When Roxanne Stanard was eight years old, her grandmother suffered an aneurysm. Stanard stepped in to help. It was the beginning of a lifetime of caregiving that Stanard embraced for the next five decades until her beloved wife Chris died in 2013.

Stanard, who lives in Charlotte, has been a caregiver for her grandmother, mother, father and wife – all of whom have since died.

“I was a caregiver by nature. I was told I was going to be the one to take care of the family and take care of the land,” she said. 

Stanard, 62, is one of the approximately 2.7 million LGBT older adults living in the United States. That number is expected to double by 2030. Despite advances in LGBTQ rights such as marriage equality and non-discrimination ordinances, LGBTQ individuals still fear and often face discrimination from care providers. According to a 2015 study by AARP and the National Alliance for Caregiving, there are at least 34.2 million Americans providing unpaid care to another adult over age 50. Caregiving impacts an individual’s ability to work full-time and be a productive worker when on the job. Caregivers interviewed for this story retired or sold businesses once they transitioned from spouse to caregiver. 

Ginger Walker, former president of the LGBTQ Democrats of North Carolina, takes care of her wife Concetta Caliendo, former president of the Democratic Women of North Carolina, who has dementia. The two have been a force in LGBTQ advocacy on a state and local level. Walker says the signs of dementia were subtle such as Caliendo forgot information that was given to her. Eventually it worsened, and Caliendo, 71, began having difficulty consistently communicating coherently.

Walker is her primary caregiver with help from close friends. Caliendo walks in the neighborhood and their neighbors keep an eye on her. She enjoys the pool, but “she’s lost all interest in politics,” Walker said. Caliendo received the Order of the Longleaf Pine in 2020.

“We still find joy,” Walker says. “She’s still happy.”

Walker is thankful that she can still take care of Caliendo, but others face the heart wrenching decision of putting their loved one into a facility. Many LGBTQ individuals go back into the closet for fear of being mistreated at a facility. A 2010 survey co-authored by SAGE, a national advocacy and service organization for LGBTQ+ elders, and other LGBTQ organizations found that discrimination ranged from bullying by other residents, refusal of admission or abrupt discharge and other forms of harassment. 

Pride in Care North Carolina is a free cultural competency training initiative for skilled nursing facilities. Training addresses: LGBT Affirmative Language, LGBT History & Experiences, Residents’ Rights and Best Practices for Creating an Inclusive Skilled Nursing Facility. It’s a train the trainer model so attendees can educate additional facility staff.

Katie Kutcher, Assistant Aging Programs Director, Centralina Agency on Aging, says any staff members who interact with patients should be trained not just nurses. She says providers should ensure that anti-discrimination policies include gender identity and there are anti-bullying policies to prevent patients from bullying other patients. For now, Pride in Care is only offered to skilled nursing facilities because of the stipulation of the funding grant, but eventually it may be offered to other types of providers. 

Austin Caton, Centralina’s Family Caregiving Aging Specialist, plans to start an LGBTQ support group for caregivers. Despite working in the healthcare industry, Caton has experienced discrimination. When he set up homecare for his mother, an employee quoted a Bible verse when he mentioned his husband. The religious challenge is big, he said.

“We’re not trying to contradict your religious teachings,” he said. “We’re asking you to provide compassionate care to people, they’re human beings.

Make A Plan

Advocates emphasize the importance of asking questions of potential providers. SAGE’s website offers multiple resource guides. Cindy Hostetler and wife Elizabeth Pruett own Careweavers, a healthcare advocacy company in Charlotte. They are registered nurses. They go to doctor’s visits, help plan hospital discharge, healthcare crisis management and assist families with death plans. During the pandemic they helped clients set up mini-rehab facilities in their homes. 

Hostetler, 58, said people tend to reach out when there is a crisis, but families should create a plan before a crisis occurs.

“Nobody wants to talk about their own mortality,” she said.

She added, “A lot of men are aging alone. They don’t know what to do. They don’t know how to reach out for help.”

Identify a caregiving team whether its family, friends, neighbors or church members. For example, who can take the patient to a doctor’s appointment, who can help prepare meals or help with pets? 

“Once you become a caregiver, you lose the essence of the previous role – spouse or daughter – you become the caregiver,” she said. “It’s important not to lose those things.”

Often the primary caregiver doesn’t want to reach out for help, but one individual can’t do it alone. Experts say typically caregivers don’t take care of themselves, get enough rest, or find healthy ways to cope.

Walker cleans the pool for her personal downtime. Kutcher said Centralina provides vouchers so caregivers can get a break for a couple of hours to run errands or just do something that provides selfcare.

The other key to preparation is legal planning.

Attorney Connie Vetter says straight or gay, people should at least have a durable power of attorney, a will, a healthcare power of attorney and an advanced directive for a natural death if desired. Documents should be signed by two neutral witnesses and notarized, and they can be registered.  

“I encourage people to go ahead and plan their final arrangements and pay for them,” she added.  

She says if an LGBTQ person is estranged from their family, it is critical to document preferences such as name, pronoun and attire. Make a plan for your pets. If possible, plan and pay for the funeral arrangements in advance, she said. 

A lot of people assume that being legally married alleviates the need for legal documents such as durable power of attorney and healthcare power of attorney, but that isn’t the case.

You Never Know

Joy, who asked that her last name not be used, and Elaine were high school sweethearts. This year was supposed to be their 50/70 year. They’ve been married for 50 years and each turned 70 this year, but this year didn’t turn out as expected. Elaine suffered a cardiac arrest last September. She flatlined but was resuscitated. She was in the hospital until last December. Joy stayed with her. She made sure that the staff treated her with dignity and that she was only attended to by female nurses. She is a transgender woman and wouldn’t be comfortable with male nurses. Joy also made sure Elaine had a private room.

After Elaine was released, she went home with Joy, a retired nurse. Elaine can’t do anything for herself. Joy tried taking care of her alone in their Chapel Hill home. Elaine was well known in the LGBTQ community in Chapel Hill where they lived. Elaine served on boards, helped trans individuals obtain driver’s licenses and assisted people with transitioning at work. A few friends reached out. 

“People, just kind of went away,” Joy said. “That was kind of hurtful at how they let her down. They were my acquaintances too.”

She eventually hired a home health aide that she immediately bonded with earlier this year. She moved to Virginia last month to be closer to one of their two sons. Joy and others say have conversations with your partner now. What will you do if you can’t advocate for yourself? Elaine was riding her bike when she had the cardiac arrest. 

“You never know when that moment happens, and then they’re not in your life the way they used to be,” she said. 

Stanard’s wife Chris, then 64, died two years before same-sex marriage became legal, but they wore wedding bands anyway. They did financial paperwork such as power of attorney, car loans and rites of survivorship, but Chris didn’t want to discuss living wills and healthcare documents.

Over the years when they battled various health issues, such as Chris’ stroke and Stanard’s surgeries, medical staff assumed they were sisters. They answered questions without using pronouns.

“It was just easier to let people think what they wanted to think,” said Stanard, 62. “We didn’t want that kind of problem. It would be tiring having to deal with people’s reaction when they realized that I wasn’t married to a man.”

“Truthfully, I wish she were alive today. I would love for us to have that time when we could just be authentic.”

In a country obsessed with youth and vitality, embracing aging and planning for end of life is overlooked and often discouraged. Yet, death is inevitable. Too often members of the LGBTQ community, especially men, die alone. It shouldn’t be and doesn’t have to be that way.

This story is part of Qnotes’ special project “OUTlook: Finding Solutions for LGBTQ Labor and Workplace Equality.” It is supported by the Solutions Journalism Network.