Patricia Nell Warren

In Memory of Bob -- Or What "the Right to Healthcare" Should Mean for Our Elders

Filed By Patricia Nell Warren | July 05, 2009 5:30 PM | comments

Filed in: Living, Living, Living, Marriage Equality
Tags: elderly gays and lesbians, Gay and Lesbian Elder Housing, gay seniors, GLEH, hospice care for LGBT people, lesbian seniors, LGBT elder healthcare, LGBT elders, SAGE, seniors

Last week, the four of us laid our friend Bob to rest in the memorial park where three generations of his family are buried. He had just turned 73, and wanted his bones to be buried beside those of a beloved grandfather, rather than the parents who cold-shouldered him after he came out. Tyler, Adam and David, who are gay male associates of mine, had tended Bob during his final weeks of dying from a rare form of bone cancer.

Bobgraveside2.jpgAs the hot San Fernando breeze rustled leaves on the park's magnificent shade trees all around us, we laid roses on the casket, and said our final words. Then Adam sang Bob's favorite song, "Edelweiss" from The Sound of Music.

Finally, when the mortuary crew had covered the casket with its vault lid, and the vault was being cranked down into its raw hole, we gently threw those handfuls of earth that signify closure.

Closure indeed. For Bob, it was the end of being a cipher in a "gay community" that still doesn't fully recognize its 3 million LGBT seniors and their health issues.

The fact is, when Bob was dying, he found himself in a Catch 22. He didn't want to die in the hospital, so he got himself discharged into a home hospice situation that was covered by his insurance. But at this sensitive moment of his life, he experienced a massive discrimination by his own community. Since he wasn't dying of AIDS, there was no LGBT org to provide him with some local gay-friendly hospice volunteers -- the kind of care for our own that we have routinely provided to people dying of AIDS, starting early in the epidemic.

In short, Bob could have died alone at his home, between the daily visits by a non-gay nurse and caregivers who were strangers to him.

Defining the Problem

Right now, our "community" is yelling angrily at government about its failure to provide adequate healthcare for all Americans...for its failure to grant equality in healthcare and health benefits for all LGBT Americans. The activist group who recently wrote the Dallas Principles declare that "every person should have access to affordable, high quality, and culturally competent health care without discrimination."

Meanwhile, AIDS activists are angry at the Dallas Principle group for not mentioning AIDS in their declaration. They're also angry at state and federal government over deep budget cuts in AIDS treatment and care.

But I have a bone to pick with both the AIDS activists and the Dallas Principles activists. The Dallas declaration should mention AIDS...but it should be done on a short list of other LGBT health concerns. These, too, are urgent: lesbian and bi women's health, medical needs of gender transition, child care for LGBT families, and the looming health problems of our own elderly Baby Boomers.

Twenty years of AIDS have somehow left many of our people with the impression that AIDS is the most urgent health issue facing our "community." According to the Washington Blade, "Of the more than 1 million Americans living with HIV, 74 percent are men, and of those men, between 67-72 percent of them contracted the disease via gay sex. National estimates suggest that 25 percent of white gay men are living with HIV, compared to 50 percent of black gay men." Every time that AIDS funding or AIDS policy is put at risk by budget cuts or anti-gay political maneuvering, activists explode with protest.

Yet I submit that our most urgent health challenge is our failure to see how diverse our health challenges really are.

There are nearly 11 million LGBT people in the U.S., going by various estimates. Seldom are the targeted health needs of this larger population ever mentioned during the loud political debates that we're having, beyond the legal issues that relate to marriage and partnering. The Dallas declaration was content to mention "health" as a generic thing. Generic is okay for straights -- but not for us. Why? Because even the routine care that straights get has often been denied to us by homophobia and inequality under the law. And if health isn't a right, I don't know what is.

Like the rest of the U.S. population, our LGBT population is aging. Rainbow Zine recently reported, "According to the National Lesbian and Gay Task Force, concomitant with the overall aging of the Baby Boomer generation (those born between 1945-62), there are currently 3 million elder LGBT people in the U.S. NLGTF estimates that within 20 years, that number will double."

