Cindy Mermin and Helen McDermott Endure, In Love, Together
Remaining positive despite isolation and McDermott's dementia isn't always easy
(Editor's note: This story is part of Taking Care, an ongoing series on the diverse lives of America's family caregivers, with support from The John A. Hartford Foundation.)
While COVID-19 deprives Lucinda "Cindy" Mermin of many activities that keep her spirit alive, one in particular stands out: performing music in front of live audiences. That's but one of the challenges the pandemic has imposed on Mermin as she cares for her wife, Helen McDermott, who lives with dementia.
Uprooting and Disownment
Mermin marvels that the northern Indiana town where she grew up is just 90 miles from South Bend, Ind., where presidential contender Pete Buttigieg served as an openly gay mayor.
"If I had said then that 'God made me this way,' I would have been stoned to death," says the 81-year-old.
Although she never came out to family, Mermin's decision to move to New York City was met with harsh disapproval, especially from her mother, a fundamentalist Christian.
Says Mermin: "I first saw New York on a senior class trip, and then I wandered into a college that my parents had no idea was very radical, Antioch College in Ohio." Mermin was the only girl in her high school class to attend college.
Her mother viewed Mermin as a "heathen" for uprooting to New York City, and the family disowned her. "As my mother said, 'You just went to New York to have sex.' And it turned out that was true. She was right. And love, which she didn't know anything about." Mermin was excluded from her mother's will.
Mermin attempted to conform in other ways. "We all tried to fly straight," she says of the Silent Generation. "I got married, had a child. I got divorced, of course, so I was raising a child alone."
As with many LGBTQ elders, Mermin lacked family to turn to.
Along the way, she earned a Ph.D.; this at a time when coming out as gay was deemed a "character disorder" that could have gotten her kicked out of school. After graduating, Mermin started her own psychiatric practice and buried herself in work.
By all appearances very successful, life took its toll. "I was drinking. That's how I did it. That kind of came crashing down in my thirties," she recalls.
It was through an Alcoholics Anonymous group for medical professionals that Mermin, a clinical psychologist, met Helen McDermott, a clinical sociologist, in 1983.
A year later, McDermott, who grew up in the Bronx, moved in with Mermin. The two bought offices and shared a practice for 25 years. "It was very nice," Mermin says. "We kind of thought that we would do that forever. We didn't plan on this [Helen's memory loss]."
By 2008, it was clear that Helen, now 88, had dementia. This meant selling their practice.
"She's a much more brilliant therapist than I ever was," says Mermin. "She loved being a therapist, so that was very hard for her to have to give it up."
While Mermin continued seeing a few patients in the couple's home, her primary role shifted to caregiver. Like many others thrust into that role, she was unprepared.
"I was not raised to be a caregiver. I wasn't taught that you have to take care of yourself — that you've got to get help," she says, adding: "I've never been very political. I'm suddenly very political about the aging process and dying in this culture."
As with many LGBTQ elders, Mermin lacked family to turn to.
LGBTQ elders are less likely to have the informal support networks, like children and other family members, that many non-LGBTQ people rely on as they age.
Relying instead on friends and family of choice, LGBTQ elders may become isolated as their friends also age or they need to enter a long-term care facility because they lack people to care for them.
Discovering SAGE, a New York-headquartered advocacy and services organization for LGBTQ elders, was a turning point for Mermin.
SAGE has given some respite care to Mermin, who says its caregiver support group has been especially valuable to her over the past six years.
"They've been a really good source of support," she says. "Even though we all have impossible tasks, somehow sharing it — you feel a little less alone and you understand each other."
"Being gay," she continues, "we of our generation really don't have any family involved with us, so it's good. We don't have to explain a lot about ourselves."
Most importantly: "You wouldn't believe that it helps to share such difficult feelings, but it does. You kind of get hope that you can get through it," says Mermin.
Transformations and Transitions
In 2011, something previously unimaginable occurred: the couple married.
