For the past six months, I have been visiting Helen. I’ve gotten to know a few things about her life, but the woman herself has changed drastically in the time I have known her. Helen has late-stage dementia and doesn’t remember most of the things I know about her. For our first few visits, we talked about her family, especially her mother. Her mother was a very religious woman who cared a lot about education. Helen told me these things a couple hundred times, taking a pause each time to consider how best to describe her mother. In these visits, I had a good idea of how our conversation was going to go that day.
As the weeks passed, Helen’s answers got a little less predictable and more difficult to understand. Helen’s cognitive decline meant that I needed to re-assess what we could do together each time. The first time we met, I had planned to talk to her and was excited to hear about her life story. I quickly realized that this plan was not going to work. I learned a lot about flexibility from meeting with Helen, from hearing the experiences of others, and from talking to other volunteers. It was helpful to remember to let Helen take the lead. When she said “I think my mother will be back soon,” I was reminded of what we had learned about deathbed visions and calmly asked her to tell me more about her mother. When she became frustrated trying to find the right word, I took out the box of small items and we held them, sorted them, and figured out how they could fit together. It felt freeing and fun for both of us to play with little plastic toys without feelings of judgement or pity.
Toward the end of my time with Helen, she was moved to a smaller room and stopped leaving to go to the group room. Now, the plastic toys were too tiring and words beyond her usual “hello dear one” were harder to find. We opened the blinds and looked out at the trees and parking lot. As Helen’s mind changed, I practiced thinking creatively and took inspiration from her. I learned that going in with a plan doesn’t always work and was reminded that I was there to serve my patient, not to gain valuable insight from her or study her as a model of late stage dementia. I believe these lessons will be valuable as I continue to pursue a career in medicine because patients may not always do what I expect them to do.
So much of medicine is centered around following strict protocols. These are in place for patient safety, and while they do prevent big mistakes and should ensure that patients receive the treatment they deserve, they’re very impersonal. Every patient’s situation is complicated by their families, living situation, insurance, other medical conditions, religious and cultural duties, and so much more. The job of a good physician is to work with the patient to understand all of the complicating factors and develop a thoughtful plan, knowing that things may continue to change with the patient.
As I stumbled through trial and error of figuring out what to do, Helen remained content. She never seemed phased by the annoyances or fears of the things and people around her. She greeted the nurses, patients, and me with a smile and many thanks. I know not all patients share her sunny disposition, but I have hope knowing that Helen found peace at the end of her life. I hope to use what I have learned from this experience to better serve people in difficult situations so that they can find their peace like Helen did.