Baby boomer LGBTQI people in care homes are “de-gaying” themselves to hide their sexual or gender identity for fear of bullying and discrimination from staff and other residents, a film maker has said.
Glenda Rome’s film, Return To The Closet?, featuring Scots who lived in some of the toughest times to be gay, will be premiered at the CCA in Glasgow on 1 May, 2019, at the launch of the month-long 2019 Luminate festival for older citizens.
The documentary is released in the same year as the 50th anniversary of the Stonewall riots in Greenwich Village in New York, which saw a week of rioting breaking out after police raided the Stonewall Inn gay club in the early hours of 28 June, 1969.
The event was hailed as being a catalyst for the modern fight for the gay rights movement in the US and around the world.
Older LGBT people in care or who have carers visiting their homes have spoken of “de-gaying” their living space by removing photographs of themselves with a same-sex partner and mementoes of their past.
Others say they are afraid of how other residents will treat them if they reveal their sexuality.
However, Rome, commissioned by Luminate and LGBT Age, to make the film, said one of the most shocking things uncovered during research and extensive interviews was that many care homes report they have no LGBTQI residents.
“The idea of older people feeling they have to ‘go back into the closet’ is terrible. It’s something people are just starting to think about now and the last thing we need is for the progress that has been made, which was hard-won for a generation who lived through the criminalisation of their sexuality, to be undermined.
“The real value of this film is not about creating answers but about inspiring an important conversation.”
Homosexuality among men was illegal in Scotland until 1980 – lagging 13 years behind the law in England and Wales.
This was a factor behind former lecturer Alan Johnson, 77 – who lives in Largs, and appears in the documentary – leaving Scotland in the mid-60s, after graduating from the University of St Andrews to move to London.
“My decision to move to London was in large measure related to escaping from then Presbyterian, and distinctly homophobic, Scotland to a more liberal and welcoming environment where gay venues (bars, clubs and other meeting places) were already more established and accepted.
“Many of my friends did likewise around the same time, and for the same reasons.
“When I was a teenager in Scotland in the mid-1950s same-sex relationships were illegal, criminalised, condemned and pathologised; the word ‘gay’ was not in use; religious intolerance was widespread; and ‘coming out’ (least of all to my churchgoing parents) was quite impossible.
“Fortunately, so much has changed for the better in recent years – but this repression has left a near indelible mark on many older LGBT people, particularly so in Scotland. Many of us speak about this in the film.”
Johnson added: “The whole point in making this film was to influence carers, particularly in care homes.
“There are people who have had all sorts of bad experiences in care homes or when receiving care at home because of their sexuality.
“In general, before you need help, it can be quite common to be ‘out’ to some people but not all. But once you are in residential care that living space becomes your home and you should feel safe and have freedom to be honest about how you live your life.”
Liz Haggart, in her late-60s, from Edinburgh, who also appears in the documentary, said she and her LGBT friends had been speaking about their fears if they need care in the future.
“We’ve spoken about this a few times. We’re really worried about it.
“But the thing is, there’s probably a lots of gay people in the care sector, scared to come out, wondering how the rest of the staff would treat it.”
Donald Macaskill, chief executive of Scottish Care, who will take part in a Q and A session following the screening, said: “In order to become a carer staff must have a qualification, usually a SVQ3 covering equality and diversity. So in terms of the workforce I’m sure there will only be a tiny minority who may not choose to address the issue sensitively.
“Another factor to bear in mind is that any residents in a care home living with dementia may be less inhibited about expressing opinions which they held years ago, sometimes giving offence to others.”
Few people have enchanted the popular imagination with science more powerfully and lastingly than physicist Richard Feynman (May 11, 1918–February 15, 1988) — the “Great Explainer” with the uncommon gift for bridging the essence of science with the most human and humane dimensions of life.
“My heart stopped,” Gleick tells me. “I have never had an experience like that as a biographer, before or since.”
In a mass of unread papers sent to him by Feynman’s widow, Gweneth, Gleick found a letter that discomposed his most central understanding of Feynman’s character. A generation after computing pioneer Alan Turing tussled with the binary code of body and spirit in the wake of loss, Feynman — a scientist perhaps uncommonly romantic yet resolutely rational and unsentimental in his reverence for the indomitable laws of physics that tend toward decay — penned a remarkable letter to a physical nonentity that was, for the future Nobel-winning physicist, the locus of an irrepressible metaphysical reality.
