The first time Bob McDonald was "cruised and picked up on," he was near the campanile on the UC Berkeley campus. "I was astonished," McDonald, now 78, recalls about the experience. Back then, the young UC Berkeley literature student was naive and inhibited. Which was understandable, given the times.
It was the 1950s. All across the country people were thrown in jail, institutionalized, beaten, or given electroshock treatment for being gay. Gay bars in San Francisco were raided on a regular basis, with police looking to "de-gay" and rid the city of such "deviant" behavior. McDonald knew not to talk about his attraction to men because "it was just the way things were." It would be another twenty years before psychiatrists ruled that homosexuality was not a mental illness.
That's about how long it took for McDonald to begin living openly as a gay man. He got his master's degree in European literature and art, and was writing art reviews for local magazines by his early forties. He became a curator of art museums and had cautiously come into his own in San Francisco's art world.
"There was always experimentation and exploration, and I think that's what saved me, frankly," says McDonald. "Otherwise, I would be an old fuddy duddy, and in lots of ways I probably still am. On the other hand, I know that I've been liberated and I'm very grateful for that."
But now, at the sunset of his life, McDonald has found himself back in the closet. Since moving into a nursing home in Berkeley, he says he has become isolated and feels pressure to hide his sexuality because of the largely conservative and institutional environment of his long-term care facility.
While McDonald's generation was the first to live openly and achieve equalities in civil rights, it's now experiencing what it's like to age in the health care system. And so far, the health care system's efforts to consider the particular needs of LGBT elders have been woefully inadequate. While California law prohibits discrimination against LGBT seniors in state-funded programs and services, McDonald and others like him still face subtle to outright discrimination. And while not many studies have been completed on the subject, evidence suggests this leads to health disparities.
But things are starting to change. National LGBT organizations like the National Gay and Lesbian Task Force, the National Center for Lesbian Rights, and SAGE (Services and Advocacy for Gay, Lesbian, Bisexual, and Transgender Elders) are working to promote LGBT senior rights, and have gotten groups like AARP and the American Society on Aging to consider this population in their efforts. The nation's first affordable housing development for LGBT elders, Triangle Square Hollywood, opened its doors in Los Angeles in 2007. A similar project is underway in San Francisco to build affordable housing for LGBT seniors. Meanwhile, in Santa Rosa, the construction of the first LGBT-specific retirement community with continuing care services is in its final stages.
Locally, organizations such as Lavender Seniors of the East Bay have advocated on behalf of this vulnerable population for close to two decades. They've made considerable strides, giving cultural competency training to caregivers and providing gay seniors with a space to socialize and feel connected to their community. But with shrinking funds and unenforceable policies, such efforts have limited reach.
Meanwhile, seniors like McDonald find that their old instincts are kicking in. They've learned to hide and keep quiet.
"I don't know that I'd stand up here and say, 'Hey everybody, I'm gay,'" said McDonald, as we sat outside his nursing home on Ashby Avenue. "I think that people here, a lot of them would say, 'What's that mean?'"
Part of the problem is that we know very little about LGBT seniors — their fears, the extent of their health needs, and how to begin to address them.
Currently, no national health data exist to keep tabs on the size of this population or adequately assess their particular health needs. The National Health Interview Survey — the most referenced federal health survey — doesn't include lesbian and gay people, much less seniors. The lack of evidence-based research has resulted in little to no funding from federal and state governments toward LGBT-specific programs or education. According to Outing Age 2010, a recent report by the National Gay and Lesbian Task Force, "due to a lack of commitment by federal and state governments to study LGBT people, the specific vulnerabilities of LGBT elders are hidden from view and thus impossible to address."
But recently, the lack of awareness has begun to change as national advocacy groups have stepped up efforts to measure health disparities among LGBT seniors. In the last few years they have released groundbreaking reports that begin to paint a portrait of who these seniors are and what their needs and experiences are. Outing Age 2010 found that LGBT people are vulnerable to certain health problems: Lesbians face higher risks for drug and alcohol addiction, cancer, and obesity, while gay men have higher risks for HIV/AIDS and drug and alcohol use. Male-to-female transgender people are also at higher risk for HIV/AIDS.
Anecdotal evidence suggests that lesbian and gay seniors can end up in nursing homes prematurely. They're less likely than heterosexual seniors to have the family support that would otherwise help them age at home. Once in long-term care facilities — nursing homes, senior centers, retirement communities — they're also more vulnerable to isolation, depression, and elder abuse, according to Outing Age 2010. During intake, staff members often assume the senior is heterosexual, asking if she or he has children or a spouse to rely on. The lack of awareness can subtly create an unwelcoming environment. Many LGBT seniors in long-term care facilities continue to hide their sexual orientation for fear of being mistreated.
