And Then There's This... Norma: Solitary Confinement
This is the Feb. 28, 2020, excerpt from “Stardust: An Alzheimer's Love Story,” my day to day accounts of caring for my wife Norma in the advanced stages of her dementia.
She is tense with frustration. There's something she must tell me, and it will not come out. Seated in her wheel chair, her hands gripping hard the arm rests, Norma leans forward, her mouth open and grasping for the right word, like a diver gasping for air. Then she slumps back in defeat. I try to help her isolate the subject she's thinking about. Is it the kids? Is something hurting her? Is it the weather? Did she see something out the window? Is she hungry? Does she want the TV turned off? Is it her dog? Each suggestion is met with a “No,” and her “No's” are increasingly impatient and angry.
“Oh, god!” she says in despair, and my heart breaks. I ease her out of the wheel chair and help her onto the sofa so I can hug her and hold her hand.
I try to imagine how she feels — to put myself in her agony. It must be like being among people who don't speak your language, I think. But I quickly realize it's not like that at all. In that situation, I would still know words, visualize images and comprehend sequence. All these mental anchors have been severed from Norma. Words to her are like snowflakes that melt and vanish before she can recognize their shape.
She is profoundly depressed. Whatever it is that she wants to tell me still weighs on her. She puts her hands together palm to palm, and I watch them shake. I ask her if she wants to hear some music. She shakes her head “No.” Would she like for me to bring her dog in to lie beside her, “No,” again. She doesn't even want me to scratch her back — which I read as a complete surrender to misery.
In desperation, I furtively text our youngest daughter, Rachel, to call — and then act properly surprised when she does. Rachel used to work in nursing homes, but for the last several years she's been a surgery scheduler at Vanderbilt University Hospital. She's off work today with the flu, but she sounds cool and cheerful talking to Norma, casually asking how her day's going and telling her in great detail about our granddaughter's senior year triumphs. I know Norma would rather not be forced to talk — to respond to Rachel's bright chatter — but I also know she has such ingrained politeness that she'd sooner be nailed to a cross than thought rude. So on they talk.
Rachel's intervention works only partially. But it loosens Norma up enough for me to move in with my silliness and jokes, which I do. Although it was only two days ago that we watched “Smokey and the Bandit,” I put it on again. Then I go into the kitchen to get Norma a Coke. When Jerry Reed begins singing “East Bound and Down,” I hear Norma humming — not softly or absentmindedly but with the zest of a real performer. I'll never know what she was trying to tell me. But her humming is a message I can always decipher.