In high school, the teenage Richard spent summers at the beach in his native Far Rockaway. There, he grew besotted with a striking girl named Arline — a girl he knew he would marry. Both complement and counterpoint to his own nature, Arline met Richard’s inclination for science with ardor for philosophy and art. (The art class he took just to be near her would lay the foundation for his little-known, lifelong passion for drawing.) By his junior year, Richard proposed. Arline accepted. With the eyes of young love, they peered into a shared future of infinite possibility for bliss.
But they were abruptly grounded when a mysterious malady began afflicting Arline with inexplicable symptoms — a lump would appear and disappear on her neck, fevers would roil over her with no apparent cause. Eventually, she was hospitalized for what was believed to be typhoid.
Feynman began to glimpse the special powerlessness that medical uncertainty can inflict on a scientific person. He had come to believe that the scientific way of thinking brought a measure of calmness and control in difficult situations — but not now.
Just as Feynman began bombarding the doctors with questions that steered them toward a closer approximation of the scientific method, Arline began to recover just as mysteriously and unpredictably as she had fallen ill. But the respite was only temporary. The symptoms returned, still shorn of a concrete explanation but now unambiguously pointing toward the terminal — a prognosis Arline’s doctors kept from her. Richard refused to go along with the deception — he and Arline had promised each other to face life with unremitting truthfulness — but he was forced to calibrate his commitment to circumstance.
His parents, Arline’s parents, and the doctors all urged him not to be so cruel as to tell a young woman she was dying. His sister, Joan, sobbing, told him he was stubborn and heartless. He broke down and bowed to tradition. In her room at Farmingdale Hospital, with her parents at her side, he confirmed that she had glandular fever. Meanwhile, he started carrying around a letter — a “goodbye love letter,” as he called it — that he planned to give her when she discovered the truth. He was sure she would never forgive the unforgivable lie.
He did not have long to wait. Soon after Arline returned home from the hospital she crept to the top of the stairs and overheard her mother weeping with a neighbor down in the kitchen. When she confronted Richard — his letter snug in his pocket — he told her the truth, handed her the letter, and asked her to marry him.
Marriage, however, proved to be a towering practical problem — Princeton, where Feynman was now pursuing a Ph.D., threatened to withdraw the fellowships funding his graduate studies if he were to wed, for the university considered the emotional and pragmatic responsibilities of marriage a grave threat to academic discipline.
Just as Feynman began considering leaving Princeton, a diagnosis detonated the situation — Arline had contracted a rare form of tuberculosis, most likely from unpasteurized milk.
At first, Feynman was relieved that the grim alternative options of Hodgkin’s disease and incurable cancers like lymphoma had been ruled out. But he was underestimating, or perhaps misunderstanding, the gravity of tuberculosis — the very disease which had taken the love of Alan Turing’s life and which, during its two-century heyday, had claimed more lives around the globe than any other malady and all wars combined. At the time of Arline’s diagnosis in 1941, immunology was in its infancy, the antibiotic treatment of bacterial infections practically nonexistent, and the first successful medical application of penicillin a year away. Tuberculosis was a death sentence, even if it was a slow death with intervals of remission — a fact Richard and Arline faced with an ambivalent mix of brave lucidity and hope against hope.
Meanwhile, Richard’s parents met the prospect of his marriage with bristling dread. His mother, who believed he was marrying Arline out of pity rather than love, admonished him that he would be putting his health and his very life in danger, and coldly worried about how the stigma attached to tuberculosis would impact her brilliant young son’s reputation. “I was surprised to learn such a marriage is not unlawful,” she scoffed unfeelingly. “It ought to be.”
But Richard was buoyed by love — a love so large and luminous that he found himself singing aloud one day as he was arranging Arline’s transfer to a sanatorium. Determined to go through with the wedding, he wrote to his beloved:
I guess maybe it is like rolling off of a log — my heart is filled again & I’m choked with emotions — and love is so good & powerful — it’s worth preserving — I know nothing can separate us — we’ve stood the tests of time and our love is as glorious now as the day it was born — dearest riches have never made people great but love does it every day — we’re not little people — we’re giants … I know we both have a future ahead of us — with a world of happiness — now & forever.
On June 29, 1942, they promised each other eternity.
He borrowed a station wagon from a Princeton friend, outfitted it with mattresses for the journey, and picked up Arline in Cedarhurst. She walked down her father’s hand-poured concrete driveway wearing a white dress. They crossed New York Harbor on the Staten Island ferry — their honeymoon ship. They married in a city office on Staten Island, in the presence of neither family nor friends, their only witnesses two strangers called in from the next room. Fearful of contagion, Richard did not kiss her on the lips. After the ceremony he helped her slowly down the stairs, and onward they drove to Arline’s new home, a charity hospital in Browns Mills, New Jersey.