Most Americans don't deal well with aging. But many LGBT Americans deal with aging even less well. Bob in his pajamas, with age spots and stress marking his face, and the lumps on his torso signaling terminal tumors, was not the image of "fabulous" that our self-styled community likes to project. Says LezGetReal: "The gay community views anyone over the age of 35 as a senior." My friend John Selig puts it more bluntly. He says, "The minute you don't look good enough to cut it at a White Party, you're supposed to gracefully disappear."

Yet the lined faces like Bob's -- not all those fabulous air-brushed faces that we see on magazine covers and movie ads -- are the final faces that our "community" wears, and the final human statements that it makes.

Ironically, many of those 3 million elders are men living with AIDS -- individuals who were diagnosed back in the 1980s and '90s, who are long-term survivors of both disease and drug side effects, and are now in their 60s and 70s. According to Mark Cichocki RN, HIV/AIDS nurse educator at the U of Michigan HIV/AIDS Treatment Program, "In fact, gay men over the age of 50 is a growing population." Many of these men are black and Latino. Sad to say, these men now realize that they're being short-shrifted not just once, but twice -- especially the low-income men. They now face not only the budget cuts that will make AIDS treatment unavailable, but also the lack of care for their routine health woes of the elderly.

A "gray gay" commented sadly to Boston Phoenix, "I know that AIDS and surviving/living [with] HIV has taken up a lot of our energy, but what are we all going to do in our old age if and when it comes?"

Some Improvement, But Not Enough

In 2000, I wrote an expose on LGBT ageism, titled "Elephant Graveyards." The long article must have struck a nerve, because it has been widely reprinted, even outside of the U.S., from the UK to Australia. In the decade since then, I've seen some improvement in the LGBT resources-for-elders scene. A few organizations, like SAGE and Prime Timers, have been around for a long time. Community centers in some bigger urban areas do have their elders resources. But if you're gay and gray and live outside of those resource-rich metro areas, you're likely to be out of luck.

But even today, much of the focus of elders' resources tends to be social, rather than medical in nature. The National Coalition for LGBT Health doesn't actually talk much about healthcare for the aging in their newly published "Guiding Principles" -- even though the organization talks a lot about how LGBT health needs extend across many boundaries, including race, gender, etc. Likewise, the Gay & Lesbian Medical Assn. (GLMA) doesn't have much to say about actual geriatric healthcare either.

Geriatric healthcare involves a wide range of concerns. Our older people don't just suffer from physical trials like arthritis, hearing and sight problems. Many of us also struggle with chronic (even suicidal) depression, because of our growing social isolation and our worry over vanishing finances, vanishing independence and dwindling mobility. Last but not least, there is the hair-raising issue of how, and where, and if, we can manage our own dying with dignity and comfort -- especially if we live in a place like Oklahoma or Idaho.

Unfortunately elder housing is a related worry. There are only a few LGBT low-income elder housing projects and senior retirement villages in the U.S. -- not nearly enough to service those of the 3 million who can't afford to go on living in their own homes or condos. If you can't qualify for a low-income project (like GLEH in Los Angeles), or if you can't afford to get into one of those few LGBT retirement villages that you sometimes read about, you're stuck with the mainstream facilities. There, sad to say, LGBT men and women generally find they have to go back in the closet and give up a long-time partner in self-defense. They do this because of the relentless homophobia that is often practiced by mainstream retirement villages and nursing homes -- and because they have no other option.

Today, with recession cutting ever deeper, the number of LGBT seniors who have run out of luck, economically, and find themselves on the street, or close to it, is probably growing every month.

Bob's Quiet Bio

Until Bob ran into his Catch 22, he was lucky. He was not going to be one of those low-income HIV+ positive gay men who winds up indigent when his money runs out. He had worked in the Los Angeles County Health Department for many years, effecting some changes in policy. So he knew how to work the system and get what he needed. He had a good pension and a little family trust to live on, plus he had excellent health insurance with Kaiser.

