One Saturday afternoon, I was sitting with a group of patients in the cafeteria. Suddenly, the oldest patient, a 90-year-old woman with poor sight, fumbles for my hand, raises it high, and tells me to shout after her, “Hallelujah!” I awkwardly follow but she squeals in delight, “I did that!” Still ecstatic, she points to the wall and tells her friend join in. I look over in that direction and realize that there is no one there.
It was only my second-time volunteering at the hospice, and I didn’t know what to do. Do I tell her she is pointing at the wall? Do I go along with it and act as if her friend is there? Before I could respond, another patient leans over and whispers, “Her friend passed years ago. But this is the happiest she’s been all month.”
As a neuroscience major, I constantly run into the topic of dementia and Alzheimer’s in my classes. I’ve always been familiar with textbook examples of memory and cognitive dysfunctions that characterize the illness. However, before volunteering at the hospice, I had never actually met an individual who had dementia, and as such, never realized to what extent patients were affected by it.
During every visit to the hospice, I notice the photographs that adorn the rooms. When I see them, I can’t help but remind myself that these photographs capture the emotions, connections, and experiences of the patient. Yet, it’s the most discouraging to see that some patients, due to their old age, can’t even recognize the photographs nor the individuals in it anymore. Their memory is distorted and slowly, they forget the very moments that have shaped who they are.
When I first started volunteering, it was saddening to see how neurological diseases took away the agency of a patient by debilitating their memory. Yet, that day at the hospice, I saw the role that I, as a volunteer, could play in re-enabling these individuals even in the face of declining health. My simple gesture of shouting “Hallelujah” let that patient know that although she may be in the hospice, it didn’t mean that she wasn’t still able to direct her environment and still interact with others. When she happily exclaimed that she was the one that had made the group shout Hallelujah with her, I saw that she had found assurance in still being able to communicate and direct others. Within that five-minute interaction, I felt privileged to have played a role in providing that sense of confidence and happiness through such a minimal gesture.
As a student pursuing a medical career, I know that a tenet of being a clinician is to provide the best care possible. However, my experience at the hospice has affirmed for me that the best patient care isn’t simply dependent on the clinician’s ability to diagnose and treat disease. I learned that when working with individuals who are afflicted by disease, those seemingly minimal physical and verbal gestures are just as integral in letting them know that they are still in control of their health and ultimately, their lives.