Meanwhile, WWII was reaching its crescendo of destruction, dragging America into the belly of death with the attack on Pearl Harbor. Now one of the nation’s most promising physicists, Feynman was recruited to work on what would become the Manhattan Project and soon joined the secret laboratory in Los Alamos.
Arline entered the nearby Albuquerque sanatorium, from where she wrote him letters in code — for the sheer fun of it, because she knew how he cherished puzzles, but the correspondence alarmed the military censors at the laboratory’s Intelligence Office. Tasked with abating any breaches to the secrecy of the operation, they cautioned Feynman that coded messages were against the rules and demanded that his wife include a key in each letter to help them decipher it. This only amplified Arline’s sense of fun — she began cutting holes into her letters, covering passages with ink, and even mail-ordered a jigsaw puzzle kit with which to cut up the pages and completely confound the agents.
But the levity masked the underlying darkness which Richard and Arline tried so desperately to evade — Arline was dying. As her body failed, he steadied himself to her spirit:
You are a strong and beautiful woman. You are not always as strong as other times but it rises & falls like the flow of a mountain stream. I feel I am a reservoir for your strength — without you I would be empty and weak… I find it much harder these days to write these things to you.
In every single letter, he told her that he loved her. “I have a serious affliction: loving you forever,” he wrote.
In early 1945, two and a half years into their marriage, Richard and Arline made love for the first time. He had been too afraid of harming her frail health somehow, she too afraid of infecting him with the deadly bacterium consuming her. But Arline insisted that this pent up desire could no longer be contained and assured Richard that this would only bring them closer — to each other, and to the life they had so lovingly dreamt up for themselves:
I’ll always be your sweetheart & first love — besides a devoted wife — we’ll be proud parents too… I am proud of you always Richard –[you are] a good husband, and lover, & well, coach, I’ll show you what I mean Sunday.
But heightened as their hopes were by this new dimension of shared experience, Arline’s health continued to plummet. Her weight dropped to eighty-four pounds. Exasperated by the helplessness of medicine, which Feynman had come to see not as a manifestation but as a mutilation of the scientific method, he invested all hope in an experimental drug made of mold growths. “Keep hanging on,” he exhorted Arline. “Nothing is certain. We lead a charmed life.” She began spitting blood.
At twenty-seven, on the precipice of a brilliant scientific career, he was terminally in love.
On June 16, 1945, while working at the computing room at Los Alamos, Feynman received a call from the sanatorium that Arline was dying. He borrowed a colleague’s car and sped to the hospital, where he found her immobile, her eyes barely tracing his movement. Early in his scientific career, he had been animated by the nature of time. Now, hours stretched and contracted as he sat at her deathbed, until one last small breath tolled the end at 9:21PM.
The wake of loss has a way of tranquilizing grief with the pressing demands of practical arrangements — a tranquilizer we take willingly, almost gratefully. The following morning, Feynman arranged for his beloved’s cremation, methodically collected her personal belongings, and on the final page of the small spiral notebook in which she recorded her symptoms he wrote with scientific remove: “June 16 — Death.”
And so we arrive at Gleick’s improbable discovery in that box of letters — improbable because of the extreme rationality with which Feynman hedged against even the slightest intimation of metaphysical conjectures untestable by science and unprovable by reason. During his courtship of Arline, he had been vexed by her enthusiasm for Descartes, whose “proof” of God’s perfection he found intellectually lazy and unbefitting of Descartes’s reputation as a champion of reason. He had impishly countered Arline’s insistence that there are two sides to everything by cutting a piece of paper and half-twisting it into a Möbius strip, the ends pasted together to render a surface with just one side.
Everything that appeared mystical, Feynman believed, was simply an insufficiently explained mystery with a physical answer not yet found. Even Arline’s dying hour had offered testing ground for conviction. Puzzlingly, the clock in the room had stopped at exactly 9:21PM — the time of death. Aware of how this bizarre occurrence could foment the mystical imagination in unscientific minds, Feynman reasoned for an explanation. Remembering that he had repaired the clock multiple times over the course of Arline’s stay at the sanatorium, he realized that the instrument’s unwieldy mechanism must have choked when the nurse picked it up in the low evening light to see and record the time.
How astonishing and how touchingly human, then, that Feynman penned the letter Gleick found in the box forty-two years later — a letter he wrote to Arline in October of 1946, 488 days after her death:
I adore you, sweetheart.
I know how much you like to hear that — but I don’t only write it because you like it — I write it because it makes me warm all over inside to write it to you.
It is such a terribly long time since I last wrote to you — almost two years but I know you’ll excuse me because you understand how I am, stubborn and realistic; and I thought there was no sense to writing.
