Throughout my experience working with Seasons Hospice, my beliefs and expectations about end-of-life care have been profoundly challenged. I found myself surprised by the relative magnitude in which thoughts about my last few months on Earth scared me when compared to my thoughts on death.
An issue that is brought up frequently, but is very seldom actually experienced, is the condition of people in nursing homes. All my patients this year have been in poor physical condition, yet I cannot help but wonder, of those in the nursing homes who are only slightly ill, how much could they be improved with a change of scenery or stimulation? Going into the field of medicine, I consider myself first and foremost a caretaker. I wish for these patients to have positive experiences as they conclude their time on earth. Instead, it horrifies me to see human beings stuck in a monotonous culmination of smells, linoleum, and the color beige. This, more than death, is what I fear for myself. I am deeply troubled by the fact that the conditions we have created for the sick and elderly are poor enough to be considered by many a fate worse than death.
Another important aspect of this experience that has challenged my belief of what it means to be a caregiver is how uncomfortable it is to be both vulnerable and indivisibly available. It is truly intimidating and scary to walk into a patient’s room for the first time, unsure of what needs and capabilities lie on the other side of that door, and unsure if you have the tools to fix them. I had to decide for myself that what was going to separate me from others who are not caregivers is having the determination to walk in that door, armed only with uncertainty, and having the resilience to come back when things don’t go as well as you would have hoped. It is actually quite a rare experience for a caregiver to spend an extended period of time alone with a patient solely for the sake of being there. This is not something I have ever experienced from a non-relative. This is not something we are conditioned to expect or be comfortable with. We are not comfortable with silence or uncertainty. We do not typically set forth on tasks that we cannot clearly check off as complete. Working in hospice requires defining and executing this unique and strange experience in a way that makes sense to you. It is a practice in human dignity: going to visit someone with whom you may not be able to communicate, simply because that person is a human being and had intrinsic worth and value.
Sickness and caregiving is uncomfortable and strange at times. It requires fighting the natural instinct to put one’s needs before others’ and to strive for efficiency. This experience taught me to slow down, and forced me to be comfortable in being vulnerable and still. I am grateful for this experience in teaching me how to do these things.