At the heart of the problem, say advocates, is that no one ever thought of gay and lesbian people getting old. "In a nursing home, where you have this tightly controlled environment, staff there are really not set up with the idea that 10 percent of their clients are most likely gay or lesbian," said Dan Ashbrook, executive director of Lavender Seniors of the East Bay. The overall LGBT senior population is estimated to be at 5 to 10 percent.
Indeed, an informal phone survey of a dozen nursing homes in the East Bay found that many facilities lacked awareness of LGBT seniors. Responses to the question, "How many LGBT seniors do you serve?" ranged from "Unknown" to "What is that?" to "We don't dwell on it" — and that was from the staff who were willing to talk.
That lack of awareness can lead to health disparities that advocates know exist, yet are difficult to prove. Because of that nagging fear of being mistreated for being gay, LGBT seniors don't always disclose details of their health. This can limit the quality of care they receive.
"We shut down," said Ben Barr, executive director of the Rainbow Community Center of Contra Costa County, a group that provides services and activities for the LGBT community in that county. "'All right,' the person thinks, 'this is a situation where I'm not going to be treated with respect.' So it's more likely they're not going to say, 'I haven't had a bowel movement in three days,'" said Barr.
Advocates have also documented instances of outright discrimination, sometimes leading to heartbreaking outcomes — such as transgender seniors who are segregated from other residents, same-sex partners who are separated or denied visitation rights, and even worse.
In one instance about a year and a half ago, Barr said a senior who frequents the Rainbow Community Center's senior lunches had to move his partner of nearly forty years into a small board and care — typically, this kind of facility is family-run and more affordable. His partner had been diagnosed with Alzheimer's. One day as he was hugging and kissing his partner, a staff person walked into the room.
"The staff decided that the healthy partner was molesting the other partner and reported him to the state," said Barr, noting that management went so far as to try to have the healthy partner's benefits taken away. Barr said the healthy partner managed to stop the complaint.
"If this had been a heterosexual couple, a wife hugging her husband, they wouldn't have set off alarm bells," said Barr.
Which points to other challenges same-sex couples confront. Unlike heterosexual married couples, who can keep their home and assets when one spouse goes into long-term care, same-sex couples don't enjoy the same benefits and can lose their home to cover the costs of assisted living.
In one particularly egregious case a few years ago in Sonoma County, an elderly gay couple was separated by county employees after one of them fell in an accident, even though the couple had executed both mutual powers of attorney for medical and financial decisions and wills naming each other as beneficiaries. Officials then unlawfully auctioned their possessions, terminated their lease, and forced the other partner into an assisted-living facility against his will, while preventing him from visiting his partner of twenty years before he died. A lawsuit brought by the surviving partner against the county was settled last year for $650,000.
Ashbrook points out that the move into assisted living can be harsh for any senior, gay or straight. Seniors, in general, are a group that tends to be overlooked and underserved. But these examples show that for older adults who are gay, lesbian, bisexual, or transgender, the transition into a long-term-care facility can be completely disarming.
One way to look at it, explained Ashbrook, is that "just like society, long-term care facilities are set up without considerations for gay and lesbians. It's very similar to marriage law and Don't Ask, Don't Tell."
Bob McDonald is a charming and likeable man. He speaks quite properly, but is also surprisingly candid. Bushy eyebrows adorn his face, rising and falling over expressive blue eyes. There are few things he likes to do more than to listen to classical music on his Discman. It's one of the few things he can still do for himself.
Reclined against a couple pillows, McDonald slides his hand through the back handle of the round portable device. He puts on his headphones, shuts his eyes, heaving a huge sigh. He lets the melodies of Johann Sebastian Bach transport him to a time when he was young and a lot more able.
These days, it's painful for him to lift his tall frame out of bed and hunch over his walker. And it's been just as painful to lose an important sense of self.
After the epileptic seizure that landed him in a string of nursing homes two years ago, McDonald went back in the closet. He kept mostly to himself — reading, listening to NPR on his small clock radio, and eating his meals alone.
He didn't talk about his sexuality, at least not to those immediately around him — not to his physician, the nurses, or his roommate. When asked about his wife and children, he would say that he didn't have either and blamed it on an inability to have sex.
"Which is cheating, and it still bothers me, because it was not an honest answer. I should say, 'Well, my adult life I've been gay,'" said McDonald.
He chose not to disclose his sexuality for fear of what the staff would think of him. Although there are elements of truth wrapped up in his little white lie. He contracted colon cancer in his early forties, just when he was getting used to the idea of living openly gay. The doctors successfully removed his tumor, but the operation killed his bladder, and his ability to have sex went out the door, too.