But now I know my darling wife that it is right to do what I have delayed in doing, and that I have done so much in the past. I want to tell you I love you. I want to love you. I always will love you.
I find it hard to understand in my mind what it means to love you after you are dead — but I still want to comfort and take care of you — and I want you to love me and care for me. I want to have problems to discuss with you — I want to do little projects with you. I never thought until just now that we can do that. What should we do. We started to learn to make clothes together — or learn Chinese — or getting a movie projector. Can’t I do something now? No. I am alone without you and you were the “idea-woman” and general instigator of all our wild adventures.
When you were sick you worried because you could not give me something that you wanted to and thought I needed. You needn’t have worried. Just as I told you then there was no real need because I loved you in so many ways so much. And now it is clearly even more true — you can give me nothing now yet I love you so that you stand in my way of loving anyone else — but I want you to stand there. You, dead, are so much better than anyone else alive.
I know you will assure me that I am foolish and that you want me to have full happiness and don’t want to be in my way. I’ll bet you are surprised that I don’t even have a girlfriend (except you, sweetheart) after two years. But you can’t help it, darling, nor can I — I don’t understand it, for I have met many girls and very nice ones and I don’t want to remain alone — but in two or three meetings they all seem ashes. You only are left to me. You are real.
My darling wife, I do adore you.
I love my wife. My wife is dead.
And then, with the sole defibrillator for heartache we have — humor — Feynman adds:
PS Please excuse my not mailing this — but I don’t know your new address.
Meaghan Jackson has a surprising amount of insight into death and love for a 36-year-old.
“Working here, it’s changed me,” Jackson said from a wood-panelled room at the North Shore Hospice, where she has worked as a music therapist for four years.
“It’s completely changed the trajectory of my life.”
Jackson guides the residents at the hospice through their final days. She helps them write songs for their loved ones, and plays music for them as they take their last breaths.
Jackson has worked in “death and dying” since she was 22. She says her experiences prompted her to have children early in life, and focus on the present, no matter how difficult.
“I practice the art of being present when that present isn’t pleasant,” she said.
Health practitioners like Jackson say their experiences working with dying patients offer insights into love, relationships and how to focus on what matters.
Each of the four practitioners interviewed for this story — a doctor, a social worker, a nurse and a music therapist — say dying patients tend to focus their energy and attention on the people they love.
Dr. Pippa Hawley, a palliative care doctor at the B.C. Cancer Centre, says she has seen couples and families reconcile after decades apart. She’s also seen several of her dying patients get married in the palliative care unit, sometimes in their beds.
Hawley says dying patients don’t have time to take loved ones for granted.
“All of that stuff that we bother with on a day-to-day basis just fades into irrelevancy,” she says.
Dying patients face many challenges with their partners, even when they prioritize love.
Melanie McDonald, a social worker who also works in palliative care at the B.C. Cancer Centre, says every couple she helps deals with death differently.
Couples who thrive during difficult moments are often those who can balance sadness with joy and love, she says.
Nurse Jane Webley, who leads Vancouver Coastal Health’s palliative care unit, says the strongest couples are best at honestly communicating their needs, feelings and end-of-life plans.
Webley says patients who find it too difficult to discuss those matters are often the same ones who push loved ones away and face death alone.
“I think that’s a protection mechanism,” she said. “I would say 90 per cent of the time, it’s fear — and that fear is brought about by lack of communication.”
Dr. Hawley says some of her patients are never able to communicate their feelings and needs. Often, she says, that’s been a long-standing issue for them.
“People tend to die as they have lived,” she said.
Talking about death and end-of-life plans is often easier for older couples who are often more in touch with mortality. But Webley says it’s never too soon to have those difficult conversations.
Another challenge couples face when one is dying is learning to give or receive help, health practitioners say.
Social worker McDonald says people who aren’t used to being caregivers, typically men, often struggle when they’re suddenly thrust into that position. But most people learn to take on that role, she says.
Dr. Hawley says patients can face problems as they lose their independence. But she says it’s important for people to let their partners care for them.
“Don’t feel like you’re a burden,” she said. “It’s actually a wonderful gift to be allowed to care for somebody, to show them that you love them.”
All four of the health care practitioners say love at the end of life can take many shapes.
“Love looks differently in different situations,” says social worker McDonald. “Love shows up in the end of life in friendship and in families and pets and faith traditions and all sorts of different ways.”
Humans are sexual beings. This urge does not stop when the clock strikes 60. Or even 90.
Young adults may deny older relatives are having sex, but sexual activity is a strong indicator of healthy aging and vitality. In fact, sexual activity is roughly equal to climbing two flights of stairs.
