The Canadian Caregiving Summit 2023 brought sibling carers out of the shadows, creating space for our stories, showcasing our contributions to caregiving and inviting our input into a National Caregiving Strategy.
When my mother died almost 10 years ago, I became the primary caregiver for my brother, a person with Down syndrome. At that time, I felt totally alone and alienated in my new role. The experience of being a sibling caregiver didn’t seem to register with anyone, there was no one to talk to or help me understand what to do. I felt that my new role as sibling caregiver and all it entailed, was totally invisible to those around me. From this experience came the emergence of Siblings Canada , now an initiative of the Canadian Centre for Caregiving Excellence.
Sibling carers are undervalued by policymakers
From Nov. 6 to 8, the Canadian Caregiving Summit , hosted by the Canadian Centre for Caregiving Excellence, brought together lived experience experts, leaders, policymakers, and researchers across the age, disability, and illness communities to work together to build the foundation of a national caregiving strategy.
Siblings Canada , founded by myself (Helen Ries) and Becky Rossi to connect peers who care for a sibling with a disability, had two tables in the middle of the conference room to encourage siblings of people with disabilities to connect with each other. While there was a group of us already connected and very excited to meet in person — many for the first time — what was most remarkable were the number of conference attendees who were not only realizing that there was a community to which they belonged, but who were also connecting with a part of their identity that they may have not known was so appreciated.
I am so grateful to the Canadian Centre for Caregiving Excellence for bringing sibling caregivers out of the shadows. We are here, we are doing some heavy lifting and what we have to say matters to the lifelong well-being of our brothers and sisters with disabilities.
Originally published in Healthing. View the original article here.