“Imagine the number of family caregivers who only go to the doctor for emergencies. Many families of color have a poorer understanding of health issues and treatment options and, unfortunately, their loved ones die earlier than others.”
Black coffee and Levi Garrett tobacco is how my grandfather starts his morning. He doesn’t move as quickly as he used to, but he moves fast enough even though he is tethered to an oxygen machine. I bend down to help him put on his socks, and he tells he can do it—his measured independence is intact. He is 98 years old and refuses to live anywhere but in the home that he built. Our family accommodates his wishes no matter how challenging it may be.
Born in Mississippi, my grandfather was raised by his paternal grandmother. A World War II veteran in the U.S. Army with only a high school education, he was an everyman in his professional career, from ranch hand to railroad engineer to the head custodian in the University of Arizona’s College of Education. He cleaned the building where I would later conduct my PhD research in medical school diversity and family and community medicine.
He’s saved some money, has a Medicare supplement insurance plan, and his funeral plans are in place. He says he wants it to be simple. He also has his family and his expectation of us, which are guaranteed by our promises. We will do for him as he has done for us.
He is my grandfather, “Campa,” and this is our culture of caring.
When Campa was recently in the emergency room for dehydration, my family exceeded the number of people allowed in an emergency waiting room. No, we are not rule-benders, but we want Campa and the healthcare providers to know that we are there to support him. We provide anecdotal patient information about his daily life that may help with a diagnosis. We take the time to know the healthcare team—from the person bringing him coffee to the person administering a blood pressure screening. Sure, we may hover over him, but it is our duty.
Campa has more than many elders of color.
Independent research shows that 91 percent of African American and Hispanic seniors are financially vulnerable, meaning they lack the resources for basic healthcare. Current federal standards for measuring the federal poverty line fail to consider the many expenses that adversely affect elders of color. The wealth gap between people of color and the white population has worsened in recent decades.
Many seniors of color have less access to employee retirement plans for a variety of reasons. And, sadly, many seniors of color must drain their often meager savings to even qualify for sometimes life-saving assistance.
Thankfully, Campa has health coverage from his former jobs plus Medicare to keep him healthy. More important, he possesses what many elderly people do not have—a supportive family network.
Families like ours realize that this type of care requires patience, heavy-lifting (literally) and resources to keep our family members comfortable and happy. Fortunately, we have been able to effectively navigate complex health and social service systems, manage large amounts of information and make difficult decisions. How do we do this? We are very hands-on and tightly knit. We connected to our community agencies through board service or using our network of personal and professional colleagues. And we freely share our experiences to help others.
Though many seniors of color have emotional support from their families, fewer families are able to navigate the organizational support.
Campa has a range of health issues, from low-functioning kidneys to congestive heart disease, a broken back years ago, a herniated disc from when a drunk driver collided with him after a fishing trip and his dependence on an oxygen tank. Thankfully, my mother, sister and I are knowledgeable about screening and preventive services. We schedule regular doctor appointments and adhere to medical regimens.
Imagine the number of family caregivers who only go to the doctor for emergencies. Due to lack of information, they often seek treatment late in the development of a potential disease. Many family caregivers have a poorer understanding of health issues and treatment options and, unfortunately, their loved ones die earlier than others because their families simply lack knowledge about healthcare networks and how they function.
While our training with Campa’s care is informal, it is our hope that healthcare professionals understand that families like ours are doing their best within this chronically stressful process. For families of color without the necessary resources, caregiving can lead to physical, psychological and psychosocial problems. Because of these types of disparities in cultural caregiving, providers must openly communicate with patients and their families; sometimes healthcare is a family decision. And it’s not only in direct patient care where cultural sensitivities need to develop, but also at the front desk, in medical billing and among other medical staff.
Let’s create support groups, classes, social networks and other opportunities to understand and support the roles of cultural caregivers. Imagine if doctors reached out to community cultural leaders to better understand cultural practices and value systems, and overcome healthcare barriers. Physicians and community partners could co-sponsor health fairs that offer resources and foster good relations between patients, families and healthcare providers. Reaching out to particular segments of a community to offer preventative medical talks would benefit both the community and the practice.
Tanisha Price-Johnson, PhD is executive director of admissions at the University of Arizona College of Medicine and a research assistant professor in the Department of Family and Community Medicine. Tanisha developed this essay as a Public Voices Fellow with The OpEd Project.