Sex education and research use a medical model of sexual health focusing mainly on pregnancy, sexually transmitted infections (STIs), and sexual dysfunctions. However, sexuality is complex. Beyond genitals and Kama Sutra-like positions, it considers sexual and gender identity; sensuality; sexual response; intimacy; and positive and negative ways we use our sexuality.
As we age, the complex interplay among biological, psychological, cognitive, socioeconomic, religious and even societal factors, contribute to changes in our roles and responsibilities. For example, changes in physical or cognitive health over time can create differences in analytical thinking, mobility, and health care needs. We also experience changes in work, social and family roles and responsibilities over time. Examples include transitions from working to retirement, parenting to empty-nesting, child-rearing to caring for aging parents or partners.
These changes may alter our sexual desires, expression and the frequency in which we engage in sexual activities with partners. For example, sexual functioning and activity may decrease over time, but having open communication with a partner who is responsive to our needs can increase our feelings of intimacy and desire, and in turn stimulate sexual activity.
Evolving social support and activities may change opportunities for sex and intimacy. Partners may disappear through death or moving away, or appear, such as when meeting new people after moving to an aging community. Over one-third of adults over age 65 use social media or internet technologies. These tools may expand sexual interest or activities by increasing access to sexual aids and partners.
Sex after 60
There are myths, misconceptions and stigma associated with aging and sexuality that hinder older adults’ ability to openly communicate with family, friends and health care professionals. This misinformation limits their access to sexual education, health care, and ultimately, their sexual rights.
The first myth is that older adults are not as sexually attractive or desirable as their younger counterparts. While an 80-year-old may not be as appealing to an 18-year-old, he or she may be very desirable to peers. More importantly, he or she may feel more sexually desirable and confident than their younger self.
A second myth is that older adults lack interest in and desire for sexual activity—and that they are somehow asexual. Research from ongoing national surveys support the ideas that sexual interest, desires and behaviors can decrease over the life course. For example, among women ages 57 years and older, over 80 percent of participants expressed interest in having sex, but less than two-thirds of women surveyed perceived sex as “important,” and fewer than half reported having sex in the previous year. However, the reality is that these trends are not universal among older adults. Results from another recent survey found that 39 percent of men and 17 percent of women ages 75 to 85 years are sexually active.
Another myth is that older adults are so medically fragile that sexual activity is dangerous. This is simply not true in many cases. Recent studies have shown that healthy older adults are more likely to have sex. Even when chronic illnesses are present, sexual abstinence is not a foregone conclusion. For example, a 2012 American Heart Association statement contains evidence-based recommendations about sexual activity among patients with specific cardiovascular conditions. The recommendations generally advise assessing risks with a doctor and disease management, rather than abstention.
There are well-documented relationships between common medical conditions such as heart disease or diabetes and treatment-related effects on sexual functioning. Yet, older adults and their health care providers are not discussing sexual concerns during routine care. Missed opportunities during visits deprive older adults of access to newer treatments and other best practices in sexual medicine, which can impact their mental and physical health.
A bigger problem may be ageist attitudes among providers and internalized ageism in their patients that may interfere with sex education and application of newer standards. The result is that many believe older adults are uninterested in, or lack desire for, sexual activity and cannot engage in these activities.
Love has a lot to do with it
There is more to sexuality than physical acts. While much of the existing research focuses on sexual activity and intercourse as predictors or outcomes, most older adults also desire companionship, intimacy and closeness. Non-intercourse-focused activities, such as hand-holding, cuddling and massage, have not been studied as much as intercourse. Yet, there is reason to believe that they can enhance intimacy. Research about physical and mental health outcomes resulting from older adult sexual activity reveals additional benefits, including reduced cognitive decline, loneliness and depression, and improved reported health status, physical functioning, and other aspects of quality of life.
Discussions should promote understanding about sexual risk behaviors for STIs and effects of physical and cognitive or psychological aging on sexual health and sexuality. To maintain or improve older adults’ sexual health and well-being, health care providers should provide safe and welcoming environments for patient-provider collaboration, resources and interdisciplinary referrals to clinical social workers, sex therapists, physical therapists and other allied health specialties.
While enjoying her seventh decade on the planet, Donna Personna knows her remaining days are numbered. Yet the prospect of her demise doesn’t scare her.
“The end question. ‘The end.’ It’s not a touchy subject for me. I’m irreverent,” said Personna, a transgender woman who grew up in San Jose and now lives in San Francisco. “I have been on the planet for 72 years. I learned long ago this was going to come.”
