As health falters,seniors face stark choices
by Matthew S. Bajko
Having been diagnosed with Parkinson's disease, Bernard Mayes was confronted with a stark choice. Should the fiercely independent gay man move into a senior assisted living facility?
Or was it feasible to hire caregivers so he could remain in his home in San Francisco's Bernal Heights neighborhood? At the time, he was living with a younger gay male couple he helped introduce while living on the East Coast and later presided over their wedding.
"You deteriorate until you become incompetent. My friends and I decided I should be in permanent care," said Mayes, 84. "I couldn't go it alone."
One of his former housemates, Matthew Chayt, recalled, "It was a process of several years where we all sort of struggled with what was the right thing to do."
Chayt, 37, first met Mayes when he enrolled at the University of Virginia in 1995 and was assigned Mayes as his faculty adviser. At the time, Mayes chaired the Communications Department at the school, where he was first hired in 1984 to teach English.
Years later, while both were living in Washington, D.C., Chayt attended a party Mayes co-hosted with his friend, Will Scott. Chayt and Scott ended up falling in love, and when Scott, an Episcopal priest, was hired to work at Grace Cathedral, they convinced Mayes to move west with them.
Mayes had lived in San Francisco once before. Shortly after arriving in the U.S. from Britain in the late 1950s, Mayes, an ordained Anglican priest, was hired by the Diocese of California to oversee a parish near the city.
He founded San Francisco Suicide Prevention, and later, having worked for the BBC as a journalist, he founded KQED-FM and served as the executive vice president of KQED-TV in San Francisco. He would go on to be a co-founder and the first working chairman of NPR prior to his academic career.
In an interview last fall with the Bay Area Reporter , Mayes acknowledged that he had never planned out his golden years or contemplated being unable to live on his own until later in life.
"It is something we hold off for ourselves until we need to do something," he said. "The question is is it better off being by yourself or in a community. A community, though, has rules, which doesn't sit very well with me. I like to be independent."
Chayt and Scott, now 34, pondered at first if they could serve as caregivers for Mayes. But with each at the start of their careers, they determined such a scenario wasn't feasible.
"We feared we just wouldn't be able to be there for Bernard," said Chayt.
So the trio began looking into what assisted living facility would best suit not only Mayes's health needs but also his personality and lifestyle. They looked at various places around the Bay Area.
"I don't think there was anything particularly wrong with the options we saw. But I do wish there had been more," said Chayt, adding that they were also concerned about finding a place that was welcoming to LGBT seniors. "I think Bernard has lived most of his life so far, and will continue to do so, very open and, quite rightly, being unapologetic about being gay and being himself in other ways."
Scott also recalled being surprised at the lack of assisted living facilities specifically tailored for LGBT seniors.
"I was expecting there to be more options in the Bay Area for LGBT seniors," said Scott, who also first met Mayes while in college. "There were some but we need more. If there is any place in the world gay folks in old age would want to be, this seems like the place to be."
Although facilities outside the city were less expensive, they would have been too far from Mayes's support network and social life in San Francisco.
"He himself wouldn't like to be away from the city. And we knew the farther out of the city he was, we would see him less often and he would be socially isolated," said Chayt.
In the fall of 2012 Mayes opted to move into the Heritage, a retirement community in a Julia Morgan-designed building in the city's Marina district. Operated by the nonprofit San Francisco Ladies' Protection and Relief Society, the Heritage also has a 32-bed on-site health center for residents who require more specialized health care.
"I still don't know if it was the right decision to make. There are all women here," said Mayes. "It is an excellent location right near parks with views of the Golden Gate Bridge. But it is a long way from the center of the city."
He still wishes he could have remained in his Bernal Heights home, which he would have done, said Mayes, but didn't because "I couldn't walk up the hills."
Mayes is not alone in preferring to live out his life in his own home. Many seniors, whether LGBT or straight, do not want to move into retirement communities or facilities.
