Caregiving and advocating for family members or friends is a challenging and sometimes heart-rending labor of love. According to the National Alliance for Caregiving and AARP, 9 percent of America's caregivers identify as LGBT. When LGBT people give or receive care, new dimensions and unexpected issues can arise. Below, five people share their unique perspectives on LGBT caregiving.
This isn't how life should look for bright young couples. In October 2013, Andrew Cray, a transgender man, and Sarah McBride, a transgender woman, were coming home not after a fun date, but from Johns Hopkins Hospital in Baltimore. Cray, a passionate advocate for LGBT health with the Center for American Progress, had undergone surgery for oral cancer. His tongue was partially replaced by a skin graft from his forearm.
"Andy was discharged after his surgery with a tracheostomy tube, a feeding tube, several blood pouches and a massive arm wound," recalls McBride, the national press secretary of the Human Rights Campaign. "And I was given very brief, very quick instructions that I was not entirely able to retain."
When Cray's mouth started bleeding, they rushed him to the nearest emergency room in the District of Columbia. Finally, at 3 a.m., they were back home, but all wasn't well, and Cray's breathing tube needed attention. "We can't figure it out," McBride says. "He's 27 and I'm 24 at the time. We're fresh out of college and freaking out; really not knowing what to do and how to handle it."
From Cray's initial diagnosis to his early clean bill of health, followed by the cancer's return and his terminal prognosis in July 2014, McBride was at his side. They married in late August, four days before he died. Through it all, the consciousness of discrimination faced by LGBT patients was always there. "We were worried," McBride says. "Would Andy's life mean as much to these people as another patient's life – a patient who wasn't transgender?"
McBride believes Cray, who died later that month, received good care despite their fears. They were fortunate to receive care in areas of the country with nondiscrimination protections for LGBTQ people, she adds: "That provided us at least to some degree with peace of mind that folks in a number of states don't have."
Filling in for Family
Filmmaker Stu Maddux produced and directed "Gen Silent," a documentary about the struggles of elder – and not so-elder – LGBT Americans in poor health with few potential caregivers. "Their support group is naturally smaller because of the estrangement from family or friends or from compartmentalizing their lives over a lifetime," he says. Others may have been lost to the AIDS crisis.
In the film, Maddux, who is gay, became part of a caregiving team for a transgender woman with late-stage lung cancer. Having recently made her identity transition, she was going through a final estrangement from a complicated family situation. As her illness progressed, her family was absent.
With impaired breathing and reduced ability to move around, the woman could no longer make meals or do household tasks like laundry. At 59, she was faced with either going into a nursing home or accepting help from hospice and a team of others around her. "She was terminally ill, but there was an opportunity to extend the quality of her life if we all got together and took care of her," Maddux says.
In his non-medical, volunteer capacity, Maddux learned how he could be most helpful to the dying woman. "Simply being in the living room while she was in the bedroom living her life," he says. "Not having to keep her company, but just being there when she needed something."
Diego Sanchez is the director of advocacy, policy and partnerships for PFLAG National, the unified voice of LGBTQ people, families and allies. In 2012, Sanchez was stunned to discover his mother was a victim of retaliation as a resident in a skilled nursing facility, because certain staff members disapproved of Sanchez, her Latino transgender son.
"After I visited my mother several times, they started withholding meals, not keeping her bedding clean, not bathing her daily and also talking money that I sent her and gifts that I sent her," Sanchez says. He called for a meeting with the facility owner, manager and his mother's direct caregivers. "In that exchange, over a three-hour meeting, they told me clearly she should have made me better and not had a transgender child," he says. "That was their assessment, and they took it out on her."
Sanchez made formal complaints and moved his mother to a different facility, where she stayed until she died. First, however, he met with all relevant personnel and said: "If there are going to be any problems, you better tell me now, because I'm not going to take this sitting down." He feels comfortable that she received good care there.
"While we must trust the people giving or receiving care in our families, we are equally reliant on the professionals in our midst," Sanchez says. Recipients, he says, must receive care in the same way as any other visitor or resident and without discrimination.
Protection for LGBT Elders
For people who seek welcoming, inclusive caregiving, many recommend SAGE (Services and Advocacy for Gay, Lesbian, Bisexual and Transgender Elders) as an excellent starting point.
"We help LGBT people in their caregiving needs," says Hilary Meyer, chief enterprise and innovation officer for SAGE. That could include older people directly accessing education and resources or younger LGBT people who are helping their aging parents.
SAGE educates and trains service providers working in mainstream agencies to understand the unique needs of LGBT people. Agencies should make it clear that their policy is nondiscriminatory and welcoming for care recipients and visitors alike, Meyer says: "If you're not addressing that you're an inclusive and safe place, then the assumption's going to be that you're not."
In 2013, Vega Subramaniam, a leadership coach, was living in the Seattle home she shared with her wife Mala Nagarajan when the life-changing plea came: for the couple to move across the country to Rockville, Maryland, as live-in caregivers for Nagarajan's ailing parents.
Picha Nagarajan, Mala's mother, struggled with ongoing health issues, including deafness, diabetes and incapacitating arthritis. Making the situation urgent, Raj Nagarajan, Mala's father, had just been diagnosed with lung cancer and emphysema and was failing fast. But despite the younger women's willing and generous help, gratitude was not unconditional. While Picha was fully accepting of their marriage, her husband wasn't.
"Mala's dad never accepted us and really struggled with the fact that she was a lesbian and that I was her wife," Subramaniam says. "When folks would come over, he would introduce me as Mala's friend," Subramaniam recalls. But Mala would correct her father: "She's my wife."
Caregiving couples in this situation are not unusual. "It's something we're more and more experiencing and having conversations about – being the queer caregivers for elderly parents who have never accepted us," Subramaniam says. "Who sometimes have disowned us for periods of time or made our lives pretty miserable. But as they get older and need more care, they end up turning to us. What other choice is there?"
Her father-in-law's health rapidly deteriorated. In his final few days, his wife, adult children and Subramaniam remained in his hospice room 24/7. The family shared intimate moments, including taking family photos. She stayed off to the side as the default photographer.
"And after all the configurations were done, I was about to put the camera away," Subramaniam says. "Raj was so weak – he could barely breathe; he was on a machine; there were tubes – you could barely hear him. He said, 'I would like a photo with Vega.'"