While Darcy Connors was a nursing home administrator in the South, she also operated a COVID-19 recovery center.
Connors and her staff noticed that two of the patients in their charge had a strong connection with one another—they were obviously a couple but were reluctant to inform the staff.
"One of the partners was hospitalized, and the other partner wasn't able to visit him in the hospital," recalled Connors, who is transgender and is now executive director of New York City-based SAGEServes, which advocates for high-quality, inclusive programming and service-delivery for LGBTQ+ seniors. "They both ended up in the nursing home that I was operating for recovery post-COVID. We knew the connection. You can feel someone's love for someone else." (SAGEServes is a division of the larger SAGE organization, which advocates for LGBTQ+ older adults.)
Connors explained to the couple that she and the staff knew their situation. She disclosed her identity and said she wanted to provide a safe space for them to have direct conversations about their care and caregivers.
"Unfortunately, they still felt that fear," she added. "Especially with rural older adults, closeting yourself is very common. But we see that here in New York City [as well]."
Planning for the difficulties befalling any person late in life is challenging for any American. No matter the financial, emotional and physical preparations in anticipation of retirement and beyond, those preparations can all come undone quickly because of unanticipated financial, health or family crises, among other factors.
That precariousness is even more pronounced for LGBTQ+ Americans, experts agree. That community must be diligent to be sure that their health and financial directives will be carried through, and that they can access high-quality and culturally competent service providers. SAGE reports that LGBTQ+ older adults are twice as likely to be single and four times less likely to have children, further complicating caregiving needs.
"Even [when considering] accessibility into hospitals, nursing homes or doctors' offices, if your family is not registered in the right way legally—such as having a marriage certificate, having a caregiver that has an advance directive to support you—they might not have access to support you—there's some stigma that goes with that," Connors explained.
"There is such a pressing need for people to understand what needs to be put in place to ensure that their wishes are honored should they need to receive care from someone else—and to make care easier for that person," said Kimberly Acquaviva, the author of LGBTQ-Inclusive Hospice and Palliative Care: A Practical Guide to Transforming Professional Practice.
Acquaviva, a professor at the University of Virginia School of Nursing, had already spent a large portion of her professional life researching the needs of LGBTQ+ older adults by the time her late wife Kathy Brandt became ill. The couple saw firsthand how many logistically fraught medical and end-of-life decisions same-sex couples dealing with a long-term illness faced.
"There's a lot written about advance directives that will help express your wishes, like a durable power-of-attorney and a health care surrogate," Acquaviva said. "But the other piece people don't talk about are some of the practical aspects beyond the documents people know about. If you did need to be on the receiving end of caregiving, who's going to be in charge of paying your bills? Where do you keep your passwords? My wife and I began brainstorming about, 'What are all the things you need to know in a couple?'"
Additionally, LGBTQ+ folks need to ensure that their service providers are culturally competent when it comes to treating and serving community members. Acquaviva suggests both looking for providers with nondiscrimination statements addressing sexual orientation and gender identity and being explicit in directives about who is to provide care and what that care will look like.
Connors knew of another situation where an older transgender woman had no designated caregivers, so her care reverted to her parents. Those parents, over the course of their caregiving, for all practical purposes, "un-transitioned" the woman.
"Everything that this person as a transgender adult had put in place was struck and reversed, including gender-affirming care and surgeries that were in place," Connors explained.
In the last several years, organizations like SAGE and various activists have been calling attention to the difficulties LGBTQ+ folks face and providing resources that can help. In late 2021, Human Rights Campaign and SAGE joined forces to create a consumer guide to finding a long-term care community, for example. AARP also publishes a caregiving guide.
LGBTQ+ folks shouldn't wait for a particular age or stage of life to begin consideration of their later-life plans, Connors said.
"Looking to your doctor is a good start," she added, recalling that when she relocated to New York City, she immediately spoke with her new doctor about updating her advance-directive documentation and making sure that Connors' wife received copies.
"It's really easy to put off those things because it's so overwhelming," admitted Acquaviva. But she nevertheless advises that every LGBTQ+ member consider who in their circle they want to discuss their end-of-life planning.
"For all of us—not just LGBTQ people, but everybody—we tend to think that we're younger than we actually are," she added. "I'm 51, but I feel like a 27-year-old. The idea of aging can feel really far away, and the idea of needing care is tied into getting older. When my wife got sick, neither one of us were 'old,' but we weren't 15-year-olds either. It's important for us to have these hard conversations."
This article appears as part of News is Out, a collaboration between Windy City Times and five other nationwide LGBTQ+ publications, and is possible through a grant from AARP. See newsisout.com.
Online Resources
SAGE: sageusa.org .
HRC/SAGE's LGBTQ+ guide for finding long-term care: Website Link Here .
AARP caregiver guide: Website Link Here .
"There is such a pressing need for people to understand what needs to be put in place to ensure that their wishes are honored should they need to receive care from someone else—and to make care easier for that person," said Kimberly Acquaviva (pictured), the author of LGBTQ-Inclusive Hospice and Palliative Care: A Practical Guide to Transforming Professional Practice.
