Category: 50 Stories for 50 Years

“My name is Carolyn Barnes and I live in senior housing in Northwest Washington. This is the first time I have ever testified before the D.C. City Council, so I ask your patience if I seem a little nervous.”

With these words, Carolyn Barnes began her February 2016 testimony before the City Council’s Committee on Health and Human Services. A resident of Regency House, Mrs. Barnes was there to talk about a Medicaid program that provides free home health aides to qualified seniors and people with disabilities. Called the EPD Waiver program, its purpose is to help individuals stay in their homes rather than go into nursing homes.

In 2006, doctors put five screws in Mrs. Barnes’ back to address a spine condition. She’s been in debilitating pain ever since.

For most of the past decade, she has had a home health aide who helped with grocery shopping, picked up prescriptions, and accompanied her to doctor’s appointments, among other activities. The aides were paid by a long-term care insurance policy she purchased.

Two years ago, her Iona case manager, Randy Smith, noticed that Mrs. Barnes’ insurance money was running out and told her that the EPD Waiver program would provide her with a free aide. That aide started last February – around the time her insurance money was about to run out and she would have been on her own.

“The EPD Waiver program has worked well for me,” Mrs. Barnes, who is 69, told the City Council. “I’ve been very happy with my aide. But because of a bureaucratic scare, I nearly lost her.”

Enter Randy Smith. A journalist-turned social worker who has been working as an Iona case manager for six years, “Randy really knows how to navigate D.C. government programs,” says Iona’s Executive Director Sally White.

A former newspaper reporter, Randy doesn’t take no for an answer. “I greatly appreciate being able to use my previous experience dealing with all branches of government to get results for individuals,” he says.

With Randy’s help, Mrs. Barnes – and countless other Iona clients – have benefited from government services for which they qualify. Many didn’t know those opportunities even existed.

“Mrs. Barnes was down to her last dollar,” says Sally. “I hate to think about the outcome if she didn’t have Randy in her corner.”

While Randy frequently testifies before the City Council, it is Mrs. Barnes, he says, who was the best one to share her story. “I wasn’t there to help myself,” she says. “I testified in hopes that it will help other senior citizens who need help in order to stay in their homes.” As for her initial anxiety about speaking in public, Mrs. Barnes said it made all the difference to have Randy by her side. “Once I started, I couldn’t stop,” says the newly empowered advocate. “I just had to speak my mind.”

“I wish everyone had a Randy Smith in her life,” she adds. “Once you have all your ducks in a row, and all your questions answered, it’s smooth sailing.”

When Suzanne Gentes’ husband passed away in May of 2015, she had anticipated feeling the deep grief of losing a spouse. What she didn’t expect, however, was feeling an additional loss from saying goodbye to friends in Iona’s caregiver support group for spouses and partners of people with dementia.

Over several years, Suzanne had come to rely on the group as a safe space to vent, laugh, and cry with people in similar situations. “The group really helped a lot, and in a way, I had a circle of caregivers to take care of me,” says Suzanne.

After her husband died, it was difficult not to have that continued support. And, while she tried bereavement groups with other area organizations, there was always something missing, as Suzanne found that few addressed her important caregiver role. Knowing that Iona had been there during her caregiving journey, Suzanne turned to Iona again in her grief.

The timing was meant to be. Just a month prior, Iona psychotherapist and support group manager Bill Amt had surveyed former Iona caregiver support group members to learn more about their caregiving journeys and gather feedback on how Iona could better support them.

Additionally, Bill was also investigating bereavement group models. “As the support group manager, I’m always thinking, ‘What more do we need?’” says Bill. “When I looked at Iona’s menu of offerings, I saw that there was a gap.”

With Suzanne’s help, Iona was able to fill that gap.

Using feedback from Suzanne’s personal experience, along with best practices, Bill and Iona’s Director of Consultation, Care Management, and Counseling Deb Rubenstein designed Iona’s newest group: the After Caregiving Support Group. Its first meeting was in April.

Unlike other grief groups Suzanne tried, Iona’s After Caregiving Support Group focuses on not only grief, but also caregiver identity and transition, says Iona social worker Liza Chapkosvky, who co-facilitates the group with Elizabeth Buchanek, an experienced volunteer. “When you’re a longtime caregiver, your identity is so wrapped up in that experience,” says Liza. “When it’s done, you might have a wide range of emotions and you’re also trying to figure out, ‘what’s next for me.’”

The group, then, helps members process their grief, as well as think about next steps. It’s also a great space to share resources, literature, and success stories for self-care, adds Suzanne. And, of course, having a circle of caregivers is a welcome return for Suzanne. “It’s nice to have people again who care enough to listen and to share their grief with you,” she says. “It’s a wonderful reminder that despite the darkness, there is some light out there.”

