by Loren A. Olson, MD
I once cared for an aging lesbian who began to have memory problems.
She went to a neurologist who said bluntly, “Get your affairs in order. You have Alzheimer’s disease.” My patient was confused, devastated, and depressed. She asked a companion to accompany her on her return visit. This time the neurologist said, even more bluntly, “I never told you that you have Alzheimer’s disease!” Enraged, her companion suggested that she get a second opinion. The second neurologist compassionately confirmed the diagnosis of Alzheimer’s disease.
Most Americans, especially those over sixty, worry about the quality, access, and affordability of health care. In general, the sicker you are, the less satisfied you are with the care you receive. Writing in the Archives of Internal Medicine in 2008, Jennifer Wolff and Debra Roter suggested that having a companion accompany you to your doctor visits allows even the frailest and most vulnerable to have more confidence in their doctor’s skills, to feel better about the information they receive, and to have a better relationship with their doctor. According to the findings, companions facilitated communication, recorded physicians’ instructions, provided medical history, asked questions, and explained instructions to patients. In addition, they offered moral support, provided transportation, and handled details like appointments and paperwork. The more functions the companion performed, the higher the patient’s satisfaction for the services received.
It is difficult to age well without a social support system, and families often act as a protective buffer. For many LGBT seniors, prejudice disrupted their lives and their connections with their families of origin. When LGBT individuals become estranged from their families, that buffer is removed. They are also less likely to have children of their own. The MetLife study found that more than three-quarters of gay men and women rely on the emotional and social support of their “families of choice” rather than their families of origin.
Both the “Improving the Lives of LGBT Older Adults” report and the MetLife study suggest that those who are partnered have a greater sense of well-being. They tend to have fewer sexual problems, lower levels of regret about their sexual orientation, and less depression. Because gay relationships are misunderstood, when caregiving decisions are made, the roles of the family of origin trump those of the family of choice. Kristijan, whom I wrote about earlier, told me that as his lover lay dying, his lover’s sister pushed Kristijan aside during the final days. She had been estranged from her brother since learning several years before that he was gay, but during his final days she rushed back into his life. The gay community consists of a wide variety of family structures. There are marriages, civil unions, partners with and without children, single parent families, and reconstituted families that were once estranged. It is tragic that Kristijan’s lover’s family of origin, like so many other families, doesn’t accept this.
My friend Bernie described his experience with caregiving in this way:
I did not divorce until after Mom died. My good former wife, Wilma, often said—once she “caught on” [that I was gay]—that if Mom were alive I would have remained married. Talk about my avoidance of who I was then! Later she “came around” and really liked a couple of my partners, especially Carl.
My wife died six years ago of a nonmalignant brain tumor—a slow death over seven years. When she needed constant care and was wheelchair-bound, I took care of her on some weekends to give our oldest daughter some respite. Wilma gracefully lived with Carl and me. She adored Carl, and she often asked him to sing for her. Once I had to go out of state for a speaking engagement and I asked Wilma if she would mind my leaving her in Carl’s care. Without a moment’s hesitation, she chimed, “Go ahead; Carl and I can get along better than you and I used to deal with each other.” Happily, their friendship deepened.
So here is the dilemma for gay people: medical care improves when you have a companion, but more than half of gay men between sixty and seventy-nine years of age live alone. Aging gay seniors also must become assertive about developing a good support system and a family of choice when there is no family of origin available. But the LGBT community must also begin to recognize the needs of gay people who are isolated, alone, and unable to advocate for themselves. This is an increasingly serious challenge for our LGBT community.
Loren Olson is a psychiatrist and author of Finally Out: Letting Go of Living Straight, A Psychiatrist’s Own Story.
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