What do LGBT seniors want? Like most older adults, they want to age in place comfortably and be treated with respect and care, says Christopher MacLellan.
Affectionately known as “The Bow Tie Guy" in many caregiving circles, MacLellan cared for his partner, Richard, until he passed away of esophageal cancer in March 2014. After receiving the diagnosis in 2011, MacLellan started his caregiving blog The Purple Jacket to record his and Richard's journey through cancer caregiving. He continues to be an ardent advocate for LGBT seniors and caregivers as a Certified Senior Advisor (CSA), Certified Caregiving Consultant (CCC), author of What's the Deal with Caregiving?, and a speaker who presents regularly on topics that impact family caregivers and LGBT seniors.
Why LGBT Housing Isn't the Answer
While their care preferences are universal, the needs of LGBT seniors and caregivers are unique. Will they feel welcome in a senior living community, and would same sex visitation be permitted? Can they speak openly about their lives without retribution? Are professional caregivers and staff—whether at home or in a senior living setting—attuned to their special needs?
MacLellan doesn't believe the push for LGBT-only housing is the solution. "It's a great concept, but it's not sustainable," he says. His vision? LGBT culturally competent sensitivity training for workers in all areas of senior care (from home health agencies to retirement homes, hospitals to hospice) so LGBT seniors can live peacefully and don't have to hide in their own home, MacLellan says. "Are the aides sensitive, and will they be comfortable if they see a picture of the caree's partner on the nightstand?" A top-down systems change approach providing safe aging in place options for all LGBT seniors, regardless of where they live, is a better goal. Says MacLellan, "In order to feel comfortable, they have to be safe."
Finding a safe place online to share concerns and challenges with other LGBT seniors and caregivers is important too, particularly for those who don't yet feel safe or comfortable in community settings. Check out online support groups and caregiver-focused podcasts, like MacLellan's Blog Talk Radio show, Healing Ties.
Implications for Healthcare: A "History Lesson"
Moving forward means remembering the past. "We have to remember that those in their late 70s and early 80s today are coming out of a system where it was illegal to be gay," says MacLellan. "It's a slippery slope for seniors: That's why some don't self-identify or even tell their doctors, regardless of whether they are sexually active or not." This isolation can lead some older adults to hide their depression from family members or others who want to intervene and help.
Marriage equality, while a victory for LGBT seniors in terms of protecting couples' equal legal rights, does not guarantee protection from prejudice. "LGBT caregivers can face more hurdles when dealing with with our health care and legal system simply because of social stigma and in some cases, personal bigotry," says MacLellan. He stresses the importance of LGBT cultural competency training, particularly among health providers. "LGBT caregivers are not seeking special treatment, they just want to feel safe and secure when interacting with health care providers in order to simply care for the one they love."
After diagnosis, the oncologist gave Richard, MacLellan's partner, three to four months to live. But MacLellan's care and advocacy made a life-changing difference: "Because he could age in place at home—comfortably and peacefully—he got 29 extra months," he says. (Get glimpses of their experience in this Pulitzer Prize-nominated news story, In Sickness and In Health: A Couple's Final Journey.)
Being An Advocate
Families have not always been kind or accepting of its LGBT members, though some may show up at their doorstep—even after 20 years of no involvement, per MacLellan—following an illness or death. As a result, many LGBT seniors wrestle with the decision to burden their families or not with their care needs, opting to rely on contemporaries and peers for support instead. "There is often not a positive association with the family of origin," says MacLellan.
Without the family lens, many LGBT caregivers are better able to honor the older adult's end of life preferences—though sometimes, family trumps the LGBT caregiver's rights. An hour and a half after Richard's death, MacLellan received a call stating that he had no say in decisions about Richard's remains despite papers the couple had filled out before his illness and death.
It comes down to being an advocate, MacLellan says, and in that role, the caregiver ensures a loved one's safety and follows his or her final wishes—a universal preference. "LGBT caregivers share in the same joys and struggles that any family caregiver faces because caregiving has no gender or orientation boundaries."
Do you know your loved one's wishes? Are they in writing? Read Why You Should Take Your Dad on a Date to learn more about end of life decision-making and planning.