By Elissa Lee, contributing writer
A gold band adorns Hermina Ban’s left ring finger; his wife’s hands are sprinkled with a garland of chemotherapy bruises.
The couple met in the San Fernando Valley in 1994, discovering that they both had a love for theater, activism and guidance. Ellen Brunot worked as a history teacher and worked as a stage director at night, Ban was a teenage social worker and an avid theater patron.
But for the last 10 years they have been together, Ban has been Brunot’s caregiver.
The loneliness of care and the stress of decision making, Ban shares, weigh on her. “If we had like aunts, close uncles, grandchildren and children, that would be a completely different story,” Ban said.
Around 75% of LGBT adults aged 45 and over expressed concern about having enough support from family and friends as they age. a 2018 AARP report found.
“Several of our LGBT seniors, who came out at a time when they were not allowed to show off their sexuality and gender identity, have lost many of their important relationships, family systems,” said Yelba Carrillo, the program’s former director. of the LA LGBT Center Senior Services. “Many do not have children to trust. And so, as they get older, they don’t have the support that a typical heterosexual person can have. ”
Although both Ban and Brunot’s families have been supportive, Brunot’s relatives are spread across the United States, with no close relatives. Ban, whose nuclear family emigrated from Israel, cared for both his mother until he died in 2020 and his brother who died in 2021.
“When my father passed away, I had my brother, my mother and my wife, and it wasn’t that hard because of them,” Ban said. “When my mother passed away, I had my brother and Ellen. When my brother passed away, Ellen was my stone. I don’t know how I would have treated him without her. May God free me from Ellen’s passing … That’s the most stone. great to take, for me. “
Ban came out when he was 18, right in the countercultural movement of the 70s. “I never felt vulnerable back then, because we were tough, you know? I mean he measured like 5 feet 5 and a half, and he just had a behavior that was a little strong.” .
“We were infallible,” Ban said with a smile. “Those were the fun days, my God. It was about counterculture and going to love.”
In the 1980s, the HIV / AIDS epidemic hit and many of Brunot’s friends became ill and “disappeared. There were the ones we took care of, just a lot of people. “
Carillo says LGBT couples “have these important shared experiences of being closed, going out, having experiences of losing friends, family, loved ones, which strengthens their resilience and strengthens their relationship.”
Brunot worries now that, despite all the victories, they are not safe. “If I had lived periods of time where being gay was illegal, you could lose your job, you would be beaten. I mean, it’s not safe yet. And I think as I got more disabled and we both got older, that started to scare me. more “.
“Backs against the wall”
It started with Brunot’s sudden kidney failure in 2012. Brunot hung up his black clothes and left his job in the theater to start peritoneal dialysis at home. “Every day, I would disconnect in the morning and go to school and give classes, then I would come home in the afternoon and reconnect,” Brunot said.
After getting married in 2016, Ban was showing off his wedding ring to Andy Greene, a work acquaintance who asked him about honeymoon plans. Ban said traveling was not an option due to Brunot’s dialysis, and since Brunot had a rare blood type, The negative, the likelihood of getting a kidney donor was difficult, if not impossible.
Greene was also The Negative.
“I asked him, ‘Well, would you be interested in donating a kidney?’ It was a statement of pull and pull, ”Ban said. “I told her the doctor’s information, but I told her I wasn’t going to press her for it … but she kept coming back and giving me updates, that she’d met with her doctor and found out about the different hoops she had to make. Jump through.”
The woman donated one of her kidneys to Brunot. “I really thought, oh my god, we’ll have a second chance to have a life again,” Ban said.
Brunot recalls, “Everything looked like a miracle, I was going to go back to work and [Ban] he was going to retire, we were going to start traveling, to do all kinds of things ”.
The nephrologist said the six months after the transplant were the most critical. Ban took care of Brunot, who was largely bedridden. But six months after the transplant, Brunot was diagnosed with stage IV cancer, an aggressive and rare ovarian cancer. Doctors told them he had a year to live, two if the treatment worked.
