A mother’s love; a daughter’s journey
This is a story of the immense love between a mother and a daughter, about the bond they share in the face of overwhelming challenges, about how we cope with grief and loss — and how we choose to spend the time we have together.
Beth Rigsbee was 18 months old when she had her first seizure. By age 5, she was experiencing 60 a week — including episodes that forced her to wear a helmet to prevent her from hurting herself. “It was like an invisible person would just slam her to the floor,” her mother, Cindy West Rigsbee, remembers.
Neurologists diagnosed Beth with Lennox-Gastaut Syndrome, a rare form of epilepsy that accounts for just 2-5% of childhood epilepsy cases. The intensity of Beth’s seizures left lasting impacts. Now 47, she has required full-time care for her entire life. Cindy has been Beth’s primary caregiver.
In January 2023, Cindy was diagnosed with terminal pancreatic cancer. For the first time, Cindy had to consider what Beth’s life will look like after her death.
Cindy continues to care for Beth at their home in Durham, N.C., “preparing for the worst but hoping for the best.” She works to arrange care for a future for Beth without her in it, while hoping that this uncertain future is still far away.
Cindy gives Beth a kiss on the cheek before climbing into bed on July 26, 2023. Beth has lived at home for 45 of her 47 years of life, a reality made financially feasible through the state’s Innovations Waiver program. The waiver, which is part of North Carolina's Medicaid program, includes up to 87 hours a week of one-on-one in-home caregiving support for Beth. However, in order to receive an Innovations Waiver, families must apply for a slot — and in North Carolina, waiting lists are on average 10 years long. The Rigsbees, who applied when Beth was a young adult, waited nearly 10 years before receiving their waiver.
Cindy cooks Beth breakfast on the morning of July 27, 2023. Following her cancer diagnosis, Cindy’s friends began delivering meals to her house to ease the burden of cooking. Being cared for in this way was a new feeling for Cindy. “It’s always just depended on me,” Cindy said. “Well, I don't care if you do feel bad,” Cindy used to tell herself. “You got to get up and you got to cope.”
Cindy helps Beth get ready for the Kings and Queens Dance, a prom hosted by a local nonprofit, Reality Ministries, that works with adults of all abilities in the Triangle area of North Carolina. Prior to the COVID-19 pandemic, Cindy regularly employed caregivers through their Innovations Waiver to help care for Beth. However, following the pandemic there is a growing shortage of working caregivers available through the Medicaid system, and help has proved difficult to find. For the first nine months after her diagnosis, Cindy says she continued to call the agency who manages her waiver and ask for direct care support help with Beth — and the agency told her they were “working on it”.
Cindy paints Beth’s nails before the Night to Shine Prom on Feb. 23, 2024. Cindy tries to let Beth be as independent as she can, and that includes choosing her own outfits.
Beth gets ready for a horseback riding lesson at Bright Star Stables in Rougemont, N.C. on June 25, 2023. Beth has participated in the Special Olympics Horseback Riding program for more than 20 years. Cindy says she thinks Beth enjoys it because it’s a moment where she gets to be in control: to tell the horse what to do, rather than someone trying to tell her what to do.
Cindy comforts Beth after she fell and hurt her knee during the Special Olympics Horseback Riding competition in Tryon, N.C. on Sept. 24, 2023.
Cindy drives Beth to her Special Olympics Horseback Riding competition on Sept. 23, 2023. From age 12 to 14, Beth lived in a group home for children with intellectual and developmental disabilities. “It was the best thing that I ever, I think, did for her,” Cindy said, “even though it ripped my heart out because I thought I had failed as a parent because I couldn't keep my own child.” During that time, Beth learned how to dress herself, take a shower, tie her shoes, clean the kitchen, set the table and mop and sweep the floor. However, when Cindy came to pick Beth up for a dentist appointment and found the only caregiver on duty asleep on the couch, Beth’s meds still in the cabinet, she no longer trusted her daughter would be taken care of. Beth has lived at home ever since.
While Cindy prepares for a CT scan at Duke Cancer Center on Oct. 20, 2023, Beth watches from behind the machine. The scan was Beth’s first trip with Cindy to the Cancer Center. “That’s my mama,” Beth told the nurses. “I love her.”
Beth rests her head on her hand as she sits in Cindy’s office on July 26, 2023. Though Cindy talks openly with Beth about her cancer prognosis, Beth has only said anything about her diagnosis once. “I’m not ready for mama to go to heaven,” she said one afternoon.
Cindy and Beth share a moment before going to sleep on the evening of July 26, 2023. The two have shared a bedroom for more than a decade. Cindy plans to move into their garage when her cancer progresses to avoid having memories of her being sick in the room she shares with her daughter. Despite the uncertainty for the future, Cindy tries to remain positive. “One thing [Beth] has taught me is just to take it a day at a time,” Cindy says. “Let’s live in the moment. Let’s not worry about tomorrow, let’s do what we can today so that we have a tomorrow.”