LGBTQ Pride Month

LGBT Elders And Caregivers Face Unique Challenges Not Often Talked About. One Organization's Working To Change That.

“It takes a special person to be a caregiver. They give up a lot, and they need to be reminded to take some time and space for themselves.”

While lesbian, gay, bisexual and transgender (LGBT) youth culture continues to gain momentum in the spotlight, one group too often falls under the radar — aging LGBT people and LGBT caregivers. But advocacy for this community is more important now than ever. After all, there's an estimated 1.5 million LGBT people 65 and over in the U.S., and this number is expected to double by 2030. Additionally, 9 percent of caregivers self-identify as LGBT, according to a 2015 report. 

This group not only faces the universal emotional and physical pains that come with aging and caregiving, but often deal with added stressors specific to being LGBT. To help caregivers cope and find community, support groups are held through SAGE — the country's largest and oldest organization dedicated to advocacy and services for LGBT elders. These groups provide safe spaces for people to connect, share their stories, and learn how to better care for each other and themselves. 

To learn more about the support groups, what kind of issues LGBT caregivers and elders face, and how caregiving services will hopefully progress in the future, we spoke to Teresa Theophano, assistant director of care management services. 

SAGE Friendly Visitor 
SAGE Friendly Visitor  www.flickr.com

Theophano, who has been at SAGE for three and a half years, began her current role in 2016 overseeing social services programming at the SAGE Midtown Manhattan headquarters. Her responsibilities include, but are not limited to, supervising other care managers and facilitating two support groups for caregivers of older adults funded by the Department for the Aging. In these groups, either the caregivers, recipients, or both, are LGBT. The caregivers are unpaid friends or family members of older adults who need emotional support and sometimes case management services. They may also be chosen family, meaning those LGBT elders who don't have children, or are not in contact with families of origin, may designate a person in their lives to help care for them, such as an ex partner. 

The support groups Theophano facilitates can be a lifesaver for LGBT people who may find their caregiving duties lonely and isolating, and also may have limited access to LGBT-affirming resources. 

"I think it's really difficult for care recipients who are LGBT going into any sort of facility, whether it's an assisted living program or long-term care, like a nursing home, because that really can feel very isolating," Theophano told A Plus over the phone. "There aren't necessarily other LGBT people around."

mrmohock I Shutterstock
mrmohock I Shutterstock

This feeling of isolation is often shared by LGBT elders who find they have to go back into the closet upon entering long-term care facilities that lack "trained staff and policies to discourage discrimination," reports PBS. These same people may have been on the front lines fighting for their civil liberties in the '70s only to later be surrounded, in senior homes, by the very people they were fighting against. 

In 2016, Patrick Mizelle and Edwin Fisher, a couple who'd been together for 37 years, told PBS they worried about senior communities feeling too "churchy." "I thought, 'Have I come this far only to have to go back in the closet and pretend we are brothers?" Mizelle told the publication. "We have always been out and we didn't want to be stuck in a place where we couldn't be." PBS also points to a report published by Justice in Aging, a national nonprofit legal advocacy organization showing that "only 20 percent of LGBT seniors in long-term care facilities said they were comfortable being open about their sexual orientation."  

For couples like Mizelle and Fisher, SAGE's LGBT-friendly five senior center locations, one located in each borough of New York City, can be safe havens. But feelings of social isolation extend to homebound adults, too, who may have faced discrimination throughout their lives, and/or do not have a child or spouse to care for them because of stigmas and/or laws that may have prevented them from adopting or marrying. According to The National Institute of Health, most LGBT elders are likely to be single and without adult children, and SAGE reports they are twice as likely to live alone than non-LGBT elders — an issue that is discussed in Theophano's support groups for caregivers. 

Davids' Adventures I Shutterstock
Davids' Adventures I Shutterstock

"One of the people in the caregiving group is the adult niece of a man in his 90s. It's so hard for him because he regrets never having children, and she is like the daughter he never had," Theophano explained to A Plus. "He really wanted his legacy to live on, and he never ended up having children, so I think also the issue of not having a child care for you, and instead having to rely on extended family or a neighbor, is unique to LGBT older adults." 

When issues like this arise, Theophano doesn't offer direct advice to those in the support groups, but rather facilitates conversation to foster a peer support model. She notes those in her groups are remarkably sophisticated at mutual aid and helping each other find ways to cope with the emotional stressors and reactions to challenges that may arise. If concrete needs come up, she'll provide case management support. 

