Interviewed by Celeste Pang
Sharon Hunter (she/her) is an advocate and caregiver. She has worked as a counsellor, facilitator, trainer and educator in a range of areas including 2SLGBTQ+ issues. Sharon has been a key interview source for the young onset dementia research conducted at the Alzheimer Society of Canada, informing work on intersectional dementia stigma and advocacy priorities.
Q: When did your dementia or dementia care journey begin?
S: You think this would be an easy question. Most journeys have a definite identifiable start date, but dementia journeys— at least our dementia journey—was really complicated. I noticed some things years ago, but my partner would just kind of laugh it off. For example, she would be driving this weird route home and I would say, “where are we going”, and she’d say “oh, just taking the scenic route”. There were times I wondered if she had had a stroke, and I mentioned this to her doctor, but nothing really showed up. And then there was one week where two really awful things happened with two of our kids. And after that it was like the wall started to crumble; emotionally and cognitively she just kind of crumbled and was having trouble coping with daily living.
The power of denial is so strong because I wanted it to be anything, anything but dementia. She was diagnosed in November of 2020 before the age of 65 so it is considered young onset dementia. That’s when I knew that we were on this dementia journey, and it was definitely the point of no return.
Q: What has been the greatest challenge in being a carer for your partner?
S: Number one, watching her disappear day by day and not being able to do anything to stop it. It’s like watching someone drown in front of you, and you can’t help them.
The dementia behaviours negatively impacted our relationship with our ourselves and with each other. We became people we didn’t even recognize. So that was a challenge. It also negatively affected our relationships with our kids and our grandkids which left us even more isolated. Some people were great and supportive, and some people were not supportive at all. So there was loss upon loss upon loss in this journey because it rearranged our social networks.
Another part of this challenge was immediately being thrust into having to make all the decisions. For her health, for my health, for the house, for the yard, for family relationships, for finances…I became the gatekeeper for everything. And at times—I don’t want this to diminish anybody’s experience at all—but at times I felt like I was a quasi-widow. Like my partner had died, and I was left with everything. But it’s complicated because my partner was very much alive. And so that was hard. I had a lot of anger, a lot of resentment about the direction that the dementia journey took us on. I didn’t want to be on this journey.
And then there were the systemic issues. There was a lack of support in the healthcare system. Having to navigate a new path and deal with homophobia and heteronormativity was an additional challenge. We had gotten to the point where we could be as protected as we possibly could from homophobia. I felt that dealing with the homophobia took a huge amount of energy, and I didn’t feel like I had the energy to be an advocate and a champion because just dealing with the dementia itself was so overwhelming.
Q: Have there been lighter moments, or has it mainly been challenging?
S: It has mainly been challenging. Lighter moments for me are just those moment where I can keep my head above water just long enough to catch a breath and not been in acute crisis. I haven’t yet found gifts in this experience. Even if I could see the gifts from this experience I would still rather trade those gifts in for avoiding this experience altogether.
Some of the lighter moments have happened when family, neighbours, and friends have shown us kindness and love.
Q: So where have you found support?
S: Our access to support was really limited because our dementia journey started in the middle of COVID lockdowns in Manitoba. We did what we could to cope. One of my kids prolonged moving out so he could stay and help us, and thank god he did because there was just so many practical and emotional things he did to help us. I had support from my parents, my daughter and her partner, cousins, neighbours, and friends. Some people would take my partner for walks with them, they would bring us meals, they would help with yard work. This informal support was essential because it’s so hard caring for someone with dementia 24/7. I was so overwhelmed with dealing with the dementia and all of those tasks I couldn’t think to ask for help. So, when people would come and do what they could within their capacity I was so grateful for those kindnesses.
I did call a local LGBTQ group to see if they had any volunteers who could come and do things with my partner. My partner had been so involved in the lesbian community I thought that at this point in her life there might be some support that would come back to her. But there wasn’t.
My partner’s now at a long-term care home and there’s a lot of support there. When I arrived I saw the rainbow flags, and messages up saying that we are welcome, and it was the first time since we started this dementia journey where I felt like I could take a breath and not had to explain our relationship. I’ve not worried about them discriminating against my partner because she’s a lesbian.
I also have to find support in myself. I had to have internal resources to support myself because I was the one there 24/7 supporting her.
Q: What do you want health care and social services providers to know about supporting 2SLGBTQI people living with dementia and their significant others?
S: I want to encourage them to challenge themselves on their biases and assumptions about rainbow folks and to realize like we all have biases. That doesn’t make us bad people, it just makes us human. So acknowledge the biases and assumptions and look to see how they might negatively impact us and then work to make changes.
I often think about the analogy that came up during COVID where people would say “we’re all in the same boat, it’s okay, we’ll get through this.” And then people from disenfranchised groups started saying “we’re not all in the same boat.” Some of us are in cruise ships; some of us are in leaky boats. We’re in the same storm but we’re not in the same boat. I want healthcare and social service providers to know that.
For me my analogy is that I felt like I was signed up for a long-distance race, and I never wanted to be in this race in the first place. But even before I got to the start line I had to run a hurdle race, which is all the homophobia. So when I got to the start line, I was already tired. I’m in the race with all these other caregivers but I’ve got to run over all these hurdles. I want healthcare workers to know that my boat is different, my race is different, and it’s not because there’s anything wrong with me. But there is something terribly wrong with the way society treats rainbow folks. We have more hurdles, there are more barriers.
I would also ask that healthcare workers educate themselves, because I don’t have the energy to be on this dementia journey and educate you at the same time.
Q: Is there any particular advice or learning you want to share with other carers such as yourself who are just beginning their own journey?
S: I think you have to start building a village for yourself and a village for your partner. You need to have people who can physically and emotionally come and help you and your partner. And then you need people who can just be there for you. Because being a caregiver is scary and overwhelming. Build your villages, reach out for help even though it’s hard, and be gentle with yourself.
- Video: Turning up the Volume on 2SLGBTQI Needs in the Dementia Space (English only)
- Research report: Coming Out and Coming in To Living With Dementia: Enhancing Support for 2SLGBTQI People Living With Dementia and Their Primary Unpaid Carers
- Rapport de recherche : Ouvrir le dialogue sur les troubles neurocognitifs : Renforcer les mesures de soutien aux personnes 2SLGBTQI ayant un trouble neurocognitif et à leurs principales personnes aidantes non rémunérées
- Educational module: 2SLGBTQI Identity and Dementia: An Introduction
- Educational module: 2SLGBTQI Identity and Dementia: An Introduction
- Modules électroniques: Identités 2SLGBTQI et troubles neurocognitifs : Introduction à destination des
- Alzheimer Society of Canada: Young onset dementia
- Société Alzheimer du Canada: Les troubles neurocognitifs à début précoce