The frustrating thing about being a family caregiver is the lack of clarity about the role. Just what is it that a family caregiver is supposed to be doing? When I began as a caregiver, it was just “taking care of Mom.” But in time, after many years of managing surgeries and recoveries, dispensing medications, driving to and from medical appointments, monitoring vital signs, freaking out during emergencies, managing records, seeking resources, and performing other tasks, I began to get a grasp of my duties and responsibilities. I developed a sense of the scope of our health care system and my place in it as a caregiver. Once I had that sense of context, I was able to lump my caregiving duties into three broad categories.
Be The Patient Expert. Medical practice and the health care system are undergoing rapid and constant change. Innovation, technology, and the need to reduce costs are making hospital stays shorter. New medications and therapies are always being introduced. The speed and efficiency of medical production have changed the relationship between providers and patients. Physicians in particular, have less time to spend with patients, to get to know them as people. Today there is more reliance on data—the formal medical record—when making decisions. But the medical record doesn’t capture the patient as a complete human being. The caregiver, who spends more time with their care recipient than anyone, can provide critical knowledge about the patient’s daily life and personality, making a big difference in treatment and outcomes. That’s why we say the medical provider is the expert on diagnosis and treatment. The family caregiver is the expert on the patient.
Coordinate Care. Health care today is complex and layered. There are lots of moving parts—many specialists, many tests, many appointments, all kinds of evaluations and procedures, a huge amount of paperwork, billing, and accounting. Coordinating and managing all these moving parts is one of the family caregiver’s primary responsibilities. And that doesn’t even include domestic duties such as assisting with basic activities of daily life, navigating family relationships, providing encouragement, uplift, and cheer. Medical providers are trained to focus on the patient. But the family caregiver is often the real hub at the center of patient focused activities. That’s the reality behind our notion that the family caregiver is the hidden decision maker controlling most aspects of the patient’s health care experience.
Be The Patient Advocate. Because modern health care is fast, complicated, and constantly changing, there are many opportunities for lapses, oversights, errors, and misunderstandings. There are lots of cracks to fall through. Perhaps more than anything else, patient advocacy is the family caregiver’s main duty. This is what separates family caregiving from professional practice. The love that binds a family caregiver to the care recipient is different from any other relationship in the health care system. That love, combined with an adequate knowledge of the health care system, confidence, and a calm manner, can make a huge difference in the quality of care and outcomes available to those with whose welfare we are entrusted.