My Big Sister Carol: Seeking to belong, desperate for a voice

Carol suffered brain damage at birth, leaving her to face life with mental disabilities.

Being part of a community and a sense of belonging were important to her, says her sister Lisa.

But as her schizoaffective disorder took hold in her later years, an effective support team became critical.

She found that support network in the form of her family, family doctor, psychiatrist and support staff. They all knew Carol well and worked together to help her, says Lisa.

That changed as the hospital took control of more and more of her care, she recalls.

“I know her condition was complex and demanding but I’m not sure the hospital saw that we were part of the solution,” recalls Lisa, who eventually saw her fears realized, as Carol eventually died in hospital.

“I just wish I could have done more for her in the last few years of her life. I wish I had a stronger voice.”