I only remember one time when my father seemed aware of changes in his brain. He called my sister and me and told us a friend had driven him around that morning to run errands. At one point he turned to her and said, “Don’t forget we need to go by the bank.” She said, “We already went to the bank.”
He wanted us to know that made him concerned about his memory, but about a year later, when it was even clearer that his cognitive function was declining, he insisted he was fine and wouldn’t discuss moving closer to family. He lived in California and almost everyone in his family is in Houston, where he’s from. (I live in Chicago.)
The family finally convinced him to sell his house and move to Houston last December when he turned 89. He now lives in an assisted living community and hates it. He doesn’t understand why we’re forcing him to live in this place. He wants to know who sold his house and took his money.
A friend once told me her mother will sometimes be in her own home and still say “Please take me home.” She knows something is off and this isn’t where she belongs. I wonder if changes in her mother’s and my dad’s memories feel like a science fiction movie where an evil or exploitative organization has messed with the brain of the protagonist.
- You remember things that those around you don’t remember.
- You don’t remember things they do.
- People keep trying to tell you things you know aren’t true.
- You struggle hard to get back to the reality you’ve always known and feel furious with those who keep blocking you.
When I hear how hard it is to manage my dad’s moods and personality changes, I try to understand his experience by thinking of the worst science fiction story in which others have suddenly changed the facts on you. My dad doesn’t remember selling his house, so he logically concludes that someone else did, without his permission. When we try to tell him he sold his own house, he’s certain we’re lying. No wonder he keeps trying to re-establish what he knew before.
He tries to leave the assisted living community and has managed to get outside the building a few times. The last time he succeeded in getting completely off the property, and we’re extremely lucky someone saw him before he became seriously hurt. These incidents, combined with his inability to dress himself or do other daily tasks, are why he’s now in memory care. Memory care is sad and joyless, but what can we do? He needs round-the-clock care, so that’s the safest place for him.
My dad is angry much of the time. In photos, even when he’s smiling, I see a lot of sadness in his eyes. He hates his life and he doesn’t understand why he has to stay there and he’s mad at everyone. But his physical health is A-okay! No problems there! So he might still live for several years in hell.
I talk to friends whose family members have dementia. We discuss how likely it is that we’ll develop it and how much we don’t want to live like that. But while someone suffering from a physical disease might have the presence of mind to decide they no longer want to live, someone with dementia probably doesn’t.
In the dementia support groups I’ve been to, I haven’t heard anyone report their family member expressing a desire to die. In the reading I’ve done on dementia so far, experts haven’t mentioned people with dementia wanting to end their lives. I figure even if someone with dementia did say they wanted to end things, no one would take it seriously because their minds can’t be trusted.
When he first moved in, my dad said this place reminded him of Stephen King’s Outlook Hotel.
A friend asks that when she starts forgetting basic things to push her off a pier. But I’m pretty sure that no matter how much we say we’ll want euthanasia, by the time we’re symptomatic, we’ll forget that, or we won’t think it’s time yet because we’re fine, it’s just that everyone else has turned against us.
The English translation of a quote by Mexican revolutionary Emiliano Zapata goes “It is better to die on your feet than to live on your knees.” To which I say, “Sure, until it’s time to live on your knees.” People all over the world live on their knees because when they come face to face with death, they want to live.
So the only way to make absolutely sure I never put my family through what my dad is putting us through, would be to end my life now. I suppose it’s possible I could still be 98% lucid when I see a sudden cognitive decline in myself, like my dad did the day he needed to go to the bank. Maybe that would be the window of time during which I’d need to end my life, before my mind gets worse and I become convinced that I’m fine, but everyone else has turned against me.
No one else in my dad’s family ever developed dementia, so we’re baffled by my dad’s state. My hope lies in this not being genetic, but how likely is that?
My dad hasn’t been in memory care for long. I’m sure he’s looking for an opportunity to escape. Every day my sister and other family members work hard to make the transition to his new life as smooth as possible, but as my dad’s brain keeps changing, it’s a transition that won’t end until his life does.
AI helped me develop this image from a photo of my dad.
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