Some relatives ponder whether it is painful for a loved one to have dementia. Are those afflicted ‘content’ in their confusion and loss of memory, since they don’t remember things anyhow?
Last week I saw a show where a serial killer inflicted pain by stripping pieces of skin from his victims’ bodies, so that the skin cannot regenerate. Eventually, the body ‘forgets’ how to fight infection, and one dies.
This to me is a metaphor for the process of forgetting through dementia. As the brain’s connections strip away, the person ‘forgets’ how to create thoughts, sentences, and even actions.
I believe there is pain in the cutting off of levels of communication. That’s how I imagine my mother feels pain when she tries to create a thought, having been stripped away of the tools to do so. Instead, she steals comfort in movement, in song, or designing a ‘still life’ with her half-eaten dinner–food piles and neatly placed cutlery. If one tries to speak with her, asking a slightly profound question or any type of question requiring some thought or recollection, she grows defensive through dismissal, frustration, or impatience.
She plays with her hands. She does movements to distract herself from the pain of the struggle going on in her head to speak normally, think normally.
I saw Mom each of five days in the Elizabeth residence, an assisted living home in south Wisconsin. We had a couple of good walks. But on the third day of my visit, Good Friday, she had a fit in front of me when I brought her back to her room after a short car ride around the neighborhood. ‘I need to get out of here,” she said of her room. “I need to go home now! I never thought you’d do this to me.’ She shook her fists in the air and branded me with the “F” word. She refused to take off her coat or to sit, or to take in the heavenly scent of the new Easter lily. Her eyes fixated on mine, looking for a home in them. Looking to me to magically provide confirmation of something that exists somewhere in her head, a stylized collage of past places factored together through unreliable synapses of thought. Does she mean the house with yellow siding where I grew up? Or the condo with the swimming pool from which she just moved last month? Or, is it another house, a cottage in the British countryside where she was sent as a child during the war? Or does she mean my current home, 900 miles away in New York?
That is when I detach. It doesn’t matter what I say or what questions I ask, because none of it is lighting up the communication switchboard. She herself cannot articulate “home” anymore, and yet wants to be there, as we all do.
I glance upward at the institutional whiteness. Sometimes I imagine God is a stain on the ceiling, watching the theater of human frailty below.