How Caregivers Use Storytelling to Promote Self-Care

When you’re a caregiver, it’s easy to lose yourself in the role and neglect your own care. Abiola Keller, PhD, MPH , wanted to change that. While working in Black communities to promote and protect women’s health — with an emphasis on caregivers — Dr. Keller, an associate professor and the interim associate dean for research at the Marquette University College of Nursing in Milwaukee, realized that these women have stories to tell. She wondered if giving them a way to share their voices could also encourage healthier behaviors. “Black women will take care of everyone but themselves,” she says. And the notion of the strong Black woman who keeps smiling through difficulty and immense responsibility does not help. The idea of starting a digital storytelling project quickly took shape. Given the 53 million caregivers in the United States, the timing seemed right: More than 1 in 5 Americans are unpaid family caregivers supporting an adult or child with special needs, according to a caregiving report from AARP and the National Alliance for Caregiving.e60dc2a1-f33c-4a05-9b50-8e3e8e597629afec1d5d-a9ac-42a6-a784-4bd132d46eb9 And 60 percent of those caregivers also have jobs outside the home — a juggling act that can take quite a toll. Research shows that the stress from caregiving can affect caregivers in many ways, including an increased risk of health conditions like depression , obesity , heart disease, and cancer, among others.e60dc2a1-f33c-4a05-9b50-8e3e8e597629ce251032-2dcb-4d72-96f3-c9f3109c232a Those stats are sobering for America’s roughly 4.5 million Black women caregivers.e60dc2a1-f33c-4a05-9b50-8e3e8e597629afec1d5d-a9ac-42a6-a784-4bd132d46eb9 “In Black families, we don’t identify as caregivers — it’s just what you do. The question is whether the caregiving role is expected or chosen,” says Keller. “Caregivers can lose themselves — it becomes who they are.” With financial support from the Rita and Alex Hillman Foundation and Marquette University’s Institute for Women’s Leadership and College of Nursing’s Wallace Impact Fund , Keller was able to start her study. Small groups of women from the Milwaukee area gathered in story circles over several sessions to share a specific moment from their caregiving journey. The women wrote scripts, recorded themselves on video, and then added music and photos to produce a two- to three-minute segment about their personal stories. “We had to keep recentering them to remind them that the moment was about them, not the person they were taking care of,” says Keller. While the sessions were not intended to be group therapy, healing happened organically. “When they heard how others were walking a similar journey and that they weren’t alone, it was empowering. They shared resources,” says Keller, and a sense of community quickly formed. Keller wanted the women to walk away with new skills, but the greater intention was to get them to focus more on themselves . With more awareness of self-care, she hoped they would make better choices for themselves, ultimately improving their health and reducing their risk of diseases like cancer and cardiovascular disease , the No. 1 killer of Black women.e60dc2a1-f33c-4a05-9b50-8e3e8e5976293a5f017d-0213-4017-ac0b-38a8f7ca3c2f After seeing positive results in two groups of women, Keller is now thinking about the next phase of her study: digital storytelling on a larger scale for the wider Milwaukee community. “Some women didn’t think they had a story to tell,” she says. “But by the time they finished, not only did they realize they had a story — their story also mattered.” Three women who participated in the study shared their experiences. Yolanda Radford-Sartin
In October 2022, life changed for Yolanda Radford-Sartin. Her mother, a breast cancer survivor, had a bad fall. So Yolanda brought her mom to live with her. “I felt like she couldn’t be alone after that,” says Yolanda of her now 89-year-old mother, who has also slowed down due to Alzheimer’s. Yolanda, 56, retired from her job as a nurse and nurse educator shortly afterward because she knew she didn’t want to move her mother to a nursing care facility. “I have nursing skills,” she says, which made her feel equipped to handle her mother’s care. Also a full-time associate pastor, Yolanda juggles her church duties with caregiving. She is grateful that her husband handles the cooking, and a cousin and godmother help when they can. But trusting others to care for her mother as she does can be hard, so she does most of the heavy lifting herself. “Getting support is an issue, as is getting sleep. I only sleep about four or five hours a night,” she says. Participating in the study and creating her video was a good escape. “It was a break from my reality,” she says. “The final product was rewarding,” she says, but what she took away from the experience was much more than a video. “Caregivers need to take care of themselves,” she says. “I realized I needed to do a better job of taking care of myself.” Following the study, Yolanda started riding an elliptical bike for at least 20 minutes a day, though she knows that’s hardly enough to manage her stress . She also finds joy in writing poetry and running the faith-based greeting card business she started. She and her husband took an eight-day cruise of the eastern Caribbean in January. During the trip, her mother went back to her own home, where Yolanda’s brother and other relatives looked after her and “handled things very well,” she says. There will be more vacations, but at the moment, Yolanda is taking days as they come. “It’s an honor to take care of my mother,” she says. “It’s the right thing to do. She took care of me.” Shontelle Gwin
