Gina cares for four people in total: two of her five children and both of her parents. Gina has a 14-year-old son with undiagnosed schizophrenia and diabetes, an 11-year-old son with autism, a father with heart disease, and a mother recovering from a brain tumor. Though she splits the care of her mother with her sister, Gina is a caregiver for them all.
Since Gina’s sons live with her, they get the bulk of her attention. Her 14-year-old son requires diabetes care management, with Gina watching his blood sugar levels and providing medication, and she also sits with him during telehealth therapy sessions while supporting his mental health. To care for her 11-year-old son, she sometimes has to calm him down after episodes. Gina has had to learn how to perform intensive homecare for both children.
Gina’s father had open-heart surgery in 2019 and has no vehicle of his own. Although Gina lives an hour away from her parents, she takes her father to his many post-surgery doctor appointments. Her mother has had three brain surgeries to help treat her brain tumor, and the aftermath of the surgeries has required an increased level of care. Gina assists in helping with her activities of daily living, and her mother needs to be watched constantly due to the dementia-like symptoms she began experiencing after her surgeries.
Gina’s realization that she was a caregiver hit her when she began creating a program to help others who provide care for family members or friends. As she did the research, she realized that she fit the description exactly, and that she was, in fact, a caregiver. However, this did not change how she treated or thought about her experience; somebody has to take care of her family, and she is the one to do it.
Gina finds caregiving most challenging with all the appointments she has to juggle in order to care for four people. Often, she finds herself responsible for delivering someone to two or three appointments in one day, and she has to manage her time and the technicalities of doing so. Yet, through the process, she has seen her son get better, which she finds rewarding. It’s tangible proof that her caring for him is helping.
Gina has a background working at a group home, so she had some previous knowledge of how to find resources to help care for her sons. However, no one, in the medical field or otherwise, has offered her resources or ways to find help, and Gina has had to do the research on her own time.
She cannot imagine how she would have done so if she hadn’t known where to start thanks to her work at the group home. Gina has never had to anyone ask what she needs to take care of her own health and does not believe she has the time to do so. To her, she’s lucky if her kids are in bed on time and she has a few hours to herself to read.
Like many African Americans, Gina’s culture has affected her caregiving in that she believes family should take care of family. Alongside this belief, she and her mother both worked in nursing homes in the past, and Gina has experienced instances where paid caregivers do not provide a good level of care, while for her, family caregivers always do. When reaching out to diverse family caregivers on health matters such as vaccines, Gina thinks it’s very important for the information to come from a reliable, neutral, and 100 percent factual medical source.
The pandemic has made it harder for Gina to provide care. Her sons are high risk, so she is nervous about sending them back to school. However, she knows they require specialized schooling that she cannot provide. Her father is significantly high risk. Prior to the pandemic he could occasionally get a ride from someone else or go to the store on his own, but now Gina doesn’t want him going anywhere. This leaves both her father and sons stuck at home with no outlets for exercise.
The most important policy Gina can think of to help caregivers like her is twofold; both have to do with financials. First, she believes workplaces need policies in place that prevent them from penalizing and even firing caregivers who need time off to provide care for their loved ones. Second, she believes there should be compensation to caregivers who are not able to work a traditional job while caregiving. Family caregivers are performing a job no one else would be doing otherwise, and they should not be struggling to live off Social Security or applying for benefits they never receive. Being a caregiver is stressful and exhausting, and there should not be the added worry of feeding a family and paying bills.