"They want to age in place and be with the friends they have always been with," said Hilary Meyer, director of national programs at SAGE, short for Services and Advocacy for Gay, Lesbian, Bisexual and Transgender Elders.
Location has been an issue for Fountaingrove Lodge, an LGBT-focused retirement community in Santa Rosa roughly an hour north of San Francisco. Since it opened its doors last November, the facility has found it can be a hard sell among those LGBT seniors already living in gay-friendly cities such as San Francisco and Palm Springs.
"Yes, we have run up against some barriers in places, San Francisco being one of them, because it is such a great community there for LGBT people," said Chris Kasulka, the president and CEO of Oakmont Management Group, which operates the 77-unit Fountaingrove Lodge as well as a companion 22-unit facility called the Terraces for seniors, both LGBT and straight, who need more specialized care for memory impairments or Alzheimer's.
The lodge is now at 65 percent of capacity, with the majority of residents coming from northern California and the Bay Area, said Kasulka.
The company has not made any plans to open additional retirement communities focused toward the LGBT community. But if it does, Kasulka said, Oakmont would look at acquiring property closer to gay neighborhoods in major cities such as San Diego and San Francisco.
"I think people are really ingrained into their local community, like the Castro or Palm Springs, where their family is, their extended family is, and the people they know are," she said. "If we want to capture those residents and provide services to them, we may have to come to them versus them coming to us."
There is a growing need for more LGBT-focused retirement communities throughout the country. An estimated 3 million LGBT seniors aged 65 or older are currently living in the U.S. and that number is expected to double by 2030. In San Francisco it is estimated there are upwards of 20,000 LGBT seniors age 60 or older currently living in the city.
A 2013 survey of 616 LGBT city residents aged 60 to 92 years old found that slightly less than 7 percent were living in senior housing, assisted living facilities, nursing homes, or an age-restricted community. Respondents who were 80 or older were more likely to be living in such retirement communities than their younger peers, according to the survey results.
"LGBT seniors are more likely to require facility-based care than straight seniors because they are less likely to have informal caregivers available to help them remain in their homes," according to the report issued last month by San Francisco's LGBT Aging Policy Task Force, which had commissioned the LGBT seniors survey.
In addition to concerns about losing their independence, LGBT seniors also worry they may face anti-gay discrimination in a retirement community or assisted living facility and be forced back into the closet.
"LGBT seniors are reluctant to access long-term care facilities for fear of discrimination," said task force member Marcy Adelman, Ph.D., who co-founded the LGBT senior services agency Openhouse.
To ensure facilities in San Francisco are meeting the needs of their LGBT residents, the aging policy panel has recommended that the city adopt an ordinance to ensure LGBT seniors in long-term facilities receive "appropriate care and treatment" and require licensed-care facilities to have a dedicated LGBT liaison among its staff members.
In its report, the task force noted, "the city has a significant opportunity to innovate and lead in demonstrating how LGBT seniors should be cared for in long-term care facilities."
"Once you rely on a long-term care system and it becomes unsafe and unwelcoming, that is a problem," said Robert Espinoza, SAGE's senior director for public policy and communications.
As he visited various facilities, Mayes said he made a point not only to be out but also to inquire if a facility had other LGBT residents.
"It was a very important aspect of the whole search. I insisted they be gay-friendly at least," he said. "They were all uniformly supportive but ignorant as to how many they had."
The people he has meet at the Heritage have been pleasant, said Mayes, but so far he has not encountered any other LGBT residents, though he suspects there are a few.
"There are people who are but they are terrified to reveal it. People in their 80s lived through a lot of homophobia," said Mayes. "It is very difficult, even now, to broach the subject."
One of the biggest adjustments for Mayes has been being assigned seating for meal times and sharing a table with the same people for three months at a time.
"As a person who has been very independent all my life, I find that very difficult to bear," said Mayes. "Still, the biggest concern for me is losing my freedom. Groupiness is what I fear most."
Matthew S. Bajko wrote this article through the MetLife Foundation Journalists in Aging Fellowships, a program of New America Media and the Gerontological Society of America.