By Katie Kerwin McCrimmon
The retirees were so deep in the closet in their younger years that no one even talked about closets.
That’s because few in their generation ever dared to come out, fearing that acknowledging being gay meant they would lose jobs, be “run out of town” or face violence.
Today, as Colorado lawmakers are legalizing civil unions, President Obama has affirmed gay marriage and even the Boy Scouts are considering revisions to decades of discrimination, many gay, lesbian, bisexual and transgender seniors remain hidden and, as a result, don’t get the health care they need.
A 2011 report from the Institute of Medicine found that far too little is known about the health of LGBT people.
And a 2011 study from the University of Washington about health disparities among LGBT seniors found that nearly one-half have a disability, nearly one-third report depression, almost two-thirds say they have been victimized three or more times, 13 percent have been denied health care or believe they received inferior care, 20 percent do not disclose their sexual identity to their physician and one-third do not have a will or durable power of attorney for health care.
While many older LGBT adults are reluctant to seek care, they face a more grim health outlook than their non-gay peers.
Older lesbians are more likely than heterosexual peers to smoke, be obese and have cardiovascular disease. Older gay and bisexual men are more likely than older heterosexual men to experience poor physical health. And both older gay men and woman are more likely to consume excessive amounts of alcohol than non-gay peers, the University of Washington report found.
A new effort is underway to help gay seniors get better health care. A group called GLBT SUSTAIN, which stands for Seniors Using Support to Age in Neighborhoods, is trying to help seniors who live in Denver’s Capitol Hill neighborhood get services from supportive caretakers close to home so they can age where they have spent their lives. (The group prefers the name GLBT instead of the more common LGBT because more seniors identify with the word gay.)
Advocates with SUSTAIN say that America’s estimated 2.5 million gay seniors are twice as likely to live alone, four times less likely to have adult children to help them and far more fearful of discrimination from health care workers.
“This is a generation that has grown up in the closet,” said Leslie Wright, a researcher with Kaiser Permanente Colorado’s Institute for Health Research. She is working on the SUSTAIN project and also is studying its outcomes as a community-based research project. That means that the idea for the research sprang from the community, not from researchers.
She said the issue became profound for her when she learned about Boulder County’s Project Visibility, which offers training programs so LGBT seniors get sensitive, competent care.
Wright found that even if some seniors had come out, “they were going back into a closet if they had to go into a nursing home. Some of the people who made it possible for me to be out were going back into the closet,” said Wright, a former member of then Denver Mayor John Hickenlooper’s GLBT Commission.
“It’s incumbent upon providers to know (your sexual orientation) or you’re at risk for poor treatment or the wrong treatment,” Wright said.
GLBT SUSTAIN began when Cathy Grimm of Jewish Family Service had been working on helping communities in the Denver area serve seniors so residents could age in their neighborhoods. She then realized that GLBT seniors could be lost and at risk in their own communities. The SUSTAIN group has now received funding from The Colorado Trust and is meeting to decide how to design programs to help older gay adults.
Some seniors like Alice, 75, who is caring for an 81-year-old partner with Alzheimer’s, are hesitant to discuss their sexual preference with their medical providers.
“You don’t know what kind of reception you’re going to get,” said Alice, who asked to be identified by her middle name and not to name her partner. When she visits the doctor, pharmacy or hospital, she simply identifies herself as the “caretaker” and her partner as her “dear friend.”
“Along the way, we have all known people who have lost jobs or committed suicide back in the olden days when it was taboo.”
Alice and her partner have been together for 36 years, but because she worked in the school system, they were too fearful to live together for the first 30. Now, Alice describes herself as “the 24-hour-a-day girl,” caring for her partner who has dementia and can no longer manage the stairs without an automated chair.
Like many gay women of their era (they prefer the term gay rather than lesbian), they don’t have children and therefore have less support as they age. Alice has close relationships with her brother and his children. But her partner long ago became disconnected from her family, a price many gay people have had to pay. Neither woman ever came out to her parents.
While the world has become much more tolerant in the eyes of the young, Alice and many of her gay friends still live with reflexive fear in their bones. Alice grew up in Wyoming where “it was really unthinkable to hook up with a person of the same sex.” In college, she watched women get kicked out of her sorority in Texas for having a relationship. At 23, she quietly identified herself as gay. That meant meeting in secret with a network of women who gathered at Wyoming house parties. Around the country, other gay people frequently congregated at bars where heavy smoking and drinking were the norm, habits that may have harmed their health over time. Gay men suffered the brunt of AIDS, the “gay plague.” Many witnessed the death of countless friends either from AIDS or suicide.
As a professional, Alice kept secrets every day. At her school in the Denver area, she once had a co-worker target her and demand to know about her sexual preference. She ended up being lucky. The school psychologist and her principal ran interference for her and she kept her job. Had they not supported her, she could have lost her career and only means of financial support. She assumed that once she retired, she would be “free at last.”
But these days, when Alice tests the waters, she never knows how people will react. She recently asked a young worker at a senior resource center what kinds of services were available.
“We identified ourselves as lesbians and she said, ‘So what.’ It really struck me that this lady has no clue as to what might happen to us.”
While the young person may have intended the comment as a show of support, Alice is convinced that she and her partner would not fare well in a traditional support group full of straight couples dealing with Alzheimer’s. She’s heard of discrimination in assisted living centers and nursing homes. While many young people might be supportive of gay couples, seniors worry that their own peers might not welcome them.
At her doctor’s office, no one has ever asked Alice about her sexual preference. She likes the idea of a simple form.
“It would be nice to have a line for partner. It would be easier to check a box. I don’t want to have a big conversation,” Alice said.
