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Dementia Sidebar: A light in the fog

Underneath the pain of dementia, faith runs deep

By Trisha Elliott

I found Mary sitting beside her bed each time I visited, cradling her half-dressed doll, rocking back and forth in her wheelchair, mumbling. When I squatted beside her, she didn’t make eye contact. Coherent conversation was out of the question; the only time my parishioner outwardly responded to anyone was when staff at the continuing care centre tried to coax her to give up her baby. Then she let out a string of curses that would make a sailor blush.

One day, I brought my infant son Aidan to see Mary and asked her if we could trade babies. When I placed Aidan in her arms, she looked at me squarely in the eyes and smiled. A breakthrough!

Shortly afterwards, I met Mary’s daughter Janet. Through tears, she described what it was like to lose her mother, piece by piece, to Alzheimer’s disease. “She doesn’t recognize me anymore,” she said.  “I’ve lost her. She carries that damn doll all day.” Acknowledging Janet’s grief, I responded that I didn’t think she was lost to her mother. “I’ve been wondering if in your mother’s mind, the baby she’s carrying is you. I think that she has receded to her happiest place — holding and protecting you.”

More tears. Eventually, Janet’s embarrassment that her mother carried a doll everywhere she went was replaced with the possibility that she was witnessing her mother’s care for her. The fierce protectiveness she had known her whole life was still there, her mother’s love cast in a light she had never known.

Dementia in all its forms destroys connection, and not just the networks of brain cells, but connections between families. I have come to learn that one of my chief responsibilities in providing spiritual care for people with cognitive diseases is to help restore or renew connections.

Which means being prepared. I make a point of finding out about the person’s work life, hobbies, even favourite foods before I visit. I have brought all kinds of things to make connections: my son for Mary, a birders’ book for a man who spent his life documenting warbler habitats, paint and canvas for a crafty lady. For the last year, I’ve been visiting a woman in later stages of dementia who loves potato chips. I especially enjoy those visits — Pringles bring us mutual joy!

I don’t think we can overestimate a ministry of presence. The Jesus of the Gospels was a man of few words, but his love ran deep. God’s spirit travels deeper than words. I trust that even when I visit people who can’t acknowledge me, they can witness the spirit through me, through the calm, kind energy I bring into the room.

Grace didn’t know her family or even her name. I was having trouble relating to her. One day on a whim, I wheeled her beside an old piano and, with a grin, began playing Amazing Grace. A thin voice chimed in. I looked over my shoulder. It was Grace! She knew every word. All five verses. I played old hymns for an hour and Grace sang along. The next week, I invited Grace’s son and daughter to visit with me. In astonishment, they listened to their mother sing. They sang together while I played. There came a time when Grace could no longer sing, but her family never stopped singing. On the eve of her death, they sang her to the next life.

Nursing homes used to get me down. At first, I didn’t know what to do or what to say. Witnessing families struggle was sad. It still is. But no one wants to be pitied. We want connection. We want our lives to have meaning and dignity. We crave good news, especially when we are agitated and confused or slowly and painfully losing the ones we love.

Caregivers are harbingers of good news. The good news is that when the body breaks down and words and memory fail, God’s spirit doesn’t. God’s peace truly can, as the Apostle Paul says, “passeth understanding.”

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