A few years ago, a client of mine named Louise died very suddenly. She was the sole caregiver for her longtime partner, Estelle. Estelle had a number of grave health problems, including rapidly advancing dementia, and Louise, who was energetic and of sound mind, was Estelle’s sole caregiver. I didn’t expect Louise to die first. But she did.
In the weeks leading up to her death, Louise had contemplated marrying Estelle. The possibility of “making it legal” had recently become real for gay and lesbian couples, under the Marriage Equality Act. Louise understood that if Estelle ended up in the hospital, married status would guarantee her visiting rights which otherwise were not automatically assured. “If we were straight people,” she told me, “I could just saunter in and say, ‘I need to see my boyfriend.’ But for us, there’s no guarantee.” Depends who you get at the reception desk.”
Life is hard for any person grappling with dementia. But for people who aren’t straight, it’s even harder. This is not just the legal obstacles, nor is it only the casual discrimination which LGBT people routinely endure. It’s also the lack of family support, whether from an adult child, a spouse, or a sibling, which many straight people take as a given.
About half the caregivers for people with dementia whom I meet are adult children. In Louise and Estelle’s generation, adoption was not neither a legal possibility nor a social one. If a gay person had any children at all, it was usually because he or she had married while closeted.
Louise had come to New York from “elsewhere.” This is the case for most gay New Yorkers, who seek refuge here because of the city’s relative tolerance.The fact that most gay, lesbian and trans people are basically immigrants means that, if they get sick, they are less likely than straight people to have a sibling or cousin whom they could call upon to get care.
Sometimes it’s not just that relatives are far away; often family relationships are fraught, or even broken. Estelle had been born nearby but, knowing that her family would not accept her as she is, had lost contact with them decades ago.
The only person I knew that Louise and Estelle had in their circle was a devoted niece, who “got it.” Maybe there were other family members. But no one but the niece came to the memorial service.
So where have LGBT people turned to for care, if not to their families of origin? I recently learned a term-of-art from Ryan Kiranne, the coordinator for the Silver Connections senior programs at The Loft, Westchester County’s LGBT center for adults.
The term Ryan taught us is “chosen family.” One’s chosen family is comprised of the people who, irrespective of how they came into your life, have stuck with you, through thick and thin. When I recently heard Ryan speak about LGBT people living with dementia, I got a chance to ask him, “What is the thing you need dementia professionals to understand about the community you work with?” he replied: “Expand your definition of family.”A brief written by the Alzheimer’s Association and the LGBT senior advocacy group SAGE, elaborates:
“Often when people say the word ‘family’ they mean the nuclear family —or biological and legal relatives. Many LGBT people either do not have a relationship with their family of origin, or they may have strained relationships. Many do not have children or a partner. LGBT people may have a chosen family, or family of choice, who provide them with care and support. When discussing family members or other supports, consider using terms like ‘network of support,’ ‘chosen family’ or ‘loved ones’ and make it clear that family does not necessarily mean family of origin or children or partner.”
For me, as the director of an organization whose work and mission are to bring volunteers face-to-face with people with dementia, “chosen families” sounds like the kind of community which all of us, gay and straight, strive together to build.
By expanding the definition of family we at Seivah Intentionally expand the circle of the potentially isolated individuals community. And how well “chosen family” articulates our volunteers’ experience of becoming “like family” after visiting and being with people with dementia and their caregivers.
I’ll end with a reprise.
In the process of writing this account I contacted Louise’s niece to find out how Estelle is now. Her response speaks to the heart of the need for an expanded definition of family:
“Estelle is now completely bedridden and beside me and the cleaning lady is completely alone in this world. Talking of nuclear family – Martha, the cleaning lady is Estelle’s caregiver and between Martha and her daughter in law they make sure she is washed and fed and well taken care of. Martha was a Godsend to both Louise and Estelle and cared for them better than many children care for their parents.”
For the Silver Connections program at The Loft: (http://www.loftgaycenter.org/silver_connections_55_group)
For the brief from the Alzheimer’s Association and SAGE on LGBT seniors living with dementia:
For an informative and moving film about the lives of older gay people, see: “Gen Silent”: https://www.youtube.com/watch?v=fV3O8qz6Y5g