Personna, a beloved drag performer, playwright, and hairdresser, credits her Mexican heritage with teaching her that death is a part of life. She pointed to the annual Dia de los Muertos holiday — the Day of the Dead in early November — as one example of how, from an early age, she was taught to embrace one’s mortality rather than fear it.
“I am not worried about it. It doesn’t scare me,” said Personna, who graduated with honors from San Jose State University and, for years, owned her own hair salon in Cupertino, which she sold a while back but continues to cut hair at once a month for longtime clients.
Born into a large Baptist family with 16 siblings, Personna remains close with several of her older brothers and their families in the Bay Area. She is confident she can rely on them in the case of emergencies or if her health deteriorates.
“Some of my nieces said, ‘You can live with us,'” said Personna, who has designated one of them the beneficiary of her estate.
Her Plan B, however, is to move into a pueblo outside Guadalupe, Mexico where her Social Security check and personal savings will be worth more.
“I want to spend the rest of my days in Mexico. I don’t want to die in San Francisco,” said Personna. “I am longing to go there.”
Confronting the end of one’s life isn’t easy for the majority of seniors, whether LGBT or straight. Most have not declared an executor for their estate, let alone discussed with their physician what sort of care they want in their dying days.
“It is rooted in the death phobia that North American culture has,” said Brian de Vries, a gay man and professor emeritus of gerontology at San Francisco State University who is a leading expert on end-of-life issues among LGBT seniors.
There are an estimated 2.7 million Americans who are LGBT and 50 years of age or older. Of that age group, 1.1 million are 65 and older. By 2060 LGBT elders in the U.S. are expected to number more than 5 million.
This generation of LGBT seniors differs from its heterosexual counterpart in significant ways, according to aging experts. Most of the LGBT seniors experienced discrimination not only in their day-to-day lives but also in medical settings due to their sexual orientation or gender identity.
LGBT seniors are oftentimes no longer in touch with their birth families, having been ostracized after they came out of the closet. And many don’t have a partner, spouse, or children of their own to rely on as they age.
“The issues around aging alone are particularly meaningful in LGBT seniors,” said Lisa Krinsky, 55, a lesbian who is the director of the LGBT Aging Project at the Fenway Institute in Boston.
And in the case of many older gay men, they lost their families of choice, whether it was their friends, partners, or spouses, to the AIDS epidemic. Thus, they are more likely to be aging alone. And if they are living with HIV, they are largely unprepared for their retirement years having believed they would have died by now.
Dearth of research
For LGBT seniors, living alone “sets them up to more likely need institutional care as one gets older,” said Daniel Stewart, a doctoral student and adjunct professor at Saint Louis University in Missouri.
Stewart and his colleague, Brandy Fox, a Ph.D. student at the university’s Center for Health Care Ethics, presented their research on LGBT older adults’ end-of-life perceptions and preparations at the Gerontological Society of America’s annual conference, held last month in Boston.
“There is not a lot of research on LGBT end of life,” noted Stewart.
Talking about the end of one’s life can be exceedingly difficult for LGBT seniors, according to aging experts, because of their lack of trust in their health care providers or not having close familial or social connections, leaving them without a family member or friend they can turn to and discuss how they want to be cared for as they age.
“We know gay and lesbian seniors delay getting care,” said Kysa M. Christie, Ph.D., a clinical psychologist at the Veterans Affairs Boston Healthcare System during a panel at the aging conference focused on palliative and end-of-life care for LGBT older adults.
The reasons can vary, said Christie, from internalized homophobia and heterocentrism to stress-related stigma and poverty. It is estimated that one in five LGBT seniors, she said, “have no one to call in a crisis. Compare that to one in 50 for heterosexual seniors, so that is a stark difference.”
Fox and Stewart interviewed 17 LGBT seniors living in the Midwest about end-of-life issues. The cohort expressed concerns about being a burden as they aged and largely had unfavorable views of health care settings, particularly religious affiliated hospitals.
As one 78-year-old woman told the researchers, “Me and the medical profession do not get along,” recalled Fox.
De Vries and his colleagues in the field of LGBT aging call the lack of discussions about one’s palliative care needs, from who will be one’s power of attorney to what a person’s advance directives are for their medical care, “the missing conversations.” It is a subject that seniors must repeatedly address as their circumstances and choices may change as they age.
“I like that it is plural, as once you have the conversation people think you are done with it,” said de Vries. “It is hard enough to have the conversation. And once you have it, you want to wipe your hands dry and move on. As if that is it; it is one of many conversations people need to have, I think.”
