There is loss and grief when you have a parent living with dementia. I wrote this in a writing group recently, in response to a prompt. Writing is a beautiful way to process grief. A vulnerable share. Perhaps you will do the same. X. B.
Hey Bar, it’s Neil.
I don’t call my father Neil. He is Dad, Daddy or Grampsy mostly, as affectionately known by the grandkids for years and all who know that throughout the town. Until his driving was revoked and the car sold, he would spin around town with plates emblazoned with his trusty moniker. They now sit proudly on his fireplace mantel. Even he was delighted in the law breaking idea of never returning them to the DMV.
It’s Neil. This is his dementia talking.
He rarely leaves the confines of his one-bedroom condo, or the surrounding block. His habitual memory is so deeply grooved in a decade’s old routine, we dare not remove this melodic record from its sleeve.
He wakes, he swings open the familiar back fence of the enclave and walks to Lange’s Deli. This is his Cheers. They know his name. That his beloved rescue Max has died. (Though he often reminds them). That he will want both The Post and The Daily News. He used to get a toasted bagel too. He has grown accustomed to a newly developed sweet tooth. The donuts with the most sprinkles seem to call to him. They must think all the grandkids are coming for breakfast. His caretaker tells them to stop indulging them in multiples. There is a childlike spirit and joy to what is left of the man I know. I hang on to that fiercely. Tight like his best hugs. And advice. That is the new outside, simple and pared down. But I guess that is familiar too, when you take the rest down to his Ohio roots.
He tells me how quickly they remove the snow on the sidewalks. Goes on about the weather. Unless it is jotted on a calendar we keep for him on the dining table, it is not in his purview. Not happening.
He calls his caretakers “The Patchers”, as they switch his daily medication from place to place on his back. A small 1x1 medicine doused square of hope to slow the hideous progression of the disease. He regales the Patchers with charm. On walks, he shows them the tallest pine tree, the house on the block with the wrap around porch that he admires most. At the library, he takes in the children’s story time. I have noticed, that there is something familiar to him that he sees in kids. He takes them in with rapt attention. Does he feel their equal? I am not sure of the connection, but it is stunning and simple all at once.
I am not certain where Neil is most days. Sometimes I dread calling. My brilliant advertising Mad Man of a Dad is no longer. His strong but quiet advice. A great ear and dazzling story teller. I can hear the ice cubes clinking in a cocktail back when he held the room. He is still funny as fuck. Thank God. The Patchers think so too.
I tell him stories about Neil. The one about taking a friend’s son to soccer games after she lost her husband on 9-11 and could not be at two games at the same time. How we dedicated a bench to Alan at his favorite diner, and how he used to place flowers there in memorial on that day. He would always send me a photo. “Boy, that sure sounds like something I would do, I wish I remembered.” Humbled by his own heart and actions. I take a mental note to keep on telling him these stories. This is my salve. How I keep him alive, though he is before me smiling and breathing and being.
When asked about hitting up a movie, or something that Neil used to really enjoy, he often declines. The inside gets bigger and more familiar as the outside eases in. I wish so much more for him. But, I am learning lessons in all of this. I too admire the way the fruit is so artfully stacked at Whole Foods now. He pointed it out on our visit there. You are so right Dad. We are in no rush to check things off the list. We are just inside.
