The isolation of dementia

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Bridget Coll stares at me blankly when I walk into her living room. “Who are you?” she asks. Her unblinking gaze is not unkind, merely uncomprehending.

She doesn’t remember the many times we’ve met at community events or through her work as a quiet advocate for gay immigration rights. She doesn’t remember the kind words she’s made a point of sharing with me, and so many others, over the years.

I gently jog her memory, then ask her if she still wants to do the interview. “If it helps someone else,” she replies, true to original form.

She’s nervous, though, fiddling with the zipper on her red windbreaker as she sits on the couch next to her partner of 37 years, Chris Morrissey. Being interviewed is unfamiliar, and these days familiarity is a great comfort.

It’s easier to remember childhood memories than what happened yesterday, she explains, slowly.

“What happened yesterday?” I ask.

“I don’t remember.”

Some memories come more easily, like her address and phone number, which she rattles off without hesitation. And it’s Thursday, so she knows she’s going to the Britannia Community Services Centre soon for its seniors’ lunch, which she enjoys.

Other times she asks Morrissey to help her find their bedroom.

In July 2012, Coll, then 78, was already experiencing some memory loss but was still capable of single-handedly planning and executing her annual trip home to Ireland. This year, she needed Morrissey to make the trip with her.

Her siblings didn’t dwell on her dementia. “They treated me the way they always do,” Coll says, with a hint of a smile. “Like a celebrity.”

“Are you the baby of the family?” I ask.

“I’m the beginning of the second half-dozen,” she replies, without missing a beat.

She remembers some things clearly: the white-handled knives of her childhood, the new potatoes her father uncharacteristically dug up early for her as a treat during one visit home, the water cannons turned on her as she stood side by side with Chileans protesting the torture of the Pinochet regime in the 1980s.

She remembers the moment she knew she could no longer be a nun — when a letter arrived from the home convent in England about plans for its annual garden party, as the people around her struggled to survive. “It was in conflict with the things I thought were important,” she says clearly. “I was going to be on the streets protesting in Santiago and they were going to a garden party.”

She remembers the moment she knew that Chris was the one for her. “My parents died within three weeks of each other,” she recalls. “I was a nun at the time. I got letters saying I should be happy because my parents were in heaven. When I met Chris, she was the first person to ask me how I felt, rather than telling me how I should be feeling.”

But more recent memories are elusive. “When did you first realize you have dementia?” I ask.

“I don’t know.”

“Does it bother you to forget?”

“Sometimes I ask Chris if I’m crazy.”

“Does it feel crazy?”

“Sometimes it doesn’t feel real.”

It’s easier to have a fixed schedule, she says, “because it’s real. I know that it’s real.”

Dementia wasn’t a diagnosis that she and Coll had ever contemplated, Morrissey says. “I mean, we had made wills, talked about funerals; we both know we want to be cremated. But we never got to the part of … how our death might look like, what might lead to our death.”

Morrissey says she began to notice the changes in Coll about a year and a half ago. First, a greater level of forgetfulness, then some difficulty following conversations. They went for a first round of memory tests, but the doctors didn’t seem too alarmed and told them to come back in a year. They knew they couldn’t wait that long.

“The day the doctor said, ‘You have dementia,’ we came out, we didn’t say anything, we just walked down the street holding hands, and Bridget asked me, ‘Do people die of dementia?’ And I didn’t know how to answer that.”

“I have a sense of loss, a sense of grief,” Morrissey says quietly. “I’m not a person who’s good at going to that sort of feeling level — and I think to a great extent that’s what got me through a lot of things in life. But when I allow myself, I do have a sense of grief and loss.”

Coll’s dementia has significantly altered their relationship. She’s not really present as a partner anymore, Morrissey admits reluctantly. “In the sense of there’s no shared decision-making. Even companionship, because she gets very tired … so in the evenings I’m usually here by myself.

“I mean, she’s very connected to me in many ways, and I to her, and there’s very tender moments. But in terms of day-to-day living … her needs are so very different from mine.”

The phone rings for the third time and Morrissey picks up, advocating for Coll’s admission into another adult seniors’ day program for people with dementia. Finding spots in the city’s limited support programs can be difficult; finding gay-specific programs has, until now, been impossible.

So far, the couple’s experiences with mainstream support services and home-care assistance have been gay-friendly and even welcoming enough. (“Except I got something in the mail that said ‘Mrs,’ which bugs the hell out of me,” Morrissey says. “Or ‘Mr,’ for heaven’s sake!”)

But Morrissey remembers her hesitation when she dropped Coll off for the first time at the Lion’s Den program. She says she took a deep breath before kissing her partner goodbye in a room full of presumably straight people — “with no sense of how it’s going to be, for me or for her.”

Morrissey kissed Coll on the lips that day and has each time she’s dropped her off since. “But it’s that constant … I don’t know what people’s assumptions are. I always assume that they don’t recognize us as partners. I don’t know if that’s true or not.”

When Patrick Tham joined a caregivers’ support group through the Alzheimer Society two years ago, he couldn’t quite relate, either.

As a gay man and adult child of someone with Alzheimer’s, he couldn’t connect to the husbands and wives sharing their experiences in the general group he first joined. Finding a group specifically for people with parents with dementia made a big difference, he says, which is why he encouraged the society to launch a support group specifically for gays and lesbians caring for their partners.

“That’s not to say that people haven’t been welcoming” in the general support groups, he says. The Alzheimer Society of BC has “done a lot for my family.”

But gay couples’ needs are different, he maintains. Their experiences are different; their conversations will be different.

Coping with dementia is hard enough, he notes. People shouldn’t feel the need to potentially hide part of themselves or remain silent because they feel there’s too much to explain.

The Alzheimer Society’s new LGBTQ support group will run monthly starting in January, confirms Kara Turner, the organization’s support and education coordinator.

Turner’s not quite sure of the need or interest in the community, but she’s determined to launch the group and is confident it will grow. “It just sort of came together,” she says.

Morrissey welcomes news of the group’s launch. She’s been pushing for a local, gay-specific group for months.

Until now, she has felt fairly isolated in the community, disconnected from other gay and lesbian couples dealing with dementia. She and Coll know just one other lesbian couple in a similar situation, and she appreciates their biweekly get-togethers as much-needed opportunities to share, and sometimes to laugh together.

“Where the hell are all the others?” she asks. “I mean, we’re all aging. Where the hell are they?”

“We’re powerless over the disease, so at least if there was some sense of community,” she says.

“It would be great if some of us could find each other, so we can have something that’s specifically ours.”

“Can we go to Dairy Queen now?” Coll asks, reemerging from the bedroom, where she’s been resting.

“Yes, we can go to Dairy Queen now,” Morrissey smiles at her, and takes her hand.

To register for the Alzheimer Society of BC’s free LGBT dementia support group, contact Kara Turner at 604-675-5153 or kturner@alzheimerbc.org. To contact Chris Morrissey, email chrismrrss42@gmail.com.