When I saw Mrs. D. last week, it was the first time in years that she had come into the office without her husband in tow. I have many couples in my practice who enjoy having their visits together, and many times they keep each other honest, while helping me get to the root causes of their concerns.
Mr. D. suffers from advanced Parkinson’s disease and requires his wife’s assistance with many routine tasks such as bathing, eating and dressing. She has had good fortune with her own health, and has always impressed me as caring and resilient.
This visit was a stark contrast. After I knocked at the exam room door and entered, I was surprised to see Mrs. D alone. Her usual radiant energy and smile were absent. She looked depleted. She had scheduled a routine visit, but we never addressed her physical health. I spent the entire time listening to her describe the stress she endures caring for her husband. I listened carefully, saying only enough to acknowledge the difficulty of what she was going through. We spoke about support services that might ease her burden, and I encouraged her to allow our office staff to help her connect with caregiver resources. I urged her to let me know soon how things were going.
Later that afternoon, I sat in my office finishing some paperwork and thinking about Mrs. D. Before her solo visit, I never questioned her cheerful demeanor and air of optimism. It never occurred to me that at least some of this was the mask she wore to protect her husband. Before, I had always seen Mrs. D. the superhero. Now I had met her earthly, untransformed self.
As my thinking about Mrs. D. began to align with her reality, I thought of other patients in my practice in similar circumstances. Were there other caregivers whose suffering I was unaware of? Many of my caregiver-care receiver couples are very forthcoming about the shared stress over one partner’s chronic illness. Yet despite the intimacy of doctoring and the emotional safety I try to provide for my patients, I don’t always see past the mask that couples present to conceal their real suffering at home. As my mother-in-law often says, “All that glitters is not gold.”
I realized I could not count on all my masked caregivers to step forward as bravely as Mrs. D had. I was going to have to change my approach.
More than 40 million Americans are in Mrs. D’s situation, according to 2015 data from the AARP and National Caregiver Alliance. That means caregiver burden is a serious and highly prevalent health-care challenge, and supporting those going through it must move up on our national health priority list. Caregivers may not know about support services, or how to access them. At the same time, they may ignore their own health-care needs, placing their well-being and ability to provide care at risk.
But we cannot connect caregivers with educational, psychological and practical support unless their needs are known. Mrs. D. made me aware of the lengths people may go to hide them.
Moving forward, I am going to make sure that a member of our care team reaches out to all caregivers of my chronically ill patients. The purpose will be twofold: to assess their need for caregiver support, and to encourage them to schedule health maintenance visits for themselves. Superheroes take heed: Your powers will diminish over time if the vulnerable mortal being beneath the mask goes uncared for. Creating a safe space for my valiant caregivers to look after their own very human selves is just as essential as everything else we do for our chronically ill patients.
Jeffrey Millstein is a primary-care physician and patient experience champion for Clinical Care Associates of Penn Medicine. He is speaking at The Inquirer’s Telling Your Health Story conference on September 28. For tickets, visit inquirer.com/healthstory.