By Ellen Rand, New America Media
Lawrence Johnson and Alexandre Rheume were an interracial couple, who had been together 38 years until Rheume – 22 years older than Johnson – needed professional care as his health declined.
At first, Rheume moved to an assisted living development, but they both felt unwanted, uncomfortable and judged, as when Johnson would do such simple things as feeding or holding his partner’s hand. Rheume moved to a nursing home that felt more welcoming.
“It’s bad enough that you have to put someone in a nursing home,” Johnson explained to filmmaker Stu Maddux, whose documentary “Gen Silent” shares the experience of six LGBT elders in the Boston area. “Then to compound the fact there may be prejudices, and the person going into the nursing home might not be treated as well — not in obvious ways but all these subtle things that let you know you’re not wanted.”
For elders who are lesbian, gay, bisexual or transgender (LGBT) and contending with advanced illness, returning to the closet fearing deliberate neglect, disapproval or abuse is not uncommon.
Fears About Senior Homes
Their fears are not unfounded. In Spring 2011, six organizations that advocate for elders and for the LGBT population published the study, “LGBT Older Adults in Long-Term Care Facilities: Stories from the Field.”
Among the highlights: Only 22 percent said they could feel open about their sexual orientation with staff at a nursing home, assisted living or another long-term care facility. Of those who lived in long-term facilities, or cared for those who did, the most frequently reported problem was negative treatment from other residents, followed by verbal or physical harassment by staff.
Moreover, half reported staff refusing to provide basic care (such as toileting, bathing or feeding).
Some respondents shared their sorrows and stories of lives derailed–couples separated by family members holding legal authority over the facility resident; feelings of loneliness and isolation because of disapproval by other residents or staff; having aides attempting to get people to “repent” for their sins; choosing to go back into the closet for fear of neglect or harm.
A 2011 study by the Center for American Progress and Services and Advocacy for Gay, Lesbian, Bisexual, and Transgender Elders (SAGE) found LGBT seniors to be significantly more vulnerable to isolation. Very few have children, they are twice as likely to live alone, twice as apt to be single than heterosexual elders, and often in poorer financial straits than their heterosexual peers.
According to the National Resource Center on LGBT Aging, the population of LGBT older adults in the U.S. will have more than tripled from about 2 million in 2010 to 7 million by 2030.
The HIV Impact
Also, more than one-third of the 1.25 million people in the U.S. living with HIV in 2011 were aged 50 or older, according to the Centers for Disease Control and Prevention.
Speaking earlier in April at the Association of Health Care Journalists’ annual conference, James Hekman, MD, a clinical assistant professor at the Lerner College of Medicine at Case Western University, in Cleveland, listed a spectrum of HIV-associated illnesses, such as cardiovascular disease, non-AIDS cancers, liver, kidney and neurological diseases. Up to 30 percent of people living with HIV have abnormal kidney function, which, untreated, can be fatal.
If contending with a serious illness is a challenge for gay and lesbian individuals and those living with HIV, it presents, even more, hurdles for transgender individuals (evidence of which can be found on Twitter, hashtag #transhealthfail).
Research has exposed health professionals’ widespread bias against LGBT people. The 2010 report, “When Health Care Isn’t Caring,” surveyed nearly 5,000 people on discrimination against LGBT people and those living with AIDS. About half of study participants reported that health care providers had refused needed care, declined to touch them or took other excessive precautions, blamed them for their health status, or were physically rough or abusive.
Also, transgender individuals reported being subjected to substantially more of these kinds of events. Transgender individuals generally are at a higher risk for experiencing advanced stages of long-term diseases due to their mistrust of the health care system and experience of rejection, discrimination or simple lack of medical knowledge about trans people by health care professionals.
“Health care providers do not know anything about us,” said one of eight people interviewed for the 2014 paper, “Aging With Pride: End of Life Conversations in Tucson’s Elder LGBT Communities,” by Penelope Starr.
She explained that this speaker was a fifty-something female-to-male transgender individual, who added that some health professionals “are just now starting to get a little in medical school, but they do not know how to talk to us–what our issues are. [They] do not have the right questions on their forms, do not know what the appropriate hormone dosage is and what to look for in blood work.”
Starr was one of some “citizen folklorists” engaged by the Southwest Folklife Alliance’s Continuum project, which shares cultural knowledge about traditions, expressions, and practices associated with experiencing the end-of-life, mourning, and death in Southern Arizona’s folk, ethnic, occupational, faith-based and alternative communities.
Suicide is a Real Possibility
When fear, isolation or depression become unbearable, suicide is a very real possibility, noted Imani Woody, Ph.D., founding a director and president of the LGBT-friendly Mary’s House for Older Adults, slated to open in in the Washington, D.C. area next winter.
“Research is showing that a large majority of older gay folks are going back into the closet. Anecdotally, we are finding their numbers climbing in the suicide rates,” said Woody, who blogs for the Diverse Elders Coalition.
She continued, “We know that the realities of living alone–not having a partner or spouse, leaving one’s home, and becoming dependent on systems and people–can bring about a sense of loss and grief so great that suicide seems the only answer.”
What’s needed, Woody said, echoing LGBT individuals and advocates, is to “change the environments that cause our elders to run back into the closet for safety or commit suicide.”
Caregiving and grief took its toll on Lawrence Johnson, who admitted to becoming increasingly isolated, depressed and suicidal as Alexandre Rheume’s health declined. But Johnson’s story has a happier ending than most: He began to write poetry and after Rheume’s death, gradually began a new chapter and a new relationship.
Ellen Rand is a journalist, hospice volunteer and author of the book Last Comforts: Notes from the Forefront of Late Life Care. Amazon.com/author/ellenrand. Website: http://lastcomforts.com. Twitter: @EllenRandNJ.