During this essay, I will refer to my patient by an alias name of “Mark,” in order to protect his privacy.
Throughout my hospice volunteering, I have had the opportunity to regularly spend time with one patient, “Mark”, who is nonverbal. While “Mark” initially took some time to warm up to us, after a few weeks he began to smile when he saw us. We spoke with the nurses and learned that “Mark” really enjoys listening to music, specifically the song “Sweet Caroline.” We make a point to bring “Mark” to the weekly sing-alongs and can see how his face lit up when his favorite song comes on.
Later in the semester, when his family came to visit, we learned that “Mark” has Alzheimer’s disease and that his condition has deteriorated rapidly over the past year, leaving him unable to speak or communicate. Meeting his brother and learning more about “Mark’s” life really underscored the tragedy of Alzheimer’s: it can transform the life of anyone, no matter how healthy you were previously. We learned that “Mark” used to be a college basketball player and took his team to states. Meeting his brother also emphasized the impact that we have on “Mark’s” life. “Mark’s” brother lives in Singapore and cannot visit as much as he would like to. It brought him tremendous comfort knowing that we were sitting with “Mark” every week and keeping him company.
One of the most striking moments from our visits was one day when his daughter visited him; when he saw her, he began to cry silently. She explained to us that the disease can feel like returning to early childhood, when you have thoughts and feelings but lack the words to express them. That moment stuck with me, as I tried to think of how frustrating it must be to never be able to communicate how you are feeling, especially when you used to be such a dynamic, active person. Until that moment, it had been easy to assume that he was not fully present with us, as he could not speak and rarely made eye contact beyond our initial greeting. But seeing his reaction to his daughter reminded me that even when verbal communication disappears, awareness and emotion can remain.
“Mark” is beloved in the hospice community. It was apparent how incredible of a person he is and was by how many people walk up to him every time we visit and say hello. We were told that “Mark” is the “best of the best” and a phenomenal person. It makes me sad that I never had the opportunity to know “Mark” before Alzheimer’s completely transformed his life. I wish that we could have had the opportunity to have a conversation.
One of the common criticisms that I have heard from physicians is that they do not have enough time with each patient. Spending 2-3 hours each week sitting with “Mark” made me realize how much the medical system is taking away from the physician-patient experience. The connection that you can make with a patient by simply listening to their story establishes trust and is essential in being a compassionate physician that provides the highest standard of care. In my career in medicine, I will take the extra step to get to know my patients, even if I only have 5 minutes to do so.