A quarter of a century ago, there were few resources and little support for those living with HIV/AIDS.
The illness was typically a death sentence, and fear and a lack of understanding left many on their own, shunned by friends and family alike.
Casey House in downtown Toronto was a much-needed facility at the time, serving as the first HIV/AIDS hospice in Canada.
While attitudes toward those living with HIV/AIDS have shifted, the organization’s work remains extremely valuable to this day.
Casey House began as a hospice for those diagnosed with HIV/AIDS, offering them dignity and compassion.
The organization has now been around for 25 years, with the anniversary marking a perfect time to both look back on the difference it has made in the lives of so many and to look forward to bright next steps with an upcoming move into a new facility fronting onto Jarvis Street.
“Back then, there was a massive demand for our beds,” said Casey House CEO Stephanie Karapita. “The number of deaths has dropped dramatically, but (those with HIV/AIDS) still need compassion.”
Casey House was founded by a group of volunteers that included socially conscious journalist June Callwood, and served primarily as a palliative care facility. When the beds were full, the organization began offering more outreach, with caregivers providing home care to those in need.
“Our staff started to go out to help people who wouldn’t normally have access to health care in traditional locations,” Karapita said. “There were people who were living chaotic lives, dealing with mental illness, homelessness and the stigma of being HIV positive.”
While Casey House is a health care facility, it hardly meets the stereotype associated with such sites. It was designed with comfort in mind, providing spa-like treatments for clients who were often isolated due to a lack of education surrounding HIV/AIDS.
“We started from a base of compassionate care and that just flourished over the past 25 years,” said former Casey House board chair Sandra Cruickshanks. “We were at the forefront in terms of meeting our clients’ care requirements and we’ve evolved from being a true hospice into being a place where people can get all kinds of support.”
That list of services will grow when Casey House moves into its new location with the implementation of a long-awaited day health program, hot meals and more.
Richard Silver, who volunteered at Casey House in its early days, first became involved when he began losing friends to complications stemming from HIV/AIDS.
“I had friends in the hospital and when I went to see them, I would have to (wear a) gown, wear gloves, cover my face,” he said. “Another friend of mine was at Casey House and he was treated so well and his family was treated well. It’s great at making people feel comfortable and it has such a warm atmosphere.”
While Casey House is tucked away on a quiet street in downtown Toronto, its impact has been noted around the world. It has hosted visits from the late Diana, Princess of Wales and Elizabeth Taylor, and those visits helped shift attitudes toward those living with HIV/AIDS.
“Princess Di came to visit and when she walked in, she met a person in a wheelchair and knelt down to chat at his level and hold his hand,” Silver said. “At the time, it wasn’t the fashion to do that. Here you had the Princess talking to people and shaking their hands when their own parents wouldn’t.”
Casey House client Bruce Lippett spent over three weeks in hospital due to complications due to HIV/AIDS, after which he came to Casey House to recuperate. He said the difference between hospital care and the care he received at Casey House was night and day.
“The food’s great, the care’s great, you get your own personal nurse every day,” he said. “The doctors here are amazing and they really listen to you. You’re an individual case; you’re a person and not just a number.”
As medical options have improved with the advent of antiretroviral drugs and other treatments, the prognosis for those diagnosed with HIV/AIDS has improved greatly. While there is still no cure, the illness can be managed more easily, meaning a stay at Casey House now gives clients a chance to relax and focus on getting better instead of awaiting their death.
The care clients receive while at Casey House certainly makes a world of difference.
“I’ve seen people come in and thought ‘they’re not going to last the week,’ but then a month later, they’re dancing out the door,” Lippett said.
The organization’s 25th anniversary marks a bittersweet anniversary.
“We’d rather not still have to be here, but as long as the need’s there, we’ll be there,” Karapita said.
Casey House’s annual SnowBall fundraiser is set to take place on Saturday, March 23. The funds raised will go toward the organization’s programming, with other funding coming from the Ministry of Health.
For more information about Casey House, its services, its history and the SnowBall fundraiser, visit www.caseyhouse.com