Abstract
In writing Stages, Rachel Kauder Nalebuff has created an alchemy. Toggling between the settings of end of life and older age and the uncertainty and openness of one’s 20s, this work shrinks the time and spaces between us. With a critical eye, Rachel Nalebuff extrapolates the wisdom and lived experiences of the staff of a nursing home to her own life, lending questions and curiosity for the reader to explore as well. It reads like a humble invitation: to see what is often unseen, explore what might cause discomfort and awe, acknowledge what is and what may be, and not to shrink for it but to turn our faces toward it. The interviews amplify the voices of those giving care, accompanying, and bearing witness to the lives and deaths of residents of a nursing home. Through these interviews, and the process of performing a play, the staff use the space created to share their unique values and perspective not only on living and dying, but on love and the fullness and hollowness of our humanity. Staff artfully describe listening with intention and preserving choice as an essential component of our shared humanity. They identify the role of rituals and explain the reasons why so many of them live an integrated life, where their work and their worldviews inform each other in a way that affirms why they spend their workdays in a nursing home.
Pondering who is giving care and speculating about the accompanying emotions, how it might be fulfilling and draining, chronic and fleeting, the author reflects: “Now when I go out walking, I wonder how many seniors are inside the apartments around me. And how many people are also there, invisibly cleaning, wiping, carrying, listening, and tired of listening.” I was reminded of the feeling looking out the window on the 15th floor of our apartment in Manhattan, rocking a restless newborn. We lived across the street from a skilled nursing facility and our windows faced each other. In all hours of the night and early dawn, I would see people moving around the rooms, giving care, or sometimes staring out the window. I wondered about them and could never decide if I felt more connected knowing they were there, or more alone. We were giving care at the bookends of life. I always regretted having never waved, but as a new mom, arms full with a baby, I couldn’t quite figure it out. Here, in her musing as she walks down the street, Rachel Nalebuff is doing more than shedding light on what is often invisible or undesirable for us to examine socially—she is centering and honoring it.
In the discipline of palliative care and hospice, where diverse teams of professionals care for people who are living with serious illness and often near the end of life, there is growing thoughtfulness about an expanding sense of team. Traditional medical hierarchies of power are often still privileged when caring for people who are seriously ill and dying. Yet the food service employees, the custodial staff, and the patient care providers are of immeasurable value to patients and families. The freshly laundered sheet on a bed where someone lies dying has value and meaning, and the person who made that bed has a voice and perspective we benefit from hearing. Similarly, the custodial staff, caring for rooms and space several times a day become familiar and trusted faces, often perceptive to shifts or transitions before other staff or family. Stages provides an opportunity to sit with, expand upon, and learn about different ways care is given and received at the end of life. In addition, by creating art with the staff, and sharing this human process of rehearsing and performing a play, the author models how we can hold space and center those who are not afraid to be with and care for those at the end of their lives.