McDonald speaks matter-of-factly of the pouch that protrudes from underneath his white hospital gown, on the right side of his stomach. "It holds the excreta," he explains as we sit across from each other in his room on a recent visit. He has just finished a dinner of scrambled eggs. A large hardcover book on Socrates sits prominently next to the food tray. He points to the thin tube sliding down from between his pale legs. "That's where the urine goes."
"It's a struggle to live," he says.
The one thing that has kept McDonald afloat, in mind and spirit, has been an intermittent connection to the outside world.
The loneliness and isolation that LGBT seniors face in 24-hour care is one of the biggest challenges to their overall well-being, say advocates. Dan Ashbrook calls it "isolation by culture." Organizations such as Lavender Seniors of the East Bay have addressed this problem by creating friendly visitor programs — that is, they match volunteers with gay seniors like McDonald, who have no family, live alone or in a long-term care facility, and could use a friend who's like them.
Over the past three years, as McDonald has transitioned from living in his own apartment to residing in nursing homes, Ashbrook has partnered McDonald with a handful of volunteers who've taken him out for lunch, to run errands, or accompany him to the Whole Foods Market on Ashby Avenue. McDonald says he enjoys catching a glimpse of the "eye candy" strolling down the aisles.
But of all the volunteers — which McDonald says he is very grateful for — no one has meant more to him than River Lebow.
"Bob's a very outgoing, gregarious gentleman," said Lebow, acknowledging the affection that has grown between the two.
"We have a lot of fun checking out sexy men," said Lebow. "That we can share the pure joy of looking at something that is beautiful and the camaraderie, it's been continually fun."
Lebow, 60, is a hospice nurse by profession. Over the years he's worked with people who are dying in their homes. He says he understands what McDonald is going through and was there for him when he moved first into a board-and-care and then into a nursing home. But in the last couple of months, Lebow has seen McDonald at his worst. His health has deteriorated, in part due to old age and in part to the isolation that awaits him each time he enters the senior home.
"Yesterday was the most depressed I've ever seen him," said Lebow, who tries to encourage McDonald to get out of bed and at least stroll around the neighborhood.
"He's talked for months about wanting to just move on," said Lebow. "He wishes he could just end his life by some stroke of the cosmic clock."
In the time since I first met McDonald, he's fallen two times in the shower. He also suffered a mild stroke. He's had to permanently replace his cane with a walker. He doesn't feel up to going out on his friendly visits as much.
"All it takes is depression, leading to lack of moving, leading to muscle deterioration, and then it's just downhill," said Dianna Garrett, the planning director at the Center for Elder's Independence, an adult day care center in Oakland that promotes holistic well-being. "Without understanding what's meaningful to a person, it's hard to address their needs and keep them resilient."
Once a month, Marin County's Section on Aging invites speakers to discuss topics related to improving the health of older adults. On a recent Thursday morning at the assisted-living facility AlmaVia of San Rafael, Paula Pilecki was sharing the best practices for serving LGBT seniors to a room full of senior health care providers.
"We're not pulling people out of the closet, by the way. That's not what we do," said Pilecki, who's the director of Spectrum, an LGBT center that serves the gay community in the North Bay.
Despite the work that local advocates such as Pilecki have done for the past two decades, it's only in the last five years that policies have been enacted in California to ensure that health care providers receive this kind of information.
In 2006, the Older Californians Equality and Protection Act was amended so that programs and services for older adults take into account the needs of LGBT seniors. This could be in the form of trainings for staff and volunteers or developing needs-assessment plans that include LGBT seniors; as well as ensuring they're not being discriminated against. A tougher piece of legislation was passed two years later, mandating that staff at 24-hour care facilities receive cultural competency training.
The problem with both policies, however, is that they're unfunded mandates. Most facilities don't have the financial means, the time, or the disposition to implement such measures. This represents one of the main challenges advocacy groups face.
"We're having difficulty trying to go in and say, 'You have to do this training,' because nobody is going to hold the long-term care facilities accountable," said Dan Ashbrook.
There is also the issue of staff turnover. Advocates have found that, left on their own, facilities do not continue cultural competency training when new staff members come on board.
Meanwhile, there's only so much that cash-strapped advocacy group can do. Ashbrook, who's the only paid employee at Lavender Seniors, says his organization may carry out six to fifteen trainings a year, but it depends on the funding, which is difficult to come by these days, especially for elder care programs. It also depends on his time, split between trainings, coordinating senior lunches, networking with administrators in long-term care facilities, and running a friendly visitor's program.
In Alameda County, attitudes toward gay seniors are slowly beginning to change across the health care spectrum, from county administrators to skilled nurses and on down to residents.
A year ago, when the California State Department flagged LGBT people as one of the five groups with the largest health disparities, Gigi Crowder knew it was time to act. In her roles as ethnic services manager for the Alameda County Behavioral Health Care Services, an agency that contracts with organizations throughout the county to provide direct health care services, she launched a campaign to reach out to LGBT advocacy groups. The plan was to offer a grant to an organization that could help them begin to assess the needs of LGBT seniors locally.
