If you asked my 16-year-old self where I thought I’d be in five years, the last scenario I would’ve envisioned was having dinner with dementia patients at a nursing home in the Bronx.
And as my mother’s visitor no less.
Last month my mother moved into a nursing home. This came after years of witnessing the deterioration of her cognitive abilities and changes in her personality, all thanks to life-sucking frontotemporal dementia (FTD).
As the Alzheimer’s Association puts it, “FTD refers to a group of disorders caused by progressive nerve cell loss in the brain’s frontal lobes or its temporal lobes.”
But if you’re a teenager listening to your mom’s neurologist pronounce his diagnosis, what this really means is that your mom is going to lose her ability to speak English (her second language), have trouble forming complete thoughts and sentences, and eventually forget how to do things she loved, like cook and read.
Or at least mine did.
But despite all of her inabilities, when I walked in on her having dinner with the rest of the women that make up the dementia floor of the nursing home, I didn’t think she belonged.
My sweet, loving mother breaking bread with people who seemed like they were straight out of “One Flew Over the Cuckoo’s Nest?” Sorry, not happening.
It wasn’t until I spent three days there bonding with those women that I realized what scared me the most—she did fit in.
As I wandered around the long, narrow hallway of the dementia floor, I observed and eventually befriended the other women.
There was Maura, an Irish lady in her mid-‘70s, who I watched pantomime getting on an invisible plane to god knows where. Maura’s delusions were idealistic. She was always off to some faraway land, telling us she wasn’t sure when she’d return. Maura also had a great sense of humor. When she formally introduced herself to me she said, “The name’s Maura, not Moron.”
There was also Claire, a retired social worker who couldn’t believe she was in the Bronx because all her life she’d lived on the Upper West Side. Claire’s first words to me were, “You don’t look like a geriatric patient.” Claire was on a constant loop that lasted about five to seven minutes before she’d start over again. I sat with her during dinner one evening and, for an hour, we talked about how she was “spoiled” all of her adult life because she walked through Central Park to get to work.
The sweetest of all was Ms. Patterson. Her wisdom came in spurts, like she was teetering between lucidity and delusion. Reflecting on her life, Ms. Patterson told me, “I worked hard and I studied hard, and I don’t remember a damn thing.”
If you were an outsider looking at these women, you’d pity them. You’d think it was cruel that our bodies could turn on us in this way. You’d think it was sad that their families have put the burden of taking care of them on someone else. You’d want to intervene.
You’d want to give the lady eating mashed potatoes with her hands a spoon, you’d want to peel the orange for the lady who’s eating it like an apple, you’d want to scold the lady who forgets to flush the toilet and wash her hands after using the bathroom.
I did all those things to my mother. But when I see her in an environment that lets her be herself, it somehow seems okay.
The pain of losing her to a neural degenerative disease doesn’t go away, but the frustration of feeling I had to correct her stops.
I didn’t think she belonged in a nursing home because I was too busy getting her to act “normal.”
If you’ve ever felt that way, or if you might, stop and ask why.
Why are you trying to fix them? Are you fixing them to make yourself feel better?
You can’t fix someone with an incurable disease, but you can fix yourself.
Learn to love them unconditionally. It’s easier said than done, but if she loved me after giving her hell for making me come home by 10 p.m. on Fridays, I can love her even if she forgets my name.