Recently I had had some disturbing conversations with some very good friends. They were discussing their discomfort with a mother or father experiencing dementia. Equally disturbing, I was unable to give them comfort or hope and if not hope, at least a reason to continue to try.
Her mind is gone
There is no one there
I never see her because she doesn’t know me
Time for her to die.
Or only a sad, stoic face.
I tried to remember when I felt like that. It wasn’t that long ago and it’s how I was raised. Walk away and don’t look back. These are lives of no real value.
So what changed?
Of course for me it was when Mom began to paint. Mom’s paintings and those of her companions in Supported Living were undeniable and delightful evidence that I was wrong. True, her memory and her ability to communicate verbally were ebbing but her imagination was not only intact but soaring.
It was me who changed. The art was so fascinating – especially when she began transforming everyday objects into things of wonder – fanciful, mischievous and occasionally downright scary. Plus everything was perfectly symmetrical and tended to have a face. I finally grasped the idea the through the art, she was communicating ideas and emotions she couldn’t express any other way.
So I replaced sadness and denial with joy. I stopped trying to get her to “come back” but instead became a member of her new family.
But what about my friends? The art was one way. But it can be anything you can share – that you enjoy doing together.
Music – singing songs together – playing the music of their youth. Dad loved Hawaiian music; they courted to Paul Whiteman and his band. Games – playing catch with stuffed animals, playing a game (with Mom it was Scrabble), making something into a game. If she asks you the same question over and over and over, make up a story. It can be anything – a touch, a smile.
The important thing is to let go, live in the moment and have fun. Stay connected.
I don’t mean to imply that living with Alzheimer’s is rosy. It’s not. But I tell you truthfully, I am not as afraid of the disease as much as I am afraid of living as one of the feared and forgotten, without a supportive social environment, without friends, without opportunities for creative expression, dismissed as an empty shell.
We are blessed to live in Seattle. It’s a dementia friendly city in which people living with memory loss and dementia are increasingly welcomed as valuable members of the community, encouraged to live with fulfillment and love.