My Mom Died of Dementia. Here's What Scares Me Most.

Everyone experiences occasional memory lapses. What did I mean to pick up at the grocery store? That person said hi to me — what is their name again? My favorite song when I was a senior in high school — what was it?

Yes, everyone forgets now and again. But not everyone's mother died of dementia. Mine did. She took her last breath on September 3, 2023. And something I can't forget is that dementia is hereditary.

Will I suffer the same fate?

My mother was initially diagnosed with dementia more than a decade before her death. She kept it secret, but this didn't stop my family members and me from suspecting that something was terribly wrong. She stopped making us laugh and started causing us to cry. She grew more caustic, more deliberately hurtful. She said things that made no sense. She left four-minute-long messages on my voicemail, most of which had to do with the wrongdoings of Kim Kardashian. 

Sadly, this fit into what I knew of my mother. She was never the least turbulent person in the room, never the most easygoing person by a long shot. There was a period when I talked to her on the phone daily. My husband convinced me to stop that, "unless you enjoy being in the fetal position."

I didn't. I pulled back. I wasn't there for her as she was sliding down that hill, as dementia consumed her bit by bit. Despite my growing sense that something wasn't right, I consumed myself with the responsibilities that life loves to hand you. I pushed her plight to the back of my mind, managing even to forget about it now and again.

Then came the text message. Mom fell. She's been taken to the hospital.

Life changed — not so much for me as my youngest brother, who from that day on would hold the responsibility of caring for my mother, move into her house and live there until after the day she died — but it changed for me all the same.

I started visiting her in San Diego on a regular basis, at least once every two months. At first she was in a rehabilitation facility. She couldn't walk that well. She was wearing a diaper. And still I was in such denial. She was going to get better. She was going to walk again. She would learn to care properly for herself once more. She would be the mother I once knew — so very far from perfect, but not what she seemed to be becoming.

Then came That Visit. I walked into her townhome and knew something was wrong, so very wrong. She sat slumped in a wheelchair. When did that become part of the household? Her hair, always cut and Clairoled, hung limp and gray. Can she not do that anymore? Her eyes, perennially sharp to the point of being unnerving, were glazed and unfocused. What the hell is going on?

As if I didn't know. But I'd been in denial. She's faking it. She plays games like that. But who would want to fake this? Who would want to be seen in this condition by anyone, least of all one's own children? There was no trickery here, only a woman who was in worse than gradual decline — and in need of caretaking.

I thought about my own 8-year-old son. What would happen if one day he were called upon to care for me or my husband? Asked to give up so much of his independent life, as my younger brother was in the name of taking care of our mother? Charged with transportation, personal care, feeding? Responsible for taking care of our bills, our accounts, our mortgage?

Dear God.

I turn 50 this year. I cannot imagine not being independent, relying on others to perform the most personal services for me. I cannot fathom giving over my freedom to others.

But what if life doesn't give me a choice?

Every trip after That Visit showed more and more of an evolution — my mother progressing toward death. When she became bed-bound, it was clear: she was not getting out of this. None of us does.

When I ask my husband how he wants to die, he says: "At the age of 110. In bed. Preferably with you." I laugh, and I also know that may well not be in the cards. It may be that one of us goes before the other, and in a way we might not have chosen.

I think about making a bargain with the Powers that Be up in whatever Heaven might exist. Leave me my mind. That's all I ask.

I have no way of knowing if they will hear me, if they will grant my wish. I can only live my life in line with my values today, tomorrow, and for as long as I have left.

That's it. That's all. That's everything.

Allison Landa is a Berkeley, CA-based writer of memoir and fiction. She is the author of BEARDED LADY (Woodhall Press, 2022) and can be found online at allisonlanda.com. 


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