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"Caregivers came in through the door without asking permission, I had no choice"

Dominique, caregiver of her spouse: Fall 2023

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Discover Dominique's story as a caregiver: even though her journey as a caregiver began so unexpectedly and abruptly, it was able to guide her towards new ambitions, where a sense of community illuminates her path. 

Dominique, 71, was born in Belgium where she worked as an occupational therapist in psychiatry. At the age of 24, she immigrated to Quebec in the 1970s.

This change of country was also accompanied by a career change to theatre and, later, community theatre. For more than 40 years, this profession has allowed her to create and forge close ties with communities. 5 years ago, her life was turned upside down when her husband Pierre, with whom she has shared her life of 33 years, was diagnosed with Alzheimer's disease. "Caregiving came in the door without asking permission, I had no choice," she says.

In Dominique's words, the arrival of caregivers in her life had the effect of a "house of cards collapsing". She, who was an independent woman, both in her life and in her relationship, had to put aside her plans and dreams to rebuild a new life. However, two cards have remained in balance and allow her to continue as a caregiver: those of creation and that of love. This is how Dominique continued her life as a community artist by setting up Les Allumettes, a creative group that has brought together ten caregivers for the past two years.

During the meetings, the members of the group create, support each other and laugh a lot. In addition, Dominique is a storyteller and tells her lived experience as a caregiver through three animal characters in Les Craquelins, a tale that is both intimate and political. As for her love for Pierre, it intensified through caregiving and her relationship became more complicit, even symbiotic. Dominique dreams of a living environment for caregivers and their loved ones where she can continue to accompany the one she loves in a spirit of community. She deplores the lack of accommodation alternatives for people with a loss of autonomy and the fact that the people who accompany them are generally unable to live with them.

Caregiving confronted her, more personally and profoundly, with the injustices of the social system. However, her experience as a caregiver has also given her the opportunity to develop her ability to appreciate the essentials, to make sense of life, illness, old age, bereavement and death. In addition, she has learned to become more patient, which her friends and family point out to her! For Dominique, each person is different and has distinct needs. When asked what advice she would give to someone who is just starting out as a caregiver, she replies:

"Don't listen too much to advice, listen to yourself!" In fact, her tale, Les Craquelins, ends as follows: " (...) I still don't know how to recognize wild mushrooms and I will never go around Guatemala. But I'm discovering every day a little more a new country, strange and fragile, a world that is moving backwards. My compass doesn't work anymore. I'm sailing blind, I'm dizzy, I'm scared. But I'm not sinking. It's crazy how much strength you have in you."

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