A sense of home

When Anthony Mohamed was diagnosed with multiple myeloma in 2015, a cancer that targets bone marrow, the Toronto resident wasn’t worried about how he and his partner of 24 years, Rick Hirtle, would be treated.

Living in Canada’s largest city and with more than two decades working in health care, Mohamed was able to simply focus on getting better — a journey which now extends to a personal support worker visiting the common law couple’s home every week to provide care.

“I don’t see any obvious homophobia, although it certainly exists in some individuals. But that can exist anywhere,” said Mohamed. “When I was lying in that bed when I was at the hospital, there was zero issues.

“Even the coordinators who were arranging the home care were great. They would ask us questions of how long we had been together — things I would expect they would ask any couple,” said the 56-year-old.

While Mohamed’s experiences receiving caregiving has been positive, Tom Warner, chair of Senior Pride Network Toronto, said this is not always the case for members of the 2SLGBTQI+ community.

“It’s mixed. It is generally better now in some places, like Toronto and some larger communities,” said Warner, whose organization focuses on advocating and providing safe and inclusive spaces for what he refers to as rainbow seniors. “But that is not always the case, especially in communities where there is not a large and identifiable 2SLGBTQI+ community and where there are more issues to receiving inclusive and respectful care.”

He said this may include how the partners and chosen families — people who have decided to love and support each other but are not biologically related — of those receiving care are treated and recognized by the health system.

“2SLGBTQI+ people often do not have their biological family members for support if their family has rejected them or don’t get along with their families,” he said. “Many of our seniors do not have spouses or partners or children who can provide them with the kind of health and support that they need. So, they can be very isolated and vulnerable.

“I think there is a concern, if they identify as a rainbow senior, especially if they are trans or non-binary or gender non-conforming, that they may not receive the best quality of care.”

Warner said he hears concerns from seniors about how caregivers, because of their potential biases or beliefs, might react to memorabilia or decorations in their home, the wearing of jewelry or clothing that might not be considered gender conforming, and medical diagnoses including HIV status.

“This has happened in the past, where the personal support worker has religious views or beliefs and have brought that into their interaction and care of rainbow seniors,” said Warner.

The importance of home – a space where a person feels safe, accepted and fulfilled — is something that Dr. Celeste Pang looked at in a recent 12-week arts and dialogue research project with older 2SLGBTQI+ adults and personal support workers.

“Homes have been an unsafe place in the past for many, and homes that they make today are a result of that struggle and world building. So, to have care workers they didn’t know come into their home is a point of vulnerability,” said Pang, who is a senior research officer with Egale Canada, an 2SLGBTQI+ advocacy organization.

The project, chronicled in the report “Fostering Dialogues,” saw the participants explore themes of home, care and the future of community-based care through conversation, artmaking and the creation of a digital mural with the help of artist Melanie Schambach.

Pang said one of the reasons behind the project was that a lot of older 2SLGBTQI+ adults have concerns about receiving any type of health or home care.

“All too often this fear is born out of negatives past experiences and knowledge, but also fear of others, of care workers,” said Pang. “Care workers in Canada are largely racialized, new immigrants, women. So, we wanted to bring the two different groups together to discuss what home care is and what it can be and find some commonalities.”

She said one commonality that emerged among the participants during the project was that the concept of home is seen as a sense of familiarity, refuge and safety where they could be themselves more than just a physical place.

“The personal support workers who we engaged with all care deeply about their jobs. They all care deeply when they are in people’s homes of respecting those clients,” she said.

Pang said the research project also brough the participants a better understanding of how the people doing the care and receiving care are part of the same system, and that to improve the experience of one, you also need to look at the challenges faced by the other.

“It sounds so cheesy, but we are all people,” she said. “The issue we have as a society is really the undervaluing of care work and care workers, that don’t allow them to do the best they can do because of time constraints or low pay. They also want to treat the home of the client as a very important domain.”

She said her key takeaways from the research project include a need for better working conditions and funding for how we approach person-centric care — in all communities — along with mandatory training among care workers about the 2SLGBTQI+ community and their challenges and concerns.

That education component is something Warner said the Senior Pride Network Toronto is actively doing when called upon. It offers training and awareness to health care service organization to raise awareness of the concerns of rainbow seniors. It is also helping to answer the concerns of older adults who have care-related concerns.

“A common question that we get is, are there home care providers, or health care providers, or long-term care homes that are inclusive and 2SLGBTQI-positive? Because they don’t want to be placed in a position where they are potentially vulnerable or mistreated or not given the quality of care they need,” he said.