Advocacy, family and the 2SLGBTQIA+ caregiving experience

Ian Stewart is a jack of all trades and a master of many. Well-spoken and worldly, he is a writer, a leader and an advocate. He’s also a caregiver.

Raised in Gold River and Gibsons, Ian spent time in Burnaby and Ottawa before moving to the UK in 1996. To bridge the distance from his family, he had regular phone calls with his father, Alex, in Gibsons and spoke weekly with his mother, Jean, in Surrey. Over time, he noticed changes in his father’s personality and behaviours. It wasn’t long before he started to see similar concerns with his mother. Shortly after his father was diagnosed with dementia, Ian left the life he loved abroad and moved back to B.C. in 2011.

Ian is part of a large but often under-looked community: 2SLGBTQIA+ caregivers. After moving home to help care for his parents, he found there were more expectations put upon him than his brothers, who both had grown-up families and were in heteronormative relationships.

“It felt like my experience was devalued,“ Ian says. “Like what I have going on is less important.“

While living in England, Ian had attended a free, public training series aimed specifically at sustaining gay family caregivers. He wasted no time finding that expertise upon his return to B.C., calling the First Link Dementia Helpline to see what was available.

“When things are out of control and you’ve got someone in distress, it’s hugely helpful to call and get somebody on the line who knows what to do,“ Ian says.

After listening to Ian’s needs, Helpline staff connected Ian with their Rainbow Support Group, which provides a safe space for 2SLGBTQIA+ community members to exchange information, build resilience, cultivate insight and create friendships with other care partners. Having access to a support group that understood his specific situation as a gay man made it easier to participate and feel reciprocal appreciation.

“Whether Two-Spirit, lesbian, gay, bisexual, trans, queer – whatever a group member’s situation — I draw great encouragement hearing from other people whose loved ones are living with dementia, and learning what strategies work for them,“ Ian says.

Years after requiring placement in long-term care, Ian’s father died in 2018. It had become clear by then that his mother also needed assistance, and Ian decided to move in with her.

Although at retirement age, Ian’s schedule is as busy as ever, keeping track of his mom’s daily activities, including a senior’s day program and Minds in Motion, the social and exercise program offered by the Alzheimer Society of B.C.

He also takes his mom to medical appointments. While she has not received a formal diagnosis, progressive impairment has been confirmed. Despite changes to her cognitive abilities, Jean is living life to the fullest.

“She has a normal life. She has a friend in the building who will call her up to go on walks,“ Ian says. “When she attends the day program, she gets herself ready and catches the HandyDART. She has agency.“

Although Jean’s activities allow Ian some time to himself, a large part of it is dedicated to errands and housework. While he does get the occasional walk in, his life in B.C. is noticeably different from his time in the U.K.

“I’m Secretary General for Literature to the International Lesbian and Gay Cultural Network,“ Ian says. “On accepting in August from Stockholm their Thor’s Hammer commendation, I had to cite how inadequate I felt, when nowadays I contribute so little.“

Ian is honest about the weight of caregiving. While the daily routine with his mom is relatively rigid, every day ends up being different. He does his best to adapt.

Like many others on the dementia journey, Ian tries to involve others, to build a community of care around these responsibilities.

“I have not had the opportunity to wrap up the novel that my UK colleagues are so eager to get into print, but caring for my mother brings unexpectedly and unpredictably its own rewards,“ Ian says.

Kari Barrett (she/her) is a writer and communications professional