy named “Ken” who came to take care of the house and make his meals. “That Ken is a great cook,” he would tell my mother. “He has a real knack for seasoning!”
He would occasionally take out family photo albums and point out old pictures of me. “That’s my son right there in the blue shirt,” he would say to me. “He can’t get his life together.”
“OK, Dad. It’s about time for lunch.”
Eventually things became too difficult and dangerous at home. My father was in terrific physical shape, running and playing basketball well into his illness. My mother was driving him home from an appointment one day and at a red light, he jumped out of the car and vanished, returning home hours later as though nothing were wrong.
Another time my mom had taken him to the beach and he went for a jog. After some time had passed, my mother was relieved to see him returning, then watched with horror as he proceeded to sit down next to a strange woman on her blanket and begin rifling through her cooler for a drink. My mom had to run over and try to defuse the situation as the woman screamed. These are the sorts of things that can be extra problematic when a person doesn’t appear sick or old enough to have dementia.
We placed him in a home when it became impossible to safely care for him on our own. His paranoia convinced him we were plotting against him — he claimed he had called the police to have us arrested. Things had become scary and no longer sustainable. He would pace the house all night, depriving my mother of desperately needed sleep. And it had been years since he had known who I was.
When he entered the nursing home, he was under the impression that they had hired him, and he often made the rounds, dispensing life advice and motivational platitudes to staff and residents alike. “Don’t be frustrated, don’t get upset. Just put your head down and do the best with what you’ve got.”
“Any job is a job worth doing well!”
“Nothing is a race — not even a race!”
This was unfortunately interspersed with moments of deep confusion and terror. There is a tremendous amount of suffering involved in slowly watching yourself dissolve.
My father has been dead for 15 years now. He lived for 12 years after his diagnosis, and I would guess at least 17 years since his first observable symptoms. To put that into perspective, for the first 13 years of my life my dad was healthy. For the next 17 years he was sick, with less of him existing with each passing day. For my entire adult life he could not recognize me as his son. Whenever I dream about him, he is sick in my dreams — that is how entangled with the illness my memories of him are.
Still, he returns to me now in unexpected ways. The older I get, the more I feel I know a person who became unknowable to me while he was living. Getting older, having a family, taking care of the house — these things arrive to me through the filter of who my father was and how he suffered.
“This is just my thing; some people have cancer, or a car accident. This is mine.”
My 5-year-old son asks a lot of questions about him. “Can we go to where your Dada is buried? We can dig him up with an excavator and give him some soup!”
In some ways, I feel like I do that already.
- Kevin Grant, OZY Author Contact Kevin Grant