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 . 

I have since learned that I am definitely not alone. There are, in fact, thousands of us across the country, quietly managing difficult issues on behalf of our brothers and sisters such as suitable housing, poverty, mental health, and service advocacy. We are doing this work in isolation, unsupported and without adequate information.