Brunot opted for a treatment, a hysterectomy followed by radiation shifts and chemotherapy for five years, which affected his precious easy kidney. “They’re playing a very delicate and dangerous game with my immune system,” Brunot said of his oncologist and nephrologist, who described his cancer as a Whack-A-Mole.
In December 2021, a second malignant tumor appeared in Brunot’s bladder that has almost doubled in the last six months. In April 2022, his oncologist said chemotherapy was not working. They had burned all options and chemotherapy endangered Brunot’s new kidney function, which had dropped to 23%.
You could choose to remove the bladder, but the cancer could come back. Or he could start immunotherapy, but that meant abandoning the kidney and restarting dialysis.
“Our backs are against the wall,” Ban said.
Fear and vulnerability
Although many older LGBT adults describe positive relationships with their doctor after years of trial and error, more than 50% many have concerns about discrimination or prejudice affecting their quality of care, according to the AARP report.
“Whenever we go to the hospital, I want to dress more professionally informally just because I want them to take me and us seriously and not classify us,” Ban said. “So I think it’s important how we present ourselves and we’ve had, from my point of view, we’ve had nothing but really positive experiences, in terms of how they receive us or how they react to us.”
That fear is ubiquitous. “There has been a history of stigma and discrimination against people who often leave us reluctant to seek help,” said Sherrill Wayland, director of Special Initiatives at Services & Advocacy for GLBT Elders (SAGE). “If I approach, how will they treat me? Will I be welcome? Or will I face discrimination and stigma?
Brunot says he wonders “whether the fact that I am an older woman, or the fact that we are a couple of older women and older women are invisible, if any of that seeps into the calculation unconsciously. How much value do they give to our do you see
Day by day
As Brunot declines and Ban has more responsibility for his care, they decided to go with immunotherapy, knowing that Brunot will return to dialysis soon.
“We’re really between a rock and a hard spot,” Ban says. “I just try to take it one day at a time. It’s the same thing that made me go on, one day at a time.
“I’m not saying he’s calling Yenta and looking for another woman, though I’d love to do that. If I could find him another wife, I would,” Brunot says. “But while I’m thinking about dying and letting go and doing what’s natural in the process, I’m thinking about her. I’m worried about her and she’s worried about me.”
On a good day, Ellen Brunot makes all her landmarks. “I do not pee, I do not fall or break furniture or dishes or injure myself. And I love my wife and I talk to my family on the phone and text messages to my friends and I get endless photos of babies from my nieces and nephews coming from all over the United States. ”
Brunot takes his meals in bed today, on top of colorful animal trays. “I’d rather wear brightly colored birds in the morning and elephant family at night.”
“The color, it lights things up,” Ban said. “I think it’s important to have color to be cheerful.”
The breakfast package includes Brunot pills, gently poured into a large cup of cracked tea, a small joy that sustains a difficult reality. The cup of tea is painted with Sakura, or cherry blossoms, a relic of a past life when they supported the Japanese tea garden in Golden Gate Park.
Brunot had broken the latter of the tea cups and Ban had picked it up again.
Department of Senior Services of the LGBT LA Center offers services or referrals, affordable housing, and scheduling.
SALVIO offers a plethora of resources for LGBTQ + caregivers, provider training, and SAGEConnect, a phone-friendly program that connects volunteers with older LGBT people for weekly phone calls. They have partnered with United Way to offer a free hotline 24 hours a day, 7 days a day: 1-877-360-LGBTQ + (5428)
Memorial Sloan Kettering Cancer Center has compiled a list of LGBTQ cancer support groups
The Campaign for Human Rights publishes an annual Health Equity Index that measures the quality of care in health centers for LGBT patients and families
For older LGBT caretakers, together can still feel alone against aging and illness – Press Telegram Source link For older LGBT caretakers, together can still feel alone against aging and illness – Press Telegram