Indeed, Bob escaped a run-in with AIDS. He came out late in life. Though he was a handsome and distinguished-looking older man, always well-dressed, he was extremely shy, not socially outgoing. As a result, he was rebuffed by so many men in gay bars and other social situations that he made his own discovery about gay ageism. And he concluded that the "gay community" was not any friendlier than the "straight community" he'd left behind. What saved Bob from a broken heart was a dream he had. For him, being gay was never just about having fabulous sex. It was about having the warmth and support of gay-male family and friends around him.

Around 1990, feeling drawn to entertainment, Bob shifted careers and created a cable show with himself as host. He added another dream -- hoping to launch a theater workshop someday. About that time, he met publicist Tyler St. Mark, who hired him as an associate in his public relations firm. He and Tyler, who was twenty years his junior, became business colleagues and good friends. Bob shared his workshop dream with Tyler.

That was how I met Bob in 1992, when I became a client of Tyler's firm and Bob did advancing on my appearances. With his quiet wit and unflappable efficiency, he always did a great job. His crisp conservative dress always sparked questions as to whether he was my Secret Service guy.

In 1995, Bob's health seemed to hit a blip, and his energy flagged. So he retired and moved away from Los Angeles. For a time, we lost touch with him. Finally Tyler tracked him down... and learned the truth. Bob had been diagnosed with multiple myeloma. He had moved to southern Orange County, in order to take advantage of better medical facilities that his insurer offered there. Unfortunately the area was not exactly a gay mecca. Even in Laguna Beach, the once-vibrant little gay and lesbian community -- one that used to be such a thorn in the sides of OC conservatives -- was withering away. But Bob had taken up a hermit's life in a tiny senior unit, keeping himself busy with reading, TV and tending to his weekly cancer treatments.

Isolated there in OC, Bob never gave up his deeply felt connection to the "gay community," even though he had found it such an unwelcoming place for an older man. He subscribed to The Advocate, and made donations to favorite LGBT charities. On his personal calendar, he always pencilled the important events all over the country -- Pride festivals, film festivals and the like. But he never attended the local events because he could not drive under the meds.

With contact re-established during Bob's last few years, Tyler became his mainstay of family. When Tyler made the one-hour drives to visit him, he often took a pie I'd made. Bob loved my pumpkin pie specialty. Depending upon his cancer treatments, some days were better than others. On the good days, Tyler and Bob would take walks, watch movies, and laugh over their former adventures while working together in the entertainment business. Tyler introduced Bob to the Internet, which Bob explored eagerly to keep up on happenings in gay politics and entertainment.

One day, looking around at the dreary little apartment, Tyler said, "Hey, Bob, let's redecorate. That's what gay men do, right?"

Bob thought it was a great idea, and had the fun of seeing his modest little apartment become a showcase of taste.

Additionally, Tyler reminded Bob of his one-time dream to create a theater workshop -- one where both veteran and amateur, young and old, performers could collaborate on classic plays and learn from each other. Bob's world suddenly had new meaning, and he set about making plans and searching for the right location to locate his theater group.

Meanwhile, Tyler introduced Bob to his closest friends, first Adam, then David, whom Bob dubbed "My Boys" when they were all together. We all thought it was this new goal of the workshop that suddenly revitalized Bob and gave him seemingly endless energy and enthusiasm.

But when Bob's treatments ceased to be effective and he suddenly took a turn for the worst, we realized that the revitalizing factor was the long-dreamed-of gay fellowship that had finally come true for Bob. It had rekindled Bob's passion for life and kept him going.

So how did Bob succeed in not dying alone at home? Adam and David joined with Tyler to form a volunteer hospice team. They worked with Bob's professional care-providers who came in daily to make sure he was comfortable and not in pain. All three of them drove the hour to Orange County every few days, switching out, to make sure Bob always had someone with him.

At the end -- thanks to three men friends who cared -- Bob had the gay family and the comforted death that he'd wanted. During his last days, they surrounded him with flowers and good food and stories and laughter. On the afternoon of June 16, with the "The Boys" holding his hands and Adam singing "Edelweiss," Bob slipped away into the spirit world.

