Melting Together: A Story by People l/w Dementia

Posted on May 4, 2017

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My friend Romina and I co-created The Boomers Club, a wellness program at the Alzheimer Society of Toronto, for people living with Young Onset Dementia (under age 65) and their family care partners. We focus on physical exercise and cognitive stimulation. The group has a strong component of peer support for people living with dementia as well as their care partners. We often see people living with dementia huddled in a corner exchanging strategies to cope and we see caregivers supporting and encouraging each other as well. We are so proud to say that this group has almost a 90% retention rate!

Tonight, we decided to explore storytelling. There is so much focus on memory or the lack of it, that it can be frustrating for the person living with the disease! Anne Basting says, “Forget memory, try imagination!” So we decided to explore Timeslips with our participants. Timeslips basically involves showing participants living with dementia a picture – of an unknown or unidentifiable person(s) or situation and letting them create a story. To know more about Timeslips, please visit: http://www.timeslips.org/

We were a large group today, so we divided ourselves into three groups. We had volunteers sitting with participants. They circulated the pictures, asked who, what, when, how, why, where questions and wrote down the responses almost verbatim. In my group, we mostly had people living with dementia, and one caregiver. We had a former social worker, a sudoku champ (reigning), a professional, a dressmaker, a teacher and then some!

Here’s the picture we showed them:

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And here’s the story they came up with:

Melting Together

It was a hot day. Donna and Eva are walking to the park. They bought vanilla ice-cream cones. They are going to a crowded, but fancy place. They are enjoying their ice-cream in silence. They are heading somewhere nice. Look at their fancy hats and glamorous dresses, both designed by Manamma*, the famous seamstress!

Donna and Eva have been friends for many years. They love spending time together. They love talking about other people. They are happy. They have decided to get married – because this is Canada! They can get married! They had met years ago at the ice-cream parlour and fallen in love as they both picked cherry-vanilla ice cream!

Note: Donna, Eva and Manamma are members of our group! Manamma is a pseudonym, given to protect privacy.

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In our group, human rights are a regular topic of conversation. We serve every ethnicity, gender and sexuality. Unbeknownst to this story-weaving group, they’d validated some of our participants. I saw moist eyes.

As soon as I read the story out loud, our 57-year old former social worker (now living with Young Onset Alzheimer’s) shouted out, “I love this group”. And when the other groups finished their stories, she said, “We can write a bestseller together!”

One of our participants came up to me after; she held my hand for a long time. She said, “I spent almost the whole day crying. I am slowing down. I can’t bear it. I am so aware of all the things I cannot do. But then I come here – the energy is so positive. Everyone does what they want; no one is telling them what to do. We all encourage and help each other. I feel so happy!”

We had a new participant join our group today. He entered and said, “I was waiting outside. I heard so much laughing…I thought this can’t be the Alzheimer’s group. Everyone is too happy!”

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Romina and I are so fortunate to be able to run this group. We learn so much about life, love, relationships and dementia each time we run this group. This group is the reason I am a whole person today. I cannot thank the Alzheimer Society of Toronto enough for believing in us and giving us a free hand to design and run this program.

Next stop? Well…the bestseller, of course!

(To know more about dementia in Toronto, please contact the Alzheimer Society of Toronto at 416.322.6560.)

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Posted in: Relationships