Alzheimer’s and Dignity
Seeing the human being inside the shell.
A few years ago I went to an 80th birthday party for my friend’s mother. It was held at an elegant restaurant and she was celebrating this milestone amidst a crowd of well-wishers. The only blemish on this lovely day was that the guest of honor had dementia.
Not only did she not recognize anyone there, including unfortunately her daughter, the hostess, but her experience of life had narrowed to the material. I watched her slurp her spaghetti, bib at her chin, sauce running down her face – and I wanted to cry. It wasn’t just the tragedy of Alzheimer’s; it was the horror of a once poised, friendly and dignified human being reduced to infantile behavior – and in public view.
I was reminded of this painful scene when I read one of the tips from Letty Cottin Pogrebin’s new book, How to Be a Friend to a Friend Who’s Sick:
“Don’t infantilize the patient. Never speak to a grown-up the way you’d talk to a child. Objectionable sentences include, “How are we today, dearie?” “That’s a good boy.” “I bet you could swallow this teeny-tiny pill if you really tried.” And most wince-wroth, “Are we ready to go wee-wee?” Protect your friend’s dignity at all costs.”
And your mother’s. Or your father’s. They have so little of it left. But we need to keep seeing the human being inside the shell. Just as, with adolescents, we need to see past the defiant, hostile exterior to the scared small child inside, so too we need to look beyond the memory loss and diapers and other infirmities to the (once vibrant) human being trapped within. That person deserves to live out the remainder of his or her life with their dignity intact.
And it is our job – their children, their spouses (God forbid), their friends, to make sure it happens.
We have a mitzvah to honor all creation. How much more so those we love, those who have loved us in return, those in need.
We are very careful to treat the body with respect after someone passes away. Surely this applies double to the person while they still live.
When my father had Alzheimer’s, my mother spent her days with him at the nursing home. She made sure that the staff treated him as a human being and not as an inanimate object. She rewarded his caregivers to encourage this attitude because, despite their name, many of these low-wage workers are not at all caring (although there are some who are absolutely wonderful!) and completely miss the tzelem Elokim, the image of the Almighty that resides within this damaged mind and body.
The experts say that you shouldn’t keep correcting an Alzheimer’s patient. It makes them quite agitated. Perhaps it’s because they too are trying to hold on to a shred of dignity, that somewhere in their confused brain they recognize that they are not being treated with respect.
But Ms. Pogrebin takes it further. Her prescription applies to all patients, no matter the diagnosis.
We don’t forfeit our humanity when we enter a hospital (although the institutional nature of the environment certainly encourages that) or are struck with an illness.
But we do lose so much. Our lives are irrevocably changed. Let’s make sure we and those we love don’t have to sacrifice their dignity as well.