The greatest support for Alice comes in her neighborhood in Denver’s western suburbs where three same-sex couples live close to one another and lend each other support. It’s the same kind of naturally occurring community that the SUSTAIN program aims to develop on a larger scale in Denver. The women have found a gay handyman who helps them with odd jobs and they belong to a national network called Old Lesbians Organizing for Change. The group holds monthly potlucks along the Front Range that attract about 40 women at each gathering.
Fear about needing health care services and facing discrimination is a frequent topic.
“We know many gay people who are not open to anybody. They’ve never been out of the closet and they don’t tell their doctors. They need help at home. One is a retired nurse and she’s in worse shape than anybody,” said Ann, one of Alice’s gay neighbors, who also asked to be identified by her middle name.
“It’s too much trouble and it’s too scary to be out to anybody,” said Ann, 84, whose partner, Doris (also her middle name) is 80. Ann has known her partner for 60 years and they’ve been a couple for 35 years.
They were also fearful of coming out while working in social service agencies, but once they retired, they became more active in politics and felt they needed to show Coloradans who had passed the anti-gay measure, Amendment 2, that they had friends and neighbors who were gay, lesbian, bisexual or transgender.
“We just decided that we couldn’t be in the closet any more,” she said.
Unlike Alice, Ann and Doris have come out to their doctors.
“We just felt we had to be open because otherwise they don’t’ really know you,” she said. “We want them to not fall on the floor when we say we’re a gay couple. That has changed, partly because of what we’ve done (politically) in Colorado, partly because of TV shows (that portray gay couples).”
Increasing support for gay people stuns these older women. Ann grew up in a small town when an older friend who ran a bookstore was “run out of town” when residents discovered she was gay. Ann never told her parents about Doris. Neither of the women ever had children.
And they’ve experienced discrimination in the health care system. Years ago Doris had to have an operation on her nose.
“I was by myself in the waiting room. I’ll never let that happen again,” Ann said. At one point, there was a complication and nurses raced past her and simply said: “She’s either had a stroke or a heart attack.” It turned out that Doris was fine and had not had either a stroke or a heart attack, but the medical providers kept saying they needed to know who her next of kin was. Ann did not yet have a medical power of attorney and could only say that Doris’ mother was her next of kin and that she lived out of state.
Now the women never leave home without their medical power of attorney forms. And they’ve been pleased with more recent encounters.
During a hospital visit last week, the women discussed their relationship and found a friendly nurse.
“How long have you been together?” the nurse asked.
“Thirty-five years,” they answered.
“That’s wonderful,” the nurse responded. “My partner is in another state.”
For Alice, programs specifically for older gay adults have been critical. The Center, Colorado’s statewide advocacy program for LGBT people, operates special programs for adults over 50 through a program called SAGE of the Rockies.
“I would not have known where to turn when it became apparent that we were going to need some help,” said Alice. Workers at SAGE can tell her exactly who to call to find respite care or how to find a mentor who has experienced Alzheimer’s with a partner.
Wright of Kaiser Permanente said reluctance on the part of gay seniors to speak candidly with providers and demand better care is both self-induced and societal.
“From research we’ve done locally…we’ve found there are providers that really get it. We term them LGBT friendly. Their intake forms are sensitive and ask, ‘Who do you live with?’ Then there’s a middle group that kind of thinks about it, but is not quite sure how to let the LGBT community know that they want to serve them,” Wright said.
A third group of providers thinks that asking patients about their sexual orientation is intrusive and unrelated to giving quality health care, Wright said.
Gay people also receive services that sometimes come through religious programs where it’s unthinkable to ask about sexual orientation.
During interviews with potential patients and providers, an employee doubted that his organization was serving gay seniors when in fact, the organization wasn’t asking.
“Clients that are GLBT are pretty low, I would guess. We don’t target this population. I am aware of only one open GLBT elderly (person). I’m the only GLBT staff. Keep in mind we are part of a Catholic organization…I think the fear factor, fear of self identifying and what that could mean, you know, the stigma is probably why. And being GLBT is not relevant to our program.”
Even someone who is GLBT didn’t understand the need to ask.
Among patients, fear can be overwhelming, said Jessica Retrum, who has been working on SUSTAIN since its inception and conducted research on needs in Capitol Hill and health disparities for the GLBT community in general. Retrum now is a research associate at the University of Colorado School of Public Affairs.
The idea for SUSTAIN first started in late 2008. Advocates began studying the realities for seniors in Capitol Hill. They picked that area since it already had one of Colorado’s largest LGBT populations.
Along with building strong support for seniors there, eventually SUSTAIN aims to be the “go-to” referral service to help GLBT seniors.
One of the biggest challenges is: “how to find the people who don’t want to be found.”
The answer is probably through word of mouth and deep immersion in the community.
“People say, ‘I don’t know that I can trust providers. What if I were to need services? Would they treat me the same or treat me with discrimination?’” Retrum said.
General worries about declining health were also common when she interviewed people:
“When I get to an age when I’m vulnerable and have needs, how am I going to know that I can find someone to take care of me and my partner?” Retrum recalled people telling her.
“They want respect and not to be looked down upon,” said Retrum. “‘Do I have legal rights?’ You’ve been with your partner for years and years and years, yet you don’t know your partner’s family. ‘What kind of legal rights and obligations do I have?’”
Retrum is not gay, but her mother came out when she was a teen and now is happily aging with her partner in a supportive community in Maine.
While times are certainly changing and support for gay rights has improved dramatically in recent years, Retrum says studies show that older people tend to have “an ingrained identity from the way they experienced the world when they were younger.”
In other words, when you’ve spent your life hiding, you continue to hide.