A resident of Glover Park, Jessica, 30, was looking for a volunteer opportunity near her neighborhood. Having grown up in Tennessee in a multi- generational household and earned a degree in public health, she wanted to work with older adults. “When I was a child, my mother’s parents lived with us part of the year and my father’s parents lived close by. In D.C., I missed being part of a community of all ages.”

At the Active Wellness Program at St. Alban’s, where she does a little bit of everything, Jessica is known as the “lunch lady.” Her favorite part: getting to know the participants – active older adults who come for lunch and a range of activities. But the friendships don’t end there. She frequently runs into her St. Alban’s friends on the bus, in the grocery store, or on the street. “Iona has expanded my community,” she says. “That’s a big part of what keeps me coming back.”

Her professional interests drew her to volunteer with the D.C. Coalition on Long Term Care. The Coalition is committed to expanding and improving the quality of the District’s long-term care programs so that low-income residents with chronic care and/or disability needs can age in the community safely and with dignity. “Our role is to make sure members of the D.C. City Council know – especially during budget season – that people in the community care and are paying attention to funding that is vital to older adults,” says Jessica, who has helped draft testimony. “There’s a thrill in shadowing Judith Levy (the Coalition’s coordinator), who knows everyone and everything about long-term care.”

In 2015, Jessica began volunteering in the Wellness & Arts Center, Iona’s adult day health program for older adults with dementia, intellectual disabilities, Parkinson’s, and other chronic conditions. “What strikes me is how invested the staff is in the participants’ experiences. You don’t see that everywhere.”

“Many folks my age say they are not sure what it would be like to volunteer with seniors,” she says. “They don’t understand it’s really fun to work with older people, including folks with dementia. A lot of people are afraid of that.

They think it must be depressing. But it’s the complete opposite. Sharon O’Connor, director of the Wellness & Arts Center, says: ‘It’s like being on a cruise ship every day.’ It’s such a happy place.”

“Volunteering at Iona lifts my spirits and grounds my week,” she adds. “I can go in there stressed and I leave feeling really good. It may seem counterintuitive to folks who haven’t had the chance to experience it.” Jessica, who gave birth to her first child over the summer, recently returned to the Wellness & Arts Center to introduce Erin to the participants. Many of them had offered her parenting advice last spring — pearls of wisdom that Jessica will undoubtedly value for many years to come.

In February 2015, Gavin Lawrence’s 78-year-old mother — who has dementia — disappeared from her DC condo. Gavin — who lives in Chicago — credits Iona nurse practitioner Fiona Druy and social worker Catherine Paitz with getting him through that crisis and many other challenges.

“Mom was a trailblazer,” says Gavin. A native of Guyana, she was the first in her family to come to the U.S. where she earned her PhD, raised Gavin on her own, and taught literature and African American history at Howard University. “She’s always been independent,” he says.

That became more challenging when she had heart surgery in 1995, a minor stroke in 2000, and, over time, developed dementia. In 2008, she took early retirement from Howard.

At the same time, Gavin was struggling to care for her from his home in Chicago, where he also was raising two children. In addition, his work as a stage actor takes him all over the country. (You may have seen him in “Ma Rainey’s Black Bottom” at Arena Stage).

In November, Gavin and several relatives decided it would be best for his mother to return to Guyana, where her sister and a live-in nurse could care for her. That turned out to be “miserable for everyone,” says Gavin. His mother stopped eating and lost weight. She was unhappy, frustrated, and angry. “She thought she had been kidnapped,” Gavin says.

So the family moved her back to DC and, with Iona’s help, began looking for safe housing options. Still, that conversation always ended with her saying she wasn’t moving.

Then came the call every family member who has a loved one with dementia fears. His mother was missing. After a frantic search, relatives found her near American University, disoriented and alone.

In the weeks that followed, Gavin was plagued by questions such as: “Do I want her happy — or safe” and feelings of guilt that grew out of the fact that, in his culture, most elders live with their adult children until they die.

Throughout the experience, it was Iona’s staff that helped him to navigate these emotional and practical issues. “They have been nothing short of angels,” he says. “They spoke directly and frankly with my mother about the benefits of assisted living in a way that reinforced what I needed to do,” says Gavin, who moved his mother into a senior living community in June. “Until the move, Catherine and Fiona visited my mother in her condo twice a week. They were professional and personal, compassionate, and honest. They were the one little light in the midst of a lot of darkness.”

If you or someone you know needs help navigating eldercare issues, call Iona at (202) 895-9448, and ask for our Helpline.