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Waxing Existential: My Father, Dementia, and Me

Posted on 14 Sep | 1 comment
Photo by Miyuki Kobayashi
Photo by Miyuki Kobayashi

After surveying the room, my father leaned over the dining table and whispered to my sister and me, “I’m the youngest one here”. Then, he started crooning that lovely song from Rodgers and Hammerstein’s South Pacific, “Younger Than Springtime.”

We had just moved our 88-year-old father into an assisted living facility. I stayed there with him for the first two days to get him settled. Settled is not an accurate word, really. We brought him there and explained to him that this was his new apartment. Actually, we explained it to him at least a dozen times in various ways for days. My father has vascular dementia. His short-term memory is slipping away. At his advanced age, he’s been pretty lucky with his health, and I am grateful for this. Now, as I observe the changes in him, and the gradual decline in his cognitive abilities, I wonder what it’s like for him. I have seen him struggle to remember certain things, asking the same questions over and over again in a hopeful attempt to put the pieces together of what he thinks he should be able to remember. It saddens me, it scares me, and it even angers me. My father doesn’t anger me, although patience is a virtue when you’re answering the same questions over and over again. This disease angers me.

There was an article in The New York Times Magazine by Alex Witchel, entitled “How My Mother Disappeared”. Witchel tells the story of her mother’s gradual cognitive decline. She noticed small things at first, and didn’t pay much attention to them. Then, as her mother’s condition worsened it was impossible to ignore, but hard to accept. The social worker, who worked with the family, referred to the situation with her mother as “ambiguous loss.” This is very much what I am experiencing with my father. He’s there but not there. Witchel lamented:

So at that point, who was my mother? A 77-year-old woman who could no longer remember how many years she had been married or any of her children’s birthdays…She stood in my apartment, where she had visited me for 19 years, and asked me who lived there.

Last fall, my father stayed with us for several weeks. Not a day went by that he didn’t ask me how long I had been living in my house, who did I buy it from, and how are the neighbors? We’ve lived there for 16 years. The ambiguous loss that I am experiencing touches me in many ways. I talk to him daily, and he’s always glad to hear my voice, yet he cannot track my life anymore. He goes through the motions, asks how the family is, how my day was, but I know that he is not remembering my life or the people in it. I miss him being more engaged. I miss talking to him about current events, I miss having him to lean on and cry to. I miss how he used to be. That’s the loss.

Mostly, he’s incredibly good-natured and can still be witty and has a great sense of humor in general. I am thankful for his loving nature and the joy he still finds in being with people, especially his daughters. My father is truly in the present, which I find fascinating and unnerving at the same time. I wonder what he’s thinking and how he experiences his world at this point. Rarely does he realize that he’s forgetful, and when he does, he tries his best to cover it up. One may even think of this state of being as useful, as a way to be mindful and present without an agenda for the future, or baggage from the past. Perhaps this is so at times, but I also see part of his life being taken away.

Existentially, I think dementia brings up many questions. There is meaning in being present, for sure. But is some meaning lost when memory is lost? What happens when you cannot string recent events together? What if there is struggle in trying to remember or make sense of your surroundings and your existence? When my father tells me that he probably won’t stay in this place (assisted living) for very long, and he doesn’t really know why he’s there, and that he’ll probably go home—it’s painful. But is it more painful for me because I still have my short-term memory?

We have a pet fish. One left from several my son acquired when he was in 4th grade. He’s now a high school sophomore. The fish used to be in a tank, swimming with his other cloud fish friends, with a filter and plants. Now he’s in a bowl, alone. He swims around and around the bowl endlessly. I was looking at him the other day and I felt incredibly sad and guilty about his life. I wondered how he could just swim around and around in that confined, depressing bowl. Then, I thought about how old he is, and what a trooper he is. I thought about how wise he might be. Perhaps the bowl is a pond-like meditation chamber. Maybe he’s a Zen fish. Could it be that he’s much more at peace not having to swim in a school? You know how cliquish those fish can be. He’s independent now. Hey, he might be having the time of his life! Who knows? Is it actually harder for me to watch him swimming around, imagining how I would feel—me being me, not the fish—swimming in that bowl?

When I told my father that I had to return to Seattle, he asked me how long I would stay there. I told him that’s where I live now. I could see in his face a pensive look—brow furrowed, mouth turned down, much like my own face when I’m deep in thought. Then, he asked me the same question again. So he kept asking, and I kept answering, and that’s the way it goes with most things.

My father is disappearing, like Witchel’s mother, and I can’t do anything about it. And neither can he. All I can do is meet him where he is, be present, and tell him how much I love him. He knows I do, and I know he loves me. And in that space, nothing is different. Nothing has changed at all.

-- Sibel Golden

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Thank you for sharing that.

Thank you for sharing that.

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