Advocacy, Death & Dying, Life & Living

my mom is a question mark: august 9, 2016

It was hard to imagine how Mom could have possibly been comfortable. She sat in a wheelchair, her swollen feet up on the footpads, her body contracted into the shape of a question mark: back hunched, chin to chest, broken right arm held in a sling wrapped under her breasts (and propping them up), her upper torso was squeezed into a golf shirt that was at least one size too small. Her arm was completely black tinged with blue in the sling, and sore to the touch. It must have been extremely painful to get the shirt on.

Nevertheless, when her friend Shirley, with whom we were having tea and cookies in the living room asked her, she said she was fine. She responded likewise when I asked her, and got a little impatient with all the questions about the state of her well-being:

We ought to believe what people who live with dementia tell us about their own experience in whatever way they communicate that information to us, which is often through their actions and words. We must listen, not impose our judgment of their circumstances on them, but rather check in with them and believe what they tell us even when, or maybe especially when it doesn’t fit with our preconceived ideas.

Our afternoon involved some storytelling, at Mom’s specific request. Strangely, I had a bit of a hard time coming up with a story, and in the end suggested The Paperbag Princess, which, keen to hear any story at all, Mom readily agreed to:

Mom was not a feminist, as I am, and I think she might have preferred a different ending to the story. But endings are mostly not ours to choose.

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