When I first started hospice, I ended most of my visits feeling sad. It seemed like most of my patients were unhappy and felt trapped. They complained about how they had nothing to do, wished to go outside, or wanted better food. Frequently, the patients couldn’t even hear me, so any attempts to comfort them with words of positivity were frustrating for both of us. This only intensified my feelings of hopelessness and sadness.
Death and dying seemed like a prison, like being trapped in a body that you have no control over. It was shocking to see how much personal agency you lose as a hospice patient. You have so little control over the food you eat, what time you want to do things, when you want company or personal space. Often times, I felt like I was intruding on my patients’ personal spaces, since I would just drop in during the week, sometimes when the patient was sleeping, and try to have a conversation. I always made sure to ask if they wanted company to give them a small sense of control and agency. I was rarely, if ever, declined, and they were almost always grateful to have company.
With more visitations, I started to realize that dying was not so sad. My patients talked about many fond memories and passions. One patient talked about the students she used to teach, and another discussed how much she loved good cognac. It was nice to see that even though these patients couldn’t participate in many activities, they could still find joy in old memories.
Once when I was visiting a patient, she was clearly a little out of it and kept asking me to help myself to the shrimp from the fridge. At first I was confused. There was no fridge in the room and definitely no shrimp, but she kept asking me to help myself to the shrimp. Eventually, I told her I ate some of the shrimp and it was delicious. At first, I felt a little bit guilty about feeding into her delusions, but then I realized that my going along with it made her happy. We talked more about food and cooking. Together, we started planning an Easter dinner, setting the table, cooking the lamb, and inviting the guests. I never moved from my chair and she never moved form her bed, but still, we planned and ate a whole Easter dinner in 30 minutes of conversation. My patient was happy to hear about how much everyone enjoyed the dinner.
Moments like these felt strange, but they also brought a sense of hope, happiness, and lightness to my visits. They made me realize that even when your body might fail you physically and mentally, you can still create a positive and happy space with shared words, memories, and company.