When Sharon Hunter’s very long time companion Stacy was recognized with dementia in 2020, “every part simply sort of shattered,” she says.
Having fought and gained the battle to alter the legal guidelines towards same-sex adoption years earlier, she says it’s been gut-wrenching to see her as soon as formidable companion “sink within the quicksand” of dementia.
“I’ve exhausted myself throwing ropes … and doing every part I can to get her out, and I can’t. And so I’m sitting right here and I watch her sink. And it’s devastating,” she says.
Together with contending with a life-altering analysis, Sharon says navigating the healthcare system for dementia care as a same-sex couple has been fraught with homophobia and heteronormativity.
“It has sort of been a nightmare on prime of the nightmare. We got here out years and years in the past, however having to navigate the healthcare system for dementia meant that I needed to come out over and over to caregivers,” she says.
“They’d all the time be asking us questions like, ‘who’re you? Are you her daughter? Are you her sister? Are you her buddy? Are you her mom? Are you her neighbour?’ And no one, no one requested us, ‘are you companions?’”
With each occasion of explaining their relationship got here a recent spherical of trepidation and anxiousness.
“It’s already onerous coping with dementia, as a result of it shreds your coronary heart and also you’re terrified concerning the future and what’s going to occur, however then you definitely’re having to come back out [repeatedly] and then you definitely’re open and susceptible since you don’t know the way individuals are going to reply. Are they going to now deal with us in a different way? Are they going to dismiss us? Are they not going to take heed to what we are saying?”
Sharon feels a systemic tendency to imagine heterosexual as default had critical penalties for Stacy’s prognosis.
“We had an appointment with one of many specialists they usually didn’t invite me in to the appointment. And I feel that led to a misdiagnosis [or] solely led to a partial analysis,” explains Sharon.
“Stacy was embarrassed about having dementia. She didn’t need individuals to find out about it. So after all she was superb at protecting it up. So I feel she in all probability didn’t inform them every part, and naturally then you definitely’re not getting the total image of what’s occurring at dwelling.”
Stacy was initially recognized with main progressive aphasia.
“However I needed to advocate for months after that to say, ‘I feel that is one thing extra as a result of she’s paranoid and has delusions and heightened exercise.’ And so I saved saying, ‘I feel she has Lewy physique dementia.’”
Stacy was finally recognized with that situation. Provided that early detection is essential for all sorts of dementia, Sharon can’t assist however surprise if they may have carried out extra for her companion’s well being had she been within the room throughout these early appointments.
Getting the fitting care was additional stymied as a result of Sharon was not knowledgeable of the second analysis. Certainly one of Stacy’s relations with whom they’d little contact bought the decision as a substitute.
“I used to be listed as companion on the entire types. I used to be listed as the one that needed to pay the invoice. That they had a duplicate of the ability of lawyer. They usually ended up telling anyone else her analysis … it’s weird. It’s humiliating,” says Sharon.
She made an official grievance which has since been resolved, however she says it ought to by no means have come to that.
“I’m by no means going to have the ability to show that that was homophobia, however why would you try this? … I don’t know if that will’ve occurred to some who recognized as straight,” she says.
Marketing campaign for change
Experiences like Sharon and Stacy’s are on the coronary heart of Egale Canada’s ‘Assist Us Stay’ marketing campaign, which highlights the inequities and injustices confronted by members of the 2SLGBTQ+ group as they navigate dealing with dementia. It’s knowledgeable by a report the group revealed final 12 months on the prevalence of dementia and cognitive impairments locally.
“Members of the 2SLGBTQ+ group are at two to a few instances increased danger of dementia due to cultural trauma — which is principally day-to-day discrimination and stereotyping that we expertise as a part of our lives,” says Egale’s government director Helen Kennedy.
“Seven per cent of our group members are over 65. And so each decade of their existence, they’ve confronted discrimination, whether or not it’s state-sponsored or social discrimination at work and the schooling system. So this trauma clearly impacts our group members and it results in a excessive danger of dementia and cognitive impairment.”
The marketing campaign contains quick audio tales contributed by ten individuals, every offering a glimpse into their or their companion’s journey with dementia.
In Sharon’s story about Stacy, she echoes the findings of the report, relating it to their harrowing combat for adoption rights.
“I feel the mixture of the societal issues, the trauma that she skilled, the trauma that our children skilled; as a result of we needed to bear witness to that, I feel all of these issues contributed to her growing dementia for positive. However, I feel trauma does that, proper? Trauma sort of splinters individuals off from one another. It’s like a bomb going off in your midst, and we simply had lots of traumas,” she shares within the audio clip.
By way of these tales, the marketing campaign goals to show the boundaries Sharon and Stacy, and hundreds of thousands like them, proceed to face within the healthcare system.
“It’s a really cis, heteronormative system. As they age, members of our communities face the worry of additional discrimination once they have to hunt out medical care. How do they strategy a doctor, a long-term care facility, a caregiver with respect to their identities? Who they authentically are can generally be the reason for a significant trauma due to the discrimination and the homophobia and transphobia that members of our group expertise … it’s extremely unhappy, however it’s one thing that’s taking place and other people want to pay attention to it,” says Helen.
As well as, the marketing campaign supplies sources for caregivers in addition to these working in healthcare.
“We do have allies inside the healthcare system, however generally individuals are unsure how you can interact. They’re afraid they’ll say the fallacious phrase, they’ll use the fallacious pronoun, however there are many sources obtainable to people to make them extra snug, engaged and actually educate them round these points and extra,” says Helen.
‘Assist us stay’ can also be centered on advocating for higher illustration.
“Historically, we have now not been included in analysis — that should change. We all know traditionally that our group members are by no means, or are not often included in these conversations … I feel that we must be included in each dialog as a result of our wants are fairly totally different they usually must be addressed,” says Helen.
She provides that one of many key elements of the marketing campaign is to encourage and foster empathy.
“Folks want to essentially perceive what it means to be a member of a marginalized group. Folks take their very own lives very a lot without any consideration when it comes to … [navigating] their manner via the world. That’s [not the case] for members of the 2SLGBTQ+ group,” she says.
“How [we] navigate the world is [our] main focus due to security. You must determine what do you do if you get right into a cab or an Uber? The place do you ship your youngsters to high school? What sort of schooling are they getting? What are your neighbours going to consider you and your companion? Every thing that everybody else sort of takes without any consideration is heightened inside our communities.”
Sharon hopes Egale’s marketing campaign will go a good distance in permitting group members to age of their genuine identities.
“When [2SLGBTQ+] individuals age, they’ve to return into hiding … as a result of there isn’t a protected place for them. So I feel the truth that Egale is doing this marketing campaign and bringing consciousness to because of this it’s going to open it up. It’s going make extra individuals conscious. And I suppose what I need individuals to know is consciousness can lead us to a greater understanding and to deal with each other higher,” she says.
“Heterosexism, sexism, ageism, sizeism, racism – all of the ‘isms’ have hate behind them. And I feel what we don’t acknowledge in our society is that hate is a well being concern. It’s in all probability the most important well being concern on the earth. So I need individuals to know that, you already know what, it’s time for love. It’s time that we study each other, perceive our variations, perceive our similarities. And I’m hoping that this marketing campaign leads us to have the ability to act with love in the direction of each other.”
