Rebecca Whitney, associate director of Programs and Community Support at SRNA and mother of child with a rare neuroimmune disorder, provided thoughts on the importance of caregivers and the role they play in everyday life.
For all the brightest, breathtaking moments of joy and laughter, they are there. For the darkest times, in the middle of angst, uncertainty, and strain, they are there. For the 3 AM sudden wakeups requiring a trip to the emergency room, through piercing screams or silent tears, or the clinic appointments inconveniently scheduled in the middle of a workday, regardless of the time or place, they are there. The label of ‘caregiver’ may seem all-encompassing, but the role it describes extends so far beyond what may initially come to mind.
Sometimes they are trusted friends, a hired nurse, grandparents, or even siblings. Often, caregivers are the patient’s spouse, partner, mother, father, or even children. These individuals frequently spend immense amounts of their time ensuring the safety and well-being of their loved one and, consequently, have keen insight into the lives of those that they care for; they will know almost every nuanced detail of their habits—from what time they wake up in the morning and the temperament to expect that day, down to the subtle, nearly unnoticeable signs that indicate the onset of distress or illness. They also know the small but meaningful details of everyday life, like how the person they care for likes their pancakes. This acute attention to detail is crucial and aids in bridging the communication gap that may exist between patient and doctor. The role of caregiver is highly specialized and unique to an individual, just as each patient is unique and highly individual in their symptoms and needs.
Caregivers fulfill a role so significant that no amount of formal training could completely educate an outside person on how to understand the distinctions between two people who have the same condition or diagnosis. We are intimately familiar with the phrase, “There are exceptions to every rule.” Caregivers have learned how to recognize the symptoms that define their loved one’s condition or disorder and use them as tools to educate themselves, formulate questions, and bring them to the attention of healthcare professionals. This assists in understanding a diagnosis, streamlining treatments, rehabilitation strategies, managing symptoms, and helping the one they love, look forward to the future. Their dedication and these skills make them fierce advocates for their person, particularly when the one they’re fighting for is a child or one whose voice may not be loud enough to cut through the noise or isn’t being heard, physically or metaphorically. This is where the caregiver's duty becomes paramount, leading by example and being the foremost and best advocate for their person, second only to the individual themselves. Caregivers are designers and help build the scaffolding of the critical partnership that must exist between provider and patient. Caregivers know exactly how their person’s diagnosis impacts them, their family, and their career. They understand how it may affect them physically, emotionally, and mentally in a manner many skilled physicians cannot pinpoint or even understand.
To dedicate one’s life to specializing in a complicated field such as medicine, let alone one as complex as neurology or neuroimmunology, is no small feat, but so many illnesses and disorders present themselves with a multitude of symptoms that too frequently overlap with so many other possibilities, creating a gray area that could pose lethal issues if not properly defined and treated. The caregiver becomes invaluable when they aid in the physician's education in how their loved one has been affected, what this means for them, and how they have displayed signs and symptoms indicative of something requiring immediate attention. Caregivers are the eyes and ears of the clinician outside of the routine clinic appointment or off the critical care or rehab floor. They can provide timely details that could prove to be an integral part of the diagnosis and treatment but also the doctor-patient rapport, which sets the stage for future interactions and care for the patient and their quality of life. This happens when a parent transitions their child to adult care or the newly diagnosed individual gains confidence in their ability to find their voice and questions as they wrestle with often immense changes accompanying a rare disorder diagnosis. To better understand the patient as an individual versus a list of symptoms or possible complications is to understand better the disorder and how it may reveal itself in people so vastly unique. Caregivers are a conduit in aiding a clinician’s understanding and forming a triad in place of a single straight line in the doctor-patient relationship; they are active, willing supporters, educators, and advocates in the lives of their loved ones, and through these efforts are also shaping the lives of other individuals and families embarking down a similar path.