"We're trying to cater to communities that we have not done a good job in addressing," said Crowder. "And it's kind of embarrassing that we, having the largest population of lesbians over any other community, haven't done much."
The grant — the first of its kind — went to Lavender Seniors for its proposal to carry out an LGBT elder needs-assessment project, one that would track the needs of local LGBT seniors as well as give a sense of staff awareness. The result was a landmark study of Alameda County.
Ashbrook partnered with Center for Elder Independence, an adult day care center, and Salem Lutheran Home, a retirement community in Oakland. Ashbrook had standing relationships with these facilities and knew they were receptive to gay seniors.
The results showed that work still needed to be done to raise staff awareness on the needs of LGBT seniors, as well as the policies that exist to protect them. But it also found that respondents, both staff and residents, showed a positive attitude toward LGBT seniors.
The majority of staff respondents said they felt comfortable working with LGBT patients, with only a small percentage — 1 to 8 percent — reporting they would feel uncomfortable. In the process, some staff came out as gay.
At Salem Luther Home, 97 percent of the residents who answered the survey said they think the facility should be inclusive and welcoming of LGBT seniors.
"People are opening up and learning to be more welcoming and understanding that others might be different," said Gilbert Carrasco, the executive director of Salem Lutheran Home, who noted that without the grant, the agency would not have been able to carry out these efforts themselves.
"Personally, I had my reservations in doing the survey at first, because I am gay," said Carrasco. "I would never try to force a community to do something they are not ready to do."
With such positive outcomes, Carrasco said Salem Lutheran Home would take the next step in continuing LGBT education. Trainings and workshops are in the works for both staff and residents.
Ashbrook and other advocates have found that having gay staff is key to beginning this dialogue, and they become important advocates within the facilities. These personal connections can make a world of difference to gay seniors and are what have allowed for such strides to take place.
For the last two years, P.A. Cooley, the admissions manager at Chaparral House, has kept a close eye on the list of elders waiting to be admitted into the five-star skilled nursing facility in Berkeley. The home has room for up to 47 seniors, but has only 12 beds available for seniors with Medi-Cal. On any given month, the list can be nearly one hundred names long.
A few weeks ago, Bob McDonald's name had inched its way to the top of the list. Cooley had worked on his behalf to make sure of that.
"I get dozens of calls a month from Medi-Cal applicants looking for rooms. I put Robert on this waiting list. He stood out in my head," said Cooley.
When Cooley first saw McDonald "toddle" — as he puts it — through their doors two years ago, he took an instant liking to him. Cooley, who is openly gay, recalls they had a good time getting to know each other. But what struck him more about McDonald in that initial encounter was his steadfastness. With a cane in one hand and his mind made up, McDonald had somehow managed to walk on his own from his nursing home on Ashby Avenue to Chaparral House, located several blocks away on Allston.
"I was amazed," said Cooley. "Residents of a skilled nursing facility don't go traveling about on their own. Typically they're too frail, or require a nurse."
At the time of McDonald's first visit, there was no room at Chaparral. But he continued to visit Cooley to inquire if any beds had become available. Each time Cooley shook his head. McDonald's name was low on the waiting list. After each visit from McDonald, however, Cooley would approach the facility's chief financial officer and ask if they could make this one exception. But with the state's budget cuts, another Medi-Cal resident would cost them money.
"After a while my administrator and the CFO began to see that this particular case mattered to me," said Cooley. "My CFO greeted me one morning with, 'How do you like surprises?' He told me I could call 'my gentleman' and let him know that we had a bed for him."
McDonald had come to Chaparral on the recommendation of River Lebow, the volunteer from Lavender Seniors. As a hospice nurse, Lebow has made rounds at various long-term care facilities and thought Chaparral would be a good place for McDonald. Dan Ashbrook agrees; he refers gay seniors there because it's a facility that's welcoming of this population.
"This agency is pretty competent and they're showing they're making a commitment," said Ashbrook.
Since arriving at Chaparral in late July, McDonald has adjusted well to life there, says Cooley. But he says that McDonald has grown more lethargic since he first met him. So Cooley makes sure the activities department has opera and symphonies, as well as art books and magazines, available for McDonald. He nudges him out of bed and reminds him that he is more cognizant and physically able than most residents and that he should take advantage of the life he still has.
Best of all, Cooley says McDonald is no longer "particularly fearful or secretive about being gay." McDonald says he still tends to avoid the topic so as to not make others uncomfortable, but that with certain people — like Cooley — he feels at ease talking about his sexual orientation.
"I think it gives him a sense of security knowing that I'm around," said Cooley. "It doesn't matter how amazing a nursing facility is, residents still need an advocate looking out for them."
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