The Bearable Lightness of Dementia

There’s a woman in my Mom’s nursing home, we will call her Flora, who has Alzheimers, or something similar. It used to be that she roamed the halls endlessly and would enter other patients’ rooms and go through their things, thinking it was her room. Flora only knows Spanish and thinks that she is back in El Salvador. She told me once that my Mom should learn Spanish, “if she’s going to live in this country [El Salvador].” Mom’s first roommate there was from Columbia, also only knew Spanish, and she told me, “Now that your mother is with me, I will teach her Spanish.” Unfortunately, that nice lady passed away a few weeks later.

But back to Flora. Usually when I come in Flora says hello and tells me how fat I am (¡gracias!). But now, Flora just sits in a chair cooing over a baby doll. She insists that the doll is her baby, and she said, “She follows me everywhere. If I go outside, she cries, ‘Mama, ¡no vas!’ and I stay.”
So Flora now obsesses on her cute little baby, exclaiming ¡Mamacita! to her. When I met Flora’s daughter and granddaughter, they told me that Flora used to take care of the granddaughter. She thinks the granddaughter is her daughter, and wanted to know where the baby is. She thinks her daughter is some nice person who comes along now and then.

My own mother is immobile, but it doesn’t matter, because in her head, she’s been out walking today, and she spoke to her mother on the phone a few times, and she asks me, “How’s Mama?”

Mama died 60 years ago, that’s how she is. But Mom has forgotten all of that. She’s forgotten that she’s lived 20 plus years longer than her mother did, and all those visits to the cemetery. Mama is someone she talks to on the phone. There is no phone in her room.

So I have had to create a posthumous relationship with the grandmother I don’t know, using the knowledge I have of a grandmother who was a bit different than the one I did know. She was quiter and less animated, but could get her message across. Mom wants to know where Mama is, and I tell her that I live with Mama and Papa now, and that Mama stayed home with a head cold and didn’t want her to give it to Mom. When the visit with Mom gets to be too much, because we are on the endless loop of “I want coffee,” I can use Mama to get out sooner. I tell Mom that Mama needs me back home. I tell her that I pretty much do whatever Mama tells me to do. One Friday I was able to use the excuse of shabbos approaching, and how angry Papa might get if I was late.

This is exactly the sort of life Mom never would have wanted, but she is actually not unhappy, and not the bad patient I expected she would be. If you asked Mom ten years ago, she would have preferred for the stroke to have killed her.
Living in a huge self-made delusion seems so preferable to being completely aware of how horrible your situation is. Eric’s cousin is barely able to walk but is completely with it and hates the worsening of her own existence.

Eric once said that perhaps there’s a reason why Mom is still with us like this. It’s possible that this continued quasi-existence is preparing us for the horrible possibilities of the future. At least I still have a mother who knows me and appreciates me. She is actually much nicer to me now than she was previously. I hate words like “closure,” but at least I have this last part of her life as a kinder memory than the previous one. And I also have a strange imaginary relationship with my dead grandparents, via Mom’s delusion.

Many older people go back to their roots, to the memories imprinted on their earliest existence. Mom cannot remember the stroke or where she actually is, but she knows where the Loews Pitkin is in relation to her first home. She remembers Uncle Slotnick farming in his backyard, visible from her bedroom window. It’s got to be some comfort that the earliest memories are good and comforting ones. My own grandmother often asked how her own mother and sisters were.

These things remind us we need to provide good things to the young ones in our lives–they might need that soft landing place one day many decades from now. Being there for them now means being there for them long after we are gone.

Mom remembers me, at least. For now.

One comment.

  1. Great description of the constant drifting from “reality” to the “time travel” that often happens with dementia.I sort of enjoyed the freedom of it if I pretended I was in a play. It does get tiring and breaks are important. Thanks for sharing this Seth.

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