"We were the twenty-third couple in line on that first day, that Sunday," Mermin recalls. "There was a lottery. There were like two hundred and fifty LGBTQ] couples that got married that day. There were a few haters out, and there were people with rainbow umbrellas, and they clapped. It was a very moving day."
Another major life event took place a few years ago when the couple downsized due to mounting medical expenses and loss of income.
"'What did I do for my soul today?' Too often, we don't do anything."
While there have been many upsides to their move: a greater sense of community among neighbors, a more manageable space, a well-staffed building and a quieter neighborhood — Mermin recognizes that moving is "one of the worst things you can do to someone with memory loss, so [McDermott's] gotten much more fragile since then."
As for work, giving up their practice was less difficult for Mermin than McDermott.
"I liked being a therapist, but much deeper in me is being a musician. When I turned sixty, I thought, 'Maybe you'd better start doing something you really want to do for yourself.'"
For her, that meant picking up the oboe, the instrument she had played in high school. She'd been performing in the UN Symphony Orchestra, in another at Mannes School of Music at the New School, plus in an opera and a quintet.
"It takes your mind into something else. It's just really lovely," Mermin says.
Just as being a therapist was core to McDermott's identity and the main way she expressed herself, music has become that for Mermin.
Challenges For All in 2020
For three months of the pandemic, Mermin says she barely left home at all.
"We were right at the epicenter, and I was frightened that I might infect [McDermott]," she says. "I was not really depressed, but I felt very withdrawn. I just felt like I was dying inside."
McDermott, by contrast, likes that Mermin rarely goes out.
"She gets nervous if I just go for the mail. She doesn't want me out of her sight ever, but I'm going a little crazy," Mermin says.
Explaining the pandemic to her wife has been difficult, too. Although they read the newspaper together every day, "sometimes she asks why we wear a mask."
Isolation is an ongoing hurdle, especially for Mermin. Online support group meetings, though not the same, remain an important source of connection.
But no one has been in the couple's apartment since March, and Mermin's not gone into anyone else's, either.
Hardest of all, performing music online doesn't cut it for her.
"I'm an oboist, and I'm dying. I feel like I'll probably never get to play in an orchestra again. That makes me the happiest on earth to sit in the orchestra and play my oboe," says Mermin.
Regular trips to a nearby park have stopped as it's grown colder. Conversations with others in the park were "life-affirming for [McDermott]." These days, Mermin says she goes back and forth "between making [McDermott] do stuff" and "letting her be when she just doesn't want to get dressed or she sleeps late." They will resume visits to the park in the spring.
Regaining some sense of community with neighbors in the couple's 250-unit building has been challenging, too.
"Everyone kind of went into their own little bubble," Mermin says of the pandemic's hit.
Morning walks have helped her persevere. "I decided I would just go for a walk in the morning. It would be safe if I went at around seven," she says.
Mermin came to realize that two other women in the building were also feeling alone. They now take turns joining her. "That really helps a lot, just to have a real person to walk with and talk with you," says Mermin. As a bonus, one of the women likes to cook and frequently knocks on the couple's door, bearing soup.
Recently, Mermin signed up for Medicaid, which will pay for a home health aide. Although she's nervous about having someone come in, she says, "I'll get a little respite, but then there's no place to really go." Mermin has keys to apartments of friends who have left the city due to COVID-19.
"I might just go and nap for a while," she says.
Mermin's 5 Caregiving Lessons
Mermin is eager to share these caregiving lessons that may help others:
- Care for yourself. “It helps when I do a little more for myself.”
- Seek help. “Try to get as much as help as you can get. I realized I was raised that there’s something shameful if you need help. Get past that. The person you’re caring for may resist, but don’t let them dictate."
- Reach out to others. “However you can connect with someone, try to. They’re needy, too. You have to be less shy. Know that they also need the companionship. Just try to foster some new connections.”
- Be gentle with yourself. “Don’t hate yourself. I was going to read all of the classics, and I was going to really, really build up my stamina playing the oboe…and I haven’t done any of that.”
- Ask this question: “What did I do for my soul today? Too often, we don’t do anything.”