LGBT must prepare for end-of-life, too

David Heitz


Gay people 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.

LGBT people must prepare for end-of-life health care. Their trip over the rainbow eventually comes no matter how young they feel.

“We don’t like to think about ourselves getting older, or getting sick,” he said.

Many LGBT people find themselves alone when they enter their golden years. They sometimes lose touch with blood relatives.

LGBT people are less likely to have children or a spouse. They often have no one to rely on for help in their senior years other than other gay people.

When the caregiver isn’t blood or a legal spouse

That often presents a problem because their caregiver is not a blood relative.

“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, CNN reported.

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

Gay people step up to the caregiver plate

“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 SAGE program in New York City. 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

A three-year grant from the Harry and Jeannette Weinberg Foundation funded the Chase Brexton program. Chase Brexton is a federally funded, holistic healthcare center.

Services ranged 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’s 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.

Help with paperwork for end-of-life decisions

Chase Brexton also will be able to advise LGBT people about the paperwork they need for designating someone to make their healthcare and end-of-life decisions

It’s not something many LGBT people think about.

Of the aptly titled PBS documentary, “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 as they enter the golden years themselves.

Among Baby Boomers who care for their parents, LGBT children are more likely to step up to the plate when compared to their heterosexual siblings, Sweeney said.

The LGBT people step up for the very reason that threatens their own senior security – they are 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.”

Home health care workers are paid very poorly. The people who take care of your parents often live in poverty.

LGBT seniors who need skilled nursing care or can afford an assisted living facility often find themselves being shooed back inside the closet.

For seniors, homophobia a slap in the face

For seniors who fought for equal rights, homophobia in long-term care centers adds insult to aging.

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 long-term care facility audits to determine LGBT friendliness.

“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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I have been in the news business more than 30 years, spending much of my career at some of the best newspapers in the country. Today, I specialize in Denver local news, health reporting, social justice issues, addiction/recovery/mental health news, and topics surrounding homelessness and human trafficking.

Denver, CO

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