BY GREG BROZEIT NOVEMBER IS CAREGIVER APPRECIATION MONTH Caregiver is a rare English word with a loaded and complex meaning. At its core, it means accepting close personal responsibility assisting another with essential tasks of living. Being a patient caregiver includes assistance with getting to doctors and hospitals, helping to understand and comply with medical instructions, and just plain being there when someone needs you. Often a caregiver is a spouse or family member, but it can also be a friend. Defining what a caregiver is isn’t simple. To compare, German—my native language—has many words that are not easily translated into English. My favorite word is Schadenfreude which means “taking pleasure in the misfortune of others.” It’s another way of saying “enjoying it when bad things happen to bad people.” You know what I mean. In German, there is no translatable with the equivalent meaning of caregiver. Indeed, when I worked in Europe, I routinely asked people who spoke other languages (French, Spanish, Italian, Flemish, Czech, Danish, Norwegian, Swedish, Finnish, Polish or Hungarian) if they had a translatable counterpart. When pressed, usually it was something closer to “dependent” or “kin” (the German word is angehörige[r]). A difference also exists between American English and British English, which uses the term “carer.” When I tried to explain the concept of caregiver as I understood it in the U.S., I was usually met with a variation of: “Well, that would be the government (or the state).” In other words, guaranteed state insurance, considered a basic right of citizenship, fills in number of gaps related to patient care not covered by American public or private insurance. And that, as I see it, is the crux of the difference between perceptions of what caregivers are. While most duties of a caregiver are difficult—regardless of where one lives—American caregivers have to maneuver through many more hurdles and work through a wide spectrum of issues. The burdens of supporting individual patient experiences are squarely on their shoulders. These include finances, dealing with insurers, helping patients sort out treatment decisions, communicating with medical professionals, labs and nurses. They become ambassadors to the world at large of the loved ones for whom they care. Also, in the United States, it is not at all uncommon for patients to have more than one caregiver. Small communities of support develop; friends and family who do tasks like mow the yard, shop for groceries, take the dog for a walk, or cook meals all become caregivers. I think this expansive idea of caregiver is characteristically American. And it requires a stronger support system than we, as citizens, as neighbors, as members of churches, or even members of the medical community will acknowledge. I know in my experience that many support groups have long recognized this and actively organize care for caregivers, so to speak. In late 90s and early 2000s, myeloma support groups in North Texas and Philadelphia pioneered the creation of programs, meetings and outreach activities to help caregivers. What is generally missing, however, is caregiver support provided by insurers and government agencies. Patient support policies in many parts of Western Europe often take caregiver issues into consideration. The most extreme difference I experienced was at a caregiver session I helped organize for a patient meeting in Norway. Caregiver sessions are a staple of the IMF’s American Patient & Family Seminars and often became cathartic outlets for people to anonymously vent their frustrations—which were often related to finances, access, and support issues. Thinking this would be an innovative addition to a Norwegian meeting, I was surprised by the caregivers’ satisfaction with their insurance, social services, and medical providers. We actually had to cut the session short because there was little to discuss. Policies, such as paid family and medical leave, are also quite different in the United States as compared to Western Europe. Many European nations allow people to take time from work and provided employment security to devote time to being a caregiver—even extended vacation periods. It also includes having insurers pay for non-medical services that enhance patient care. American caregivers would certainly benefit from laws like these. We could also expand the reach of a good American idea. In the 1990s I conducted a five state study on the provision of Medicaid home care services for elderly persons and persons with disabilities. Some states, like Texas, mandated strict control and agencies assigned licensed or approved workers to assist their clients with activities of daily living. In other states, including Michigan and Oregon, clients could choose their caregivers—they could be neighbors, friends or family members—and they would be paid minimal fees for the services they provided. With our aging baby boom population, these services are becoming more widespread. Why not consider expanding them to include patient caregivers, especially among lower income patients? Why not expand paid family and medical leave laws? While free-market supporters might dismiss these as too costly or not part of government’s responsibilities, countries that provide these benefits see them as investments in their workforces that actually boost morale and economic productivity. There is no question that we must find new ways to value and support caregivers more. That should be self-evident to anyone who has been or needed a caregiver.
about the author
Greg Brozeit has been with the HealthTree Foundation since 2015 when he began volunteering for the Myeloma Crowd. Prior to that he worked with Dr. Bart Barlogie and the International Myeloma Foundation, inaugurating many myeloma patient advocacy and education programs.