My Point Is...

We're all hoping that the government will finally give us the rights to healthcare, and the access to it, that we need. But the government can't do it all, especially in this time of global recession and drastic cut-backs on government health spending. The LGBT "community" will have to meet government halfway. Back in the 1980s, we made the huge effort for those needs of the AIDS epidemic. Now, in this stressful postmillennial time, we have to do better than that.

In spite of vanishing personal income and shrinking institutional resources right in our own demographic, we have to pull off a new miracle. We have to figure out a way to expand our service outreach so that it's adequate for our health needs of the 2000s -- not just for people living with HIV/AIDS, but for everybody else. Our service organizations need to help all LGBT people deal with mainstream healthcare bureaucracy. They need to be effective conduits for whatever federal, state and local funding may still be targeted for us. For instance, we need to find free dental care for newly-out teens whose teeth are rotting because their homophobic parents threw them out and refused to provide routine dental care. We have to do way better on the needs of our women, of transgendered and intersex people, of our disabled. We need to help our own returning Iraqi and Afghanistan veterans who are coming home shocked and depressed from what they've seen in combat.

Most of all, the 2000s call for a massive consciousness-raising on the subject of our own aging Boomers. What are we willing to do for them? When sex and fabulousness is over, where is the healing power of family? How can we call ourselves a "community" if we don't do what we can to care for all the different populations in our "town" -- especially those who are nearing the end of their life-journey?


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karen in kalifornia | July 5, 2009 6:57 PM

As always, insightful, full of information, and well written. Thanks.

Remember the LGBT Health summit is happening in Chicago this August. A great time to get together and become active in the Healthcare equality movement for ALL individuals in the LGBT Community.

As an ever-aging gray gay, long-time AIDS survivor-activist, who has enthusiastically subscribed to the Dallas Principles, may I say:

B R A V A !

The truth of what you have written resonates like nothing else I've read lately. Bob would be so proud of you, and of The Boys, too. Thank you so much for sharing his story. It is a universal one.

I earnestly hope your writing will inspire leaders to to arise to meet the very real needs of "community" you address in this post.

Patricia,

Thank you for writing about Bob. I found his story a bit of an emotional roller coaster, poignant and so real.

I am a 64 year old gay man, open about my HIV/AIDS status. Bob's story could be my story too or that of any older GLBT person. Luckily for Bob and luckily for me, we both had a lot to be optimistic about and goals to strive for.

I hope you had a chance to read my story. If not, here is the link to the original story: http://positivelyaware.com/2008/08_05/personal_story.html

You have always meant so much to me as The Front Runner was one of the first books I read. I think I should read it again.

Patricia,

Thank you for writing about Bob. I found his story a bit of an emotional roller coaster, poignant and so real.

I am a 64 year old gay man, open about my HIV/AIDS status. Bob's story could be my story too or that of any older GLBT person. Luckily for Bob and luckily for me, we both had a lot to be optimistic about and goals to strive for.

I hope you had a chance to read my story. If not, here is the link to the original story: http://positivelyaware.com/2008/08_05/personal_story.html or http://www.bilerico.com/2008/09/learning_to_live_and_love_all_over_again.php

You have always meant so much to me as The Front Runner was one of the first books I read. I think I should read it again.

Robert Ganshorn Robert Ganshorn | July 6, 2009 12:16 AM

My grounding in the Gay life included men and women of all ages. We forget today that there had been a network of "aunties" in the lives of all coming out Gay men and Lesbian women. Older mentors who were not there to exploit the younger ones, but provide needed guidance. In return we created our own families. We need desperately to come back to that simple unselfish way of thinking.

Liberation is not just about what we get from government, it is what we give ourselves.

Thank you Patricia, condolences to you on the passing of your friend.

Robert Ganshorn Robert Ganshorn | July 6, 2009 8:54 AM

And, of course you are right about access to federal funding, but we need Gay people who are willing to nurture elder Gays, Bisexuals, Trans, and Lesbian. (I dare not just call us all Gay!) Even if it is to stop by once a week to read a newspaper or book aloud to the sight impaired, play a game of cards, take someone for a drive. Simple enrichment brings such an improved level of quality to life. People who are good at this are miracle workers.