For several years now de Vries has been involved in research in Canada looking at end-of-life issues among LGBT seniors. In one paper de Vries co-wrote, and is under review at the International Journal of Aging and Human Development for inclusion in a special issue on LGBT aging, he and his colleagues note that evading end-of-life discussions “keeps death ‘in the closet’ — along with one’s hopes, fears, and wishes about their end of life.”
The issue struck close to home for de Vries six years ago when his husband, John Blando, Ph.D., who is also a professor emeritus at SF State having worked there as an instructor/adviser in the Department of Counseling, was diagnosed with Parkinson’s disease. The men, both 62 and together 33 years, began to seriously discuss end-of-life issues, such as how to care for each other, as they drew up their wills and estates. When they moved four years ago from San Francisco to Palm Springs and had to revise their wills, they also completed their advance health care directives and durable powers of attorney.
“These naturally involve deeper discussions about end of life — at least that was our experience,” said de Vries. “Of course, elements of end-of-life discussions have dotted our other conversations as we talk about our plans and hopes for the future. I will admit to some discomfort in some of these conversations — about raising issues that we both fear, about releasing strong emotions — but they ultimately rest on expressions of love and opportunities to share.”
Since the couple retired to Palm Springs, de Vries has continued to work on end-of-life issues and helped launch a group called PALS, short for Planning Ahead for LGBT Seniors. It presents seminars where people can discuss a range of palliative care issues, from entering hospice care to planning one’s funeral.
“We have a funeral home director come in who is gay and talks about his experiences and the issues and the complications he has seen and how they could be mitigated if people only planned ahead,” said de Vries.
He also borrowed a concept from Britain known as a “death cafe,” where people meet socially to talk about death and dying issues. The gatherings are held at least once a month in Palm Springs and attract upward of 20 people or more.
“What is so neat is it is an in-your-face approach to it. It is not a ‘passing away cafe’ or something subtler. It is a death cafe,” said de Vries. “The idea is it just kicks the door open and brings it out of the closet and brings it into a public space and invites people who may not know each other to a safe space to have these conversations.”
For those LGBT people who have thought about how to plan for their end-of-life care, they tend to focus solely on matters related to their death or dying and not the months or years leading up to their final days. As an example, de Vries said when he once asked a focus group of gay men if they had a will or written out their funeral plans, most had. Hardly any of them, however, had determined who in their life would take them to the hospital or pick them up when, and if, they were discharged.
“It kind of provides an entry into this. It is a bit innocuous to ask someone, ‘I need a ride back and someone to sit with me for an hour, would you do that?’ People feel honored to have been asked and that someone cared enough about me to think I could help them with this,” said de Vries.
Asking for help isn’t always easy for LGBT seniors, noted the Fenway Institute’s Krinsky, even when they have family or friends who can assist them. She recalled talking once to a group of 20 older lesbians and asking them if they would be willing to go to the pharmacy for a friend.
“Eighteen said they would go for someone,” said Krinsky.
But when she flipped the question and asked the women if they would request help for themselves in getting their medications from the pharmacy, “only eight hands went up.”
Krinsky refers to such a model of care as “horizontal caregiving,” where a circle of friends, neighbors, and/or co-workers rely on each other to look after one another.
“We see tight families of choice taking care of each other as best as they can,” she said, “as people are concerned about how will I care for myself as I age.”
Such a structure, she said, upends the heteronormative approach of relying on one’s biological family to provide caregiving. It is expected that a married straight couple’s children and grandchildren will look after them in their senior years and that responsibility is passed on with each new generation.
“Right now, we a have a vertical model of multi-generational caregiving,” Krinsky explained.
Even though Personna lives in an LGBT-affirming city like San Francisco and has her family’s support, she is cognizant of the fact that there are still challenges that LGBT seniors must confront.
“Because of my orientation it is totally different than a heterosexual family and their end-of-life situations. So many things are already in place for them,’ she said. “By law you get things and your family connection is built in. My community, we have to build that and do the work. People my age usually don’t have what the heterosexual person has, like built in grandkids to come over and take you to lunch.”
Five years ago Personna moved from Cupertino into the city to help care for her friend, Bill Bowers, 71, a member of the famed gender-bending group the Cockettes whose outrageously designed jackets became a must-have for rock stars such as the members of the Rolling Stones and Led Zeppelin.
Bowers, a gay man who is HIV-positive, had been living alone at the Derek Silva Community when he had a stroke that left him unconscious for two days in his studio apartment. After that episode, he moved into a two-bedroom unit so that he would have a roommate who could look after him. After he lost his first roommate to cancer, Bowers asked Personna to move in.
“I can’t live alone,” said Bowers. “I asked Donna because she was traveling back and forth from the city to Cupertino on weekends to move in. She is here to be my caregiver.”
