This Week's MY NEW LIFE Chapter
My New Life begins on July, 2024, one day after the second anniversary of my wife Pat's death. This unit represents my sense that, although I will always grieve for Pat, I have created/discovered a new and good life as a single man.
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Ch.268 People with Dementia Aren’t Cute
Sept. 2024
I was volunteering at Azura, my deceased wife’s memory care facility, when I overheard one of the staff refer to a resident as “cute.” This resident had been holding a doll, I believe, and smiled at the caregiver. The staffer’s remark triggered a feeling of anger, almost outrage, in me, as I remembered how much Pat hated being called cute while she struggled with dementia.
I do have a couple beautiful pictures of Pat at Azura holding one or two dolls. Smiling. Laughing. I can see how some people might consider her at those times as child-like, cute. But 77-year-old Patricia Potter-Efron wasn’t a child. She was a grown woman with a terrible, brain-destroying disease. I am grateful that holding those dolls gave her pleasure, of course. By the time they were taken I appreciated anything that gave Pat (and me) relief from sadness.
Sometimes I forgot to treat Pat as an adult. On one occasion the staff nurse and I were trying to decide whether to increase Pat’ s pain medications. Standing beside the door of her room, we didn’t think about including Pat in the conversation. Suddenly Pat shouted “Go for it!” Startled, we walked into the room. “Were you listening to our conversation?” I asked. “Pat nodded her head. “Do you mean we should increase your pain meds?” Yes, she nodded again. In retrospect, I am amazed, and I feel ashamed, that I had not even thought about consulting with Pat about such an important decision. I had assumed she wouldn’t understand. In effect, I had treated her as a child or worse, infantilizing her.
Pat and I once published a pamphlet entitled “I Deserve Respect,” referring to men and women working through shame issues to get to a place where they could demand respect from their partners, friends, and colleagues. I think that title could be changed to “People with Dementia Deserve Respect.” So do their caregivers, for that matter.
I’m writing this chapter as a reminder to myself (I still interact with many people who have dementia) and as a request to any readers: please treat persons with dementia respectfully. Don’t make jokes about them; don’t call them cute; don’t treat them as if they were children, If they do something you find amusing, laugh with them, not at them. Remember these mostly older individuals are our elders, even if they no longer can share their wisdom.
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