How neuropathy caregivers become a proxy for emotional suffering
As their bond with their patient grows, so does their heightened empathy
For neuropathy patients, especially those who have familial amyloid polyneuropathy (FAP), the caregiver may become their arms, legs, eyes, and ears. While that may seem like a daunting task, there’s a benefit: Caregivers experience an emotional side to their daily duties that seems to make them one with patients.
I recently attended an oncology conference that featured Dr. Glaucomflecken, a comic and real-life doctor, as keynote speaker. If you’re unfamiliar with his work, his often sarcastic subject matter features many medical scenarios that patients and caregivers might experience. Dr. Glaucomflecken (whose real name is Will Flanary) spoke in a more serious and drier tone than he usually uses in his videos.
This more subdued presentation was because he was telling his life story, which involves cancer (twice) and a heart attack, as well as other medical emergencies. During them, his wife was often forced to step up as a caregiver, even as she raised their children.
As a central point to his talk, Dr. Glaucomflecken referred to caregivers as patients by proxy, by which he meant that the caregiver experiences the same pain as the patient, but on an emotional level. Caregivers, he said, are called by default to suffer alongside the patient. And with this connection, they’re also called to a life of service as they spend time with their patient, who’s often a loved one.
Providing emotional support
My mother-in-law has FAP. Her polyneuropathy symptoms include both numbness and a burning sensation in her feet, as well as a heightened sensitivity to touch in her hands and lower extremities. This neuropathy pain drastically limits her mobility, to the point that she needs an electric wheelchair for travel. Traveling outside of the house involves a great deal of physical exertion to load her wheelchair into our family’s wheelchair-accessible van.
As her caregivers and family, we experience her moments of pain and self-doubt, but also her happiness. I wasn’t there for the diagnosis, but I’m told that afterward, the family banded together and shared the workload of emotional and physical support.
My father-in-law handles the brunt of the emotional support. Besides my mother-in-law, of course, he was the most affected by her diagnosis, so he juggled her emotional highs and lows. As the patient by proxy, he feels with her as he provides my mother-in-law’s physical care, growing familiar with her symptoms as well as all of the treatments she requires.
The emotional aspect of caregiving may be most important, as it helps patients and their caregivers develop a deeper bond, both learning what’s required to make sure the patient is comfortable. After all, many caregivers are family members, as we are. This proxy concept covers how we’ve become more aware of my mother-in-law’s physical and emotional needs.
Note: FAP News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of FAP News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to familial amyloid polyneuropathy.
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