Geno Swagerty and Wayne Swagerty are two inseparable brothers living in Newport, TN. Geno has dedicated years of his life to being a caregiver, first for his mother, and now for his brother. Wayne lives with cerebral palsy, and Geno says he is “mellow, funny, and overall, a blessing from God.” They have a classic brotherly bond, but it is especially profound due to Wayne’s disability. Wayne let Geno pick him up for the first time when he was 15 years old. Over 35 years later, Geno is one of the only people that Wayne trusts to help him. “He’s arguing with me now because he doesn’t want his face washed” Geno joked. “Somedays I look at him and I want to give up but there’s no sense in giving up after all we’ve been through.”
Years ago, Geno had to choose between caring for his aging and ill mother and his disabled brother or making money. Tennessee does not pay family caregivers, so there was no way to prioritize both his need for income and his family’s need for personalized care. In the end, he chose his family. “I love to work but [Wayne] is my job…I wouldn’t change my life for nothing.” Geno would stay up all night sitting next to their beds making sure they were breathing, then go to bed about 5 o’clock in the morning. “As long as they were in the bed and alright, I was alright.” When his mom passed, her greatest fear was that no one would be able to care for Wayne. Geno made sure to step into that role.
Since Wayne is unable to speak, Geno must make medical decisions for him. He gained custody of Wayne in May 2024 when Wayne stopped breathing. During this life-or-death medical crisis, hospital staff told Geno that he could not be in the ICU with his brother- with no consideration for the fact that Wayne is physically unable to speak. In this moment, Geno realized that the medical industry is not fully equipped to assist adults with severe disabilities, and their families. “I stood my ground with them and told them I am not going nowhere,” he said.
After the hospital visit, the Swagertys felt like they were on a positive path since TennCare had elected to cover some of the cost of Wayne’s care. However, they would not pay beyond the 18 hours of care Geno needed each day. In the remaining hours, Wayne’s aunts help out,– but this means time away from their own households and jobs. Geno feels like society’s preference is for Wayne to be placed in an inpatient facility. This is not what Geno wants for his brother. It took 15 years for Wayne to trust his own brother enough to let Geno lift him- how could Geno send him to an unfamiliar facility with strangers?
While TennCare coverage for Wayne helps significantly cut healthcare costs for the brothers, Geno still has his own medical bills to contend with. Geno attempted to apply for Medicaid, but he did not meet the work requirement of 20 hours a week because he spent that time caring for his brother. In a state that recognized and compensated family caregivers, Geno would have been far above that minimum- but not in Tennessee. Again, he faced choosing between caring for himself or his family. He could increase his working hours to qualify for TennCare, but that would mean sending his brother to an in-patient treatment facility. Marketplace was also not an option because he would have to pay a $600 monthly premium. “I just pray to God that I don’t get sick,” says Geno. He simply cannot afford it.
Geno has ongoing health issues after he suffered a heart attack in 2020. He relies on pharmacy discount cards to pay for his medications, but he still ends up paying 100s of dollars a month. He recently had to pay $1000 out of pocket for a CT scan, and he is trying to figure out how he will afford an upcoming stomach surgery- which is a result of injuries obtained while lifting his brother.
Despite the hardships, Geno remains dedicated to Wayne, finding strength and purpose in his caregiving role. He says, “I wouldn’t change my life for nothing.” But, what he would change is Tennessee and the United States’ attitude toward disabled people and their caregivers. He says he gets the “short end of the stick” since he is not compensated for his labor, but choosing to work outside the home would mean leaving his brother in a stranger’s care. “People that got disabled family members should be able to get insurance,” Geno says. With the proposed Medicaid cuts and increased restrictiveness of work requirements, even more people across our state would be in Geno’s situation.