In 2019 at age 16, Shontelle Gwin’s son, Kalen, was diagnosed with aplastic anemia , a rare condition in which the body stops producing enough new blood cells.e60dc2a1-f33c-4a05-9b50-8e3e8e597629c8d27ce8-2c77-4d41-ae58-5dc67f760872 For the next five years, Shontelle worked feverishly to help find a donor for the blood stem cell transplant he needed, including running blood drives and raising awareness about the need for Black Americans to become blood donors and join the NMDP donor registry . “There are disparities in the donor system. I feared he wouldn’t get a donor,” says Shontelle. “We had one donor back out. It was a journey.” Finally, in November 2024, Kalen had a successful bone marrow transplant. But Shontelle never felt as if she had a particular story to tell: “I just thought I was doing what a mother does,” she says. After she got involved in Keller’s study, she saw things differently. “The women made me feel that my caregiver role was validated — that I was doing my best,” she says. “They encouraged me when I thought the donor campaign wasn’t working, and they gave me my second wind to not give up on finding a donor.” The storytelling sessions taught Shontelle to face her fears differently. “I’ve got power I didn’t have before,” she says. “I realized that I had taken the pain of the ordeal and turned it into something purposeful for the community, educating them about the need for African American donors.” Shontelle’s video begins and ends with poems she wrote for the project: “Wonderland,” a world in which things are ideal, and “Cancer,” which recalls the disease’s impact on the entire family (her mom died from cancer). Photos of Kalen as a young boy and teen are shown as she tells of the harrowing day when he fainted, was rushed to the hospital, and then received his diagnosis. She talks of the challenges she faced and how she felt alone at times, and also gives gratitude for the support of the hospital staff at Children’s Wisconsin , who saw them through the ordeal. So far, Kalen’s body has 100 percent accepted his donor’s cells. The full recovery process can take about a year. Shontelle, who is 49 and lives with diabetes, is now taking better care of herself by resting more, reading, baking bread, and writing — a book may even be on the horizon. Her daughter also does her hair once a month, and sometimes they enjoy facials and pedicures at the spa. Wanda B.
When Wanda B.’s brother, who had been taking care of their 84-year-old mother, died suddenly in 2022, Wanda became her mother’s primary caregiver practically overnight. “I brought her to my house, and it was traumatic for both her and me,” she says. Her mother has dementia , doesn’t walk on her own, and needs help with everyday activities. “She depends on me 24/7, and she’s bedbound,” says Wanda, who does not want to disclose her full name for privacy reasons. Being thrust into caregiving so unprepared has at times been overwhelming and isolating for Wanda, who is 64 and retired from her job as a city administrator so she could take care of her mother full time. When she learned about Keller’s storytelling study, she was eager to take part, thinking it would be like group therapy. “I was ready to share my pain,” she says. But when she arrived for the first session, she realized the focus would be more uplifting. “It was therapeutic, hearing all the caregiver’s stories. They were each different but intertwined,” she says. “We became a community. I didn’t feel like I was in this by myself.” Wanda enjoyed putting her video together and, through the project, renewed her commitment to herself. The project “showed us the importance of self-care . We often put our own needs to the side. We don’t go to our doctor’s appointments or get our hair or nails done,” she says. “I learned we have to sneak this in when we can. When we take care of ourselves, we can better take care of others.” She admits to being drained, especially when her mother’s dementia provokes challenging behavior. But moving her mother into a nursing home is not an option. “That’s not what we do in the Black community — we pooh-pooh putting your parent in a facility,” she says. “On hard days, though, I’ve had thoughts about putting her somewhere, because it feels like this is too much for me.” Because she has heard only bad stories about nursing homes, she continues in her caregiving role. “I feel guilty even thinking about putting her in a facility,” she says. Wanda does occasionally have some support. Her husband will stay with her mother so that Wanda can go out to dinner with a friend. And a few times a year, her son, daughter, and grandchild take care of her mother so that she can go to the ocean to relax and recharge. In 2024, she managed to take off three weeks. In her video, Wanda highlights how healing the ocean is for her. “It’s where I relax, recharge, reset,” she says, adding that taking a break at the beach allows her to pause and de-stress from the daily grind of caregiving. “Sitting on a beach and listening to the waves is very calming and restorative to my soul,” she says. Wanda encourages others to focus on themselves , too. “Make time to get away for a moment. You deserve it!” she says. “You can’t forget about yourself.”



Source link