Personna not only ensures Bowers makes it to his various medical appointments and takes his daily regimen of medications but also provides companionship. They also share many of the same friends and can reminisce about their younger days in the city.
Bowers has designated an executor for his estate and thought about how he would prefer to be cared for at the end of his life. For example, he doesn’t want to be put on life support should it come to that.
He expects to live out his days in San Francisco, though Bowers said if he could afford it he would spend the rest of his days in Paris or somewhere tropical, like Tahiti or the jungles of South America.
Unafraid of death, Bowers is concerned about how he will die.
“I don’t want to suffer,” he said. “I watched my former roommate go through weeks of suffering. I don’t want to go through that or have someone have to watch me suffer.”
Grief, as you might have sadly discovered, is like a river that takes us where it wants us to go. We can’t stop those heartbreaking reality waves of anguish but we can learn to once again drift with purpose. Getting there is rough, because no matter how many well-meaning friends tell you “time heals all wounds,” there are just some losses we get “through” but we never get “over.” No grief is like your grief because no relationship was quite like yours.
Grieving the loss of a loved one is horrific enough, but it is even harder when you’re a member of the LGBTQ community. I know. I’ve felt this disenfranchised grief. Gay grief is marginalized. Many of us, depending on where we live and what kind of network we have, are excluded from experiencing society’s mourning process.
My girlfriend of 14.5 years died five years before same sex marriage was made legal. While I was the health care proxy and caregiver, I’m haunted that I was not able to file a wrongful death suit regarding medical malpractice because I was not an “immediate family” member. I was not invited to the funeral hosted by her family. And compared to many of my gay sisters and brothers, I got off easy.
There are thousands of members of our community who cannot even tell their employers that the love of their life has died for fear of losing their job, and much worse.
We’ve made significant inroads in the past decade. But despite legislation on same-sex marriage, a push for tougher anti-hate crime laws, and the World Health Organization’s declassification of transgender people as ‘mentally ill,’ the prejudice has not gone away.
The current administration has unleashed a culture of hate that is once again stacking the deck against us. They have erased LGBTQ terminology from various government forms. Beautiful families with same-sex parents are scrambling to lock down their rights in the event that rulings are overturned. Many are forced to conceal their true selves for fear of harassment. This dread and anxiety, especially among our trans family members, is making access to proper healthcare a terrifying experience.
Homosexuality is illegal in 73 countries. While not criminal in the U.S., there is a menacing climate present that ranges from wedding cake controversies to harassment and beatings.
If you lose your precious love, you might be denied a proper grieving process. This grief is forceful, commanding and unpredictable. We must grieve the loss of our loved one and the person we became with our love by our side.
If a long-term illness is the ultimate cause of death, will the medical staff be considerate and respectful of your relationship? How will you manage the discussions with the funeral home and cemetery arrangements? Will it be difficult to deal with your dear mate’s family? Are you afraid to tell your boss and co-workers about your relationship? These are questions straight people never have to ask.
Gay grief is often not taken as seriously as the bereavement process is for a hetero relationship. Co-workers, neighbors, and so forth, might not have any gay people in their circle of friends and don’t know what to say. They might not even try to console you. You might be completely ignored.
It’s important to stick close to like-minded people, your LGBTQ family, friends and straight allies. The good kids on the block. If your gay community is small or non-existent, reach out to online resources including the Human Rights Campaign, The Trevor Project and Parents & Friends of Lesbians & Gays (PFLAG) to make connections.
Look for a place to put your pain. Create a memory box with notes, cards, mementoes and souvenirs of your love. Write a letter and say all the things you wished you had time to say. Schedule a grieving session with yourself every day or week until the rushing river begins to subside a bit. Consider joining a grief group, but wait for the loss to really settle in — that could take four to six months.
Finding a gay grief group is, of course, the optimum situation. Talk about your grief with caring people. Reminisce. It helps.
A naming opportunity offers much solace. Find a charity building a walkway or other structure and buy a brick, for example, with your loved one’s name on it. Contribute to a program that places park benches in your town inscribed with your loved one’s name. If this is not an option, plant a flowering shrub or tree to honor your lost love. Watch it flourish and blossom every spring.
Plan holidays and special dates of observance in advance so you won’t be alone or succumb to last minute plans with callous people who don’t, won’t or can’t acknowledge your loss.
Join organizations, get involved. You might be able to help someone who is also grieving this traumatic death of a love.
Above all, be grateful for the time you spent with this cherished partner. Your life was better for having them in your world. It changed you, it shaped you. Take the golden moments with you. Grief is a war, but you are a survivor.