On one of her many days in the hospital in 2017, Cathy asked her partner not to tell the nursing staff they were married. She’d been diagnosed with a rare form of leukemia, and Cathy feared the care she got would suffer if the staff knew she was a lesbian.
“She says, ‘Don't tell the nurses that we're married,’” said Cathy’s wife, Esther Lucero. “And I said, ‘Why?’ And she says, ‘Because they're treating you differently. They're treating me differently.’”
According to a study recently published in The Gerontologist, older people who are lesbian, gay, bisexual, transgender or queer often face discrimination during end-of-life care. They’re also more likely to have their health care wishes ignored or disregarded.
Many LGBTQ seniors go back into the closet because of a lack of family or social support in health care, assisted living and hospice facilities.
In the hospitals, Lucero initially told health care staff that Cathy was her wife. She said some responded well, while others seemed off-put. And that bothered Cathy. Looking back, Lucero said she thought they were treated differently at times because they were gay. One nurse seemed to avoid Cathy’s room. And sometimes others would wait for Lucero to leave before telling Cathy details about her condition.
“I was hurt,” Lucero said. “We had waited so long to be married. And to me, it was like, ‘Hey, I'm married to her.’ And it just hurt. I don't even know how to say it. I know I cried that night.”
Lucero met Cathy in 1980 while they worked together in Denver. At first, they were friends.
“It was nothing at the beginning,” Lucero said. “But she told me, ‘The first day I met you, I said I want to spend the rest of my life with that girl.’”
After a few years, they started dating. Then they moved in together and bought a house. In 2015, they got married. But a couple years later, they both got sick with what seemed like bad colds. Lucero improved, but Cathy got sicker. After a few trips to the hospital, a doctor finally discovered Cathy had T-cell prolymphocytic leukemia. She died six months later at age 63.
The loss devastated Lucero, who had few places to turn for support. CPR News agreed not to use Cathy’s last name because Lucero said she was very private about being a lesbian. Lucero said they never held hands or kissed in public. Their families knew they lived together, but some thought it was just as roommates. Other relatives refused to discuss or accept that they were in love. They’d also kept their relationship a secret from a lot of colleagues and neighbors.
That’s common for older LGBTQ adults, said Carey Candrian, an assistant professor and researcher at the University of Colorado. And many feel isolated, she added.
“And I just get chills when I say that, because I think for people who don't identify as LGBT, I think it's so easy to forget the work that hiding requires,” Candrian said.
During her early research, Candrian shadowed a hospice worker at a potential patient’s home. The worker asked the woman questions from a form, like: Are you married? Do you have children? Who cooks for you? Who cleans?
The woman said she was not married and had no children. She pointed out her roommate, who was in the room, and said she made the meals, cleaned the house and took care of her. After the hospice worker left, Candrian interviewed the women. She revealed that they were more than roommates — they’d been in a romantic relationship for 28 years. That’s when something clicked for Candrian.
“So much of it could have changed through the talking and listening,” she said. “I really became deeply committed to improving health equity and really improving the way we communicate, the way we talk and listen to older LGBT adults, knowing that it really can make a measurable difference in the care they receive and in their outcomes.”
One study, from the Columbia University Mailman School of Public Health, found living in highly stigmatized environments can result in a shorter life expectancy of around 12 years for LGBTQ people.
Candrian said the challenges these seniors face fall into three categories: economic insecurity, lack of family or social support, and a lifetime of enduring stigma. But there’s also a lack of data. Hospice and senior care facilities often don’t ask about specific demographic information like sexual orientation or gender identity, known as SOGI data.
“It's really hard to meaningfully address disparities because we're not able to know what's happening to this community from a data perspective,” she said. “Which means we're not really able to ever develop interventions that are specifically tailored for this population.”
Candrian is working to train staff at six facilities around the Denver area run by the nonprofit Christian Living Communities. The goal is to make them more aware of LGBTQ seniors and provide a safe space for them to be more open as a way to change the culture.
One of those facilities, Dayspring Villa, started what it calls an “LGBT Plus Friends Group” as a way to make those residents feel welcome.
“The vast majority of people who are LGBTQ, who look for senior living, go back into the closet in order to feel that they won't be discriminated against or so that they'll be accepted by their neighbors,” administrative coordinator Stormie Foust Maley said.
During the first LGBT Plus Friends meeting, Foust Maley was surprised to see one resident in particular. She said the man was more reserved and opinionated than other residents, and she worried he might be there to express discontent with the group.
“He shared a deeply moving story about how he was gay, and he had to fight a dishonorable discharge from the Navy and hadn't felt accepted by his parents,” Foust Maley said. “He had like marched in the streets for equality, and I had known this man for five years and I had no idea. I thought he was there to start trouble, and he needed it more than anyone.”
When they surveyed LGBTQ residents about how to make a more inclusive environment, Foust Maley said the number one request was the ability to identify as LGBTQ and be affirmed and accepted by the staff that they told.
With support from a Colorado Health Foundation grant, the staff is working to make that a reality by creating a video that focuses on LGBTQ competency training from the nonprofit Sage. Foust Maley hopes this leads to more of these seniors getting proper care and equal treatment, she said.
“And if we can help make this process easier for other people or inspire other people to do this work, it's a lofty goal, but that would be amazing.”
Reynaldo Mireles, director of elder services for Sage of the Rockies, a local chapter, said improving communication and data collection is only the first step.
“We're not going to stay in the closet,” he said. “I want people to really know that they matter and that those closet doors need to be wide open and left wide open.”
Mireles thinks a lot about what it will be like when he and his husband are older and looking for senior community or assisted living. And those places need to be welcoming to diverse communities, he said, which will take a nationwide effort to ensure better protections for LGBTQ people, especially seniors.
“We need to educate policy makers about LGBT aging issues,” he said.