A few years ago, Georgette’s sister started experiencing medical complications. While Georgette lived in New York City, her sister and her family lived in Atlanta, where her husband worked. It was decided that the medical complications were serious enough that Georgette’s sister should travel to New York for treatment so Georgette could be there to help her. Neither Georgette nor her sister realized that the magnitude of the treatment needed would end up being both a heart and kidney transplant.
The unexpected shock of her sister needing not one, but two organ transplants, set the tone for Georgette’s caregiving experience. Luckily, she felt well-supported by the medical team. They prepared her for what to expect of a transplant and what was involved, and the social worker at the hospital provided her with information. They also introduced her and her sister to a support group of other transplant recipients and caregivers for them to connect with.
Georgette’s sister was only on the waitlist for her transplant for about a month, meaning the entire family had to adjust and process the situation very quickly. Her sister was in the hospital for three months following her transplant, and that was the most stressful time of Georgette’s caregiving experience. Nothing could have prepared her for the shock of seeing her sister for the first time after her surgery.
During the three-month hospital stay, Georgette had to run back and forth from the hospital to check on and spend time with her sister while also juggling her work schedule. Luckily, her job was flexible with her work location, so she did not have to travel far. Georgette also took over caring for her niece while her sister was in the hospital, and she was responsible for her school schedule.
Although Georgette felt supported by the healthcare team and they provided a huge amount of support in navigating the financial aspects of receiving a transplant, Georgette did not feel they were necessarily there for her, especially after her sister was discharged. Although they spent some time with her niece as the daughter of the transplant patient, she thinks it would have been helpful if they had checked in on how she was doing mentally, and she feels she would have needed this if her sister’s recovery had been longer.
When her sister was ready to go home, the healthcare team provided her and Georgette with information on her medications, and this was an aspect that Georgette’s sister was able to handle on her own. Throughout the transplant experience, Georgette and her sister had the support of their family, and once discharged, they purchased a house together so Georgette could continue to help care for her sister. Georgette’s husband was also able to start acting as another caregiver, providing Georgette with an additional level of support.
To better prepare and support caregivers for their role, Georgette believes they should be provided with a high-level amount of information, but not be overwhelmed or scared by what they’re being told. She thinks educational videos could be provided so the caregiver can watch them at their leisure and follow-up with any questions. She also really enjoyed the support groups she was a part of and thinks it would be beneficial to have caregiver-only support groups where caregivers can speak more freely. Finally, she believes it’s important to support caregivers financially in the areas that may not be considered, such as providing transportation or parking reimbursement and childcare support.