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Rebuilding a life with HIV-associated brain disease

For many long-term survivors, life with HIV/AIDS can be filled with hope and well-being. Unfortunately, for many of our clients long-term survival with HIV/AIDS also brings elevated risk for sudden and dangerous associated illnesses, including brain disease.

I was so scared when I went into Casey House. I thought of it as a place where you only go to die. But as it turns out, Casey House saved my life.

John, Casey House Community Nursing Client

“I’ll tell you all about my life, but you’re going to have to be patient,” chuckles John. In his mid-40’s, John* contends with severely impaired short-term memory. He keeps dozens of notebooks stacked on shelves in his apartment, to fill in the gaps in his memory. HIV-positive since the mid-80’s, John ran a successful business in the arts. He lost friends to AIDS through the years, and visited one friend often at Casey House, where he witnessed the care and compassion of our staff first-hand. He never expected to need Casey House himself: he thought he’d made it through the bad years already.

Then two years ago he got a throat infection that he just couldn’t seem to beat. “I couldn’t swallow food, I was losing a lot of weight and got really thin,” he recounts. He ended up in hospital. “One thing turned into another, first it was pneumonia and then meningitis and then encephalitis. It was clear to everyone then that I was going to die. Of course, to me, it was all a blur.” Weeks later, John’s severe brain damage caused him to be declared incompetent by the province. His business was lost, property seized, home gone. He felt angry, terrified, desperate.

Then, despite his anxiety, John agreed to be transferred to Casey House. With the help of our interprofessional care team, in collaboration with specialists at St. Michael’s and Sunnybrook Hospital, he threw himself into an aggressive rehab regimen, desperate to regain control over his life. He stayed at Casey House for 10 months, though he remembers little of that time. “I couldn’t tell you the colour of the walls or drapes at Casey House,” he says now. “But what I do remember are the people. I made some really good friendships, and the nurses, they’ve always been so incredibly kind.”

Today John lives independently, with regular visits from his Casey House community nurse and social worker. Despite ongoing memory and mobility problems, he manages his own day-to-day needs. His medications arrive in blister packs, already counted out so he doesn’t have to remember by himself. He continues to keep careful notes to support his memory, and he’s on a waiting list for supportive housing. He’s even planning to rebuild his business one day. “I was so scared when I went into Casey House,” says John. “I thought of it as a place where you only go to die. But as it turns out, Casey House saved my life.”

*name changed by request