"My co-facilitator and I will ask open-ended questions," she said. "We encourage members to share ideas with each other, and best practices for emotional support, and we sort of step in to keep the group on track and on topic." 

Though Theophano says the issue of an LGBT person caring for a homophobic cis heterosexual family member hasn't been discussed in her groups, it is something LGBT caregivers may face.  

"Sometimes the parents weren't always accepting of the caregiver child, who may have come out many years ago, which can be hard for the caregiver now — doing everything for the parents, who really wasn't supportive when [their caregiver] told them who they were. But there's this sense of duty and loyalty, so the children step up as caregivers, which is really generous." 

“It takes a special person to be a caregiver. They give up a lot, and they need to be reminded to take some time and space for themselves.”

SAGE Friendly Visitor 
SAGE Friendly Visitor  www.flickr.com

Those in Theophano's support groups remind each other to do just that, and Theophano says she generally sees caregivers better adjusting to their responsibilities through connecting with peers. She points to one story of a lesbian caregiver in her 70s who blossomed after joining a SAGE support group. 

"[She] really didn't want to reach out for help, and thought she needed to go it alone, but was feeling overwhelmed and resentful about her caregiving duties. She finally sucked it up and called SAGE, and I opened a case for her to become one of my clients. She joined one of the groups, and met all these other LGBT caregivers, and for the first time, she felt open and comfortable within an LGBT community, which really wasn't something she'd been part of in the past. But also, she began to feel so much less isolated after hearing everyone else's stories … " 

Though Theophano has her doubts about positive progression for the LGBT community at large given the current political climate, she is hopeful that care for LGBT older adults will continue to get better as we become a more accepting society. With marriage equality and adoption, future LGBT elders will hopefully have more direct family to care for them, more economic security for retirement as employment discrimination fades, and better access to LGBT-affirming resources, such as health care and long-term care facilities. LGBT caregivers will also hopefully have more access to support groups specific to their needs. But there is much work to be done to ensure life improves for LGBT people in their golden years. For that, Theophano has some recommendations, such as creating more intergenerational initiatives. 

"I think one thing that would be really helpful is to have more LGBT people assume guardianship of LGBT older adults who don't have family," she said. "I would love to see some programming starting around that, much in the way that there have been initiatives for LGBT youth to be fostered or adopted by LGBT parents."

"It’d be great if there was a sort of intergenerational adoption going the other way as well."

LGBT Pride Parade 2011
LGBT Pride Parade 2011 www.flickr.com

She also believes representation of older LGBT people in mainstream media is essential for creating inclusive spaces. She points out that because our culture is so youth-oriented, it often doesn't occur to people that an older adult might be sexual, let alone LGBT, which is a function of ageism.  

"I'd love to see that change," she said. "I also think that a big piece of social change that needs to happen around welcoming older LGBT adults is to create accessibility of spaces and buildings for people with disabilities, assistive devices, with visual and hearing impairments, etc. I think that would go a long way toward the welcoming of older generations." 

In the meantime, SAGE works to make life better for LGBT elders and caregivers by offering a range of services in addition to support groups and senior centers, such as a friendly visiting program (founded in the late 1970s), in which LGBT volunteers are matched with older adults for weekly one-on-one visits for socialization and support. In 2009, SAGE also launched SAGECAP (Caring and Preparing), a program that further provides LGBT caregivers with peer-to-peer support, but also helps prepare them for their own aging futures by providing LGBT-affirming support and resources. Beyond SAGE, other organizations, such as AARP and the Alzheimer's Association, are also starting to take notice and cater to issues specific to LGBT elders. 

It is essential we continue to shed light on the issues LGBT elders and caregivers face to ensure they have better access to support and resources in the future. We must continue to fight to pass anti-discrimination legislation, as well as work to create more welcoming communities for these people, and more representation in the media. It's a long hard fight, but, for the sake of the younger LGBT generation of today, we can't slow down. 

A Plus is proud to have collaborated with Services & Advocacy for GLBT Elders (SAGE) — the United States' largest and oldest organization dedicated to improving the lives of lesbian, gay, bisexual and transgender (LGBT) older adults — for this story. Learn more about SAGE by visiting www.sageusa.org

Cover image via ABO PHOTOGRAPHY I Shutterstock

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