Caregiving in the LGBT Community

When older people in the general population need help with everyday tasks, they most often turn to family. Eighty-five percent of caregivers are family members -- spouses, sons and frequently daughters.

“For us, those people don’t exist,” says Alex Kent, a caregiving consultant at SAGE, an organization dedicated to improving the lives of LGBT older adults. “I'm been asked by several clients for my number to list me as an emergency contact,” says Kent. “For us, those people don't always exist. They don’t have anyone else.”

Nine percent of adults identify themselves as LGBT, according to Caregiving in the U.S., a report jointly released by AARP and the National Alliance for Caregiving. They typically rely for support on their families of choice – a close-knit group of friends, often including an ex-partner. But chosen families frequently involve peers, who are also aging and might need care themselves.

“When you get to the age when you need someone, there aren’t so many someones around,” says Imani Woody, president and CEO of Mary’s House for Older Adults, in Washington, D.C.

LGBT elders are twice as likely to be single and aging alone as the general population, according to SAGE. In addition to alienation from family, they are also three-to-four times less likely to have children. 

LGBT elders are also frequently financially unprepared for advanced age, thanks in part to a history of discrimination-driven lower salaries, according to SAGE. Long denied the right to marry, they have not been able to take advantage of the tax, insurance, and pension benefits that heterosexual couples can.

Eric McNatt

Mermin “toughed it out” as a full-time caregiver as long as she could. Unsure where to turn for help, she found herself isolated and overwhelmed. “We’re from a generation that was not perfectly comfortable being gay,” says Mermin. “We were closeted and afraid.”

The idea of turning to a senior center or other community resource for help provoked lots of anxiety. Wary of how they will be treated, LGBT older adults access support services like senior centers and meal programs, housing assistance or food stamps, at only 20 percent the rate that their non-LGBT peers do, according to Prepare to Care: A Planning Guide for Caregivers in the LGBT Community, a joint publication of SAGE and AARP. “Our generation is uneasy all the time,” Mermin says. 

And they view retirement or assisted living facilities as places where they will likely feel uneasy. “I’ve seen so many people who’ve been living happily out, and they enter rehab or a retirement place, and they’re so vulnerable,” says Kent. “They’re not secure. Even as couples, I’ve seen them introduce themselves as sisters rather than admit they’re lesbians.” 

That’s why Imani Woody is transforming her family’s home into communal housing that will be welcoming to older LGBT adults. From referring to transgender adults by the proper pronoun, to honoring same-sex marriages to educating clients and staff to be respectful of the LGBT culture – all contribute to an environment where LGBT elders can be comfortable, she says.

Mermin and McDermott have been able to remain in their home with the help of local respite care for people with memory loss. And Mermin found a SAGE support group that she calls “lifesaving.” 

“Everyone there is either gay or caring for someone gay,” says Mermin. “Not everyone cares for someone with dementia, but we all feel the same way and share similar burdens.” The group allows Mermin to process her emotions and find practical help.

For Mermin, the challenges of dementia now supersede the struggles of being older and gay. As a caregiver, she says, “you have so many choices you have to make, and you never feel you’re making the right one.” 

Mermin and McDermott are lucky. They have one another. “We’re very close,” Mermin says. “I’ve learned to set aside expectations and be glad for what we have.”