Bill Perdue Bill Perdue | July 6, 2009 12:55 AM

That was a very moving post, Patricia.

Guaranteed nutrition, good housing and healthcare for everyone, paid for by the US government, would let millions of seniors live out their lives without making choices between eating, buying medicines or using utilities. However we all know that’s not going to happen.

Instead of that I'm afraid that things are going to get worse for seniors, LBGT or otherwise. Unemployment is growing at about 500,000 to 750,000 per month and now stands at 9.5%. A measure of how close the Clinton-Bush recession is to becoming a depression is the 'real' rate, measured by the Bureau of Labor Statistics' "Alternative measures of labor underutilization", at 16.5%. That figure is still undercounted because it doesn’t include immigrant and imported workers.

By way of comparison in 1931, well into the Great Depression the GNP was falling steadily (down 8.5% from 1930) with unemployment rising to 15.9%.

http://www.bls.gov/news.release/empsit.t12.htm

beachcomberT | July 6, 2009 7:28 AM

My small gay-affirming church in Daytona Beach yesterday lost one of its longtime members, Charlie, at 88. His partner of 50+ years had died a year earlier, and Charlie had to move to a nursing home. One of our straight church members made a 50-mile round trip every Sunday to make sure Charlie could continue attending our services. It was his only remaining contact with his gay "family" and it meant a lot to him.
I'm sure this same scenario is taking place in hundreds of other gay-friendly churches as well. Many LGBT people deride organized religion as being hypocritical, anti-gay, money-hungry and personality cults for egotistical pastors. Yes, churches and temples have lots of failings but for many frail seniors, they are the one remaining lifeline, helping to make sure the seniors get health care, help with household chores and a little friendship in their final days. Gays in mid-life need to take time out from the party circuit and think seriously about how will age, and who they can rely on for caregiving when that time comes. Thanks for a powerful reminder, Patricia.

John R. Selig | July 6, 2009 8:12 AM

There is a lot about being gay that we should collectively take pride in. However, this is a white elephant in the room that is very sad. You have brought the subject into the light as only you can Patricia. I suggests that others send links to this column far and wide.

Rick Sours | July 6, 2009 8:44 AM

Thanks for this article on a subject which needs
to be addressed.

Erich Riesenberg | July 6, 2009 11:01 AM

Yes, thank you for this article.

Bob seems like a good guy. I appreciate shy yet interesting people.

For myself, I don't see much distinction between myself as I age and a straight single person. I anticipate very similar challenges.

Donn Murray | July 6, 2009 12:39 PM

Thank you Patricia. As a 72 year old gay man who somehow dodged the AIDS bullet, I found your article heartbreaking and informative. The "gay family" has always been so supportive in my life although sadly, many friends I planned to grow old with, are now gone.

Wonderful article Patricia, like I read earlier...BRAVA!

I am the David that Patricia wrote about. I must say that it was a pleasure and honor to be Bob's friend and assist him in his final days/hours.

I often wonder, why does my community feel so disjointed to me? We don't seem very united, we don't seem to care outside the realm of AIDS health care, taking care of 'our' seniors. I wonder what it is going to take for a true united cause of rights. Health care of our seniors seems like it makes it to the bottom of the list. I guess I should be grateful that it is at least on the list albeit at the bottom of it.

Where did the humanity of my community go?

Where did the compassion of my community go?

Bob would have been proud of this article Patricia... and loved!

Robert Ganshorn Robert Ganshorn | July 7, 2009 10:03 AM

David, Napoleon made a comment about China 200 years ago that is apt: "She is a sleeping giant, let her sleep for when she wakes she will shake the world."

This too can be the GLBTQ Community. It needs to wake up, drop the nonsense, and share it's own vast resources with it's own, and above all unify for it's own good.

Thanks to all of you for hearing the message of Bob's story. It is past time for the "community" to get itself in gear on this issue.