LGBT people need to prepare for their own trips over the rainbow

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Editor’s note: This piece originally was published in 2015 for the website Caregiver Relief, which no longer is live. Reprinted here with permission.

Gay people tend to spend much of their lives thinking they’ll never get old.

And then they do. Often alone, unfortunately.

“In the LGBT community we are very ageist,” said Nate Sweeney, executive director of the LGBT Center at Chase Brexton Health Care in Baltimore. “We don’t like to think about ourselves getting older, or getting sick.”

The reality is that many gay people find themselves alone, without blood relatives, children or a spouse when they enter their golden years. They often have no one to rely upon than other LGBT people, who often are not their partner or spouse, to care for them.

“If I get hit by a car, my husband can go into the hospital and tell them what my wishes are, and that’s a great piece of marriage equality,” said Sweeney, who is legally married. “But the vast majority of LGBT people are not married, have no children, and live alone.”

Even for those who do have partners, if they are not legally married and they don’t have advance directives in place, who will make end of life decisions?

LGBT older adults are part of a vast group of Baby Boomers called “elder orphans.” As many as 25 percent of Boomers are elder orphans, as CNN reported in May.

That’s why Chase Brexton just launched a new program called SAGECAP Baltimore. The program provides resources, education and support for informal, unpaid LGBT caregivers in the community.

“LGBT people for years have been caring for their families of choice,” Sweeney said. “Maybe they moved across the country, and they are isolated from blood relatives. Maybe they started caring for an ex from 15 years ago because they don’t want that crazy sister that’s five states away making medical decisions.”

There also is a SAGECAP program in New York City, but it is run out of a senior center, not a healthcare facility. SAGE is an acronym for the New York-based Services & Advocacy for Gay, Lesbian, Bisexual & Transgender Elders.

According to SAGE, about 80 percent of long-term care in the United States is provided by family members. However, older LGBT adults often are estranged from their families. LGBT seniors are twice as likely to live alone and three times more likely to be without children.

One stop elder care, caregiver referrals

The Chase Brexton program is being funded with a three-year grant from the Harry and Jeannette Weinberg Foundation. What makes the program unique is that Chase Brexton is a federally funded, holistic healthcare center.

Services range from LGBT-centered caregiver support groups to full blown case management. “As you know, it’s very isolating being the caregiver,” Sweeney said. “So being able to reach them and find them is difficult. That why we’re partnering with other interested providers so they can make referrals to our services. We’re hoping we’re building something that can be replicated at other LGBT health centers.”

On the national level, SAGE has provided cultural sensitivity training to the Alzheimer’s Association of America. Conversely, the Alzheimer’s Association has provided caregiver support training to SAGE.

At Chase Brexton, caregivers can get support and referrals for themselves when they bring their loved ones for medical appointments. Services may include referring a stressed-out caregiver to a mental health therapist, for example.

Chase Brexton also will be able to advise LGBT people about the sorts of paperwork they need to have designating someone to make their healthcare and end of life decisions. It’s not something many LGBT people think about.

In the aptly-titled PBS document, “Before you Know it,” filmmaker P.J. Raval said, “When people watch this film, what I’m hoping they take away from it is that the aging process doesn’t discriminate. It’s actually something that happens to all of us, and gay men are having some of the most extreme examples of ageism, isolation, without a family structure, often single and with no children. They have to make their own communities and find their own communities.”

Elder care: An American healthcare crisis

Caring for the elderly has become a healthcare crisis in America, with 11,000 Baby Boomers turning 65 every single day. Many Baby Boomers already are caring for their own parents, not to mention that they’re getting older themselves

Among Baby Boomers who care for their parents, LGBT children are more likely to step up to the plate for that task as compared to their heterosexual siblings, Sweeney said. And it’s often because of the very thing that threatens their own livelihood when they get older – they’re alone.

“Our healthcare system for elders in this country needs a lot of work,” Sweeney said. “We don’t value the elderly in our society. All these systems have been brought up not to value or elders, nor the staff who works in these fields.”

In a story I wrote last year for Healthline News titled, “The People Caring for Your Parents Live in Poverty,” I reported on the extremely low pay that home health care workers receive for their important caregiving work.

For LGBT seniors who need skilled nursing care or who can afford an assisted living facility, they often find themselves being shooed back inside the closet. For seniors who blazed the trail for equal rights for gay men and lesbians, it adds insult to aging. I wrote about that last year in this story for Los Angeles Times Content Solutions.

SAGE is working nationally to change that reality. It has provided training to more than 3,000 elder workers in 27 states to help create more affirming environments in nursing and assisted living facilities. Training varies from online courses to in-depth, on-site training. The organization even provides facility audits.

“Reforming the entire aging services industry…it’s a huge undertaking,” Sweeney said. “There are 11,000 McDonald’s in the U.S. There are 16,000 nursing homes. That’s not something we think about a lot when it comes to making systemic changes. The corner we’re starting in is about the caregiver, and helping LGBT older adults prepare for their own futures.”

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