Experiences in Hospice, Thoughts on Aging

Oil Pastel, stylized rendition in blue, red, pink, and yellow depicting a person visiting an older woman in a hospice unit. The artwork appears colorful, hopfful, imaginative, and childlike

“The walls were sterile,” she wrote. She spoke of sterile walls and thick air and a palpable heaviness. I read Autobiography of A Face last summer and didn’t fully understand what Lucy Grealy meant by the “hospital aura,”: its absence of presence. At the rehab center though, that is what I immediately notice first. The walls are, indeed, remarkably sterile.

Hospice care is about death, but the rehab center is very much alive. The first time I enter I am not greeted by the looming quiet Grealy poetically describes. Alarms are going off loudly in intervals of 10 minutes, interrupted by brief respite and then nurses and patients arguing. My patient, Martha, sleeps through it soundly. She doesn’t care. Martha doesn’t seem to care about most things.

The first person I talk to is not Martha, but her roommate Mary. She glares at me and asks me why I’m in her space. I don’t know how to react, and I tell her that. Strangely enough, my awkwardness comforts her. She says she’s used to nurses and strangers always doing things— touching her, moving objects—without bothering to tell her why. She doesn’t want to be helped, she tells me. She simply wants people to let her read in quiet. I am reminded of the advice John Green gives in The Anthropocene Reviewed about hospice care: “don’t just do something. Stand there.”

And speaking of the roommate, Martha and Mary hate each other. At one point, Martha looks at me and smiles. “If I was 30 years younger I would’ve loved a get well soon stuffed animal. Could’ve thrown it right at her. Now I say, whatever! Life’s too short to care.” Her memory is fading, but the simple things remain crystal clear. She speaks enthusiastically of her favorite memories: being in ordinary places with extraordinary people. She has a gratitude and a bold carelessness the world (and I) could use more of.

I’m surprised that she talks to me, a stranger, with absolutely zero filter. I’m surprised that she makes jokes about death and terminal illness and her divorce. And I’m most surprised by her banter with Mary. Something about eighty year old women spending their last hours having beef with one another reminds me of how laughably similar and human we all are. When I ask her about moving to Providence from a small town Martha remarks, “Everyone on the East coast thinks they’re all that, but their egos are nothing to me. What makes them different, money? People are just people.” Martha’s right. In service, we often emphasize nobility while negating the fact that who you are helping is at the end of the day, just a person. People will always just be people: joys, sorrows, and beef included.

Martha and Mary may dislike one another, but they unite in their disdain for the nurse. The nurse is blunt, direct, and detached. Is this what will become of me when I’m older? Will my only visitor be someone who views spending time with me as a job to get over with? American culture often emphasizes working towards a brighter future. Yet when it comes to aging–the one future we all share–we seem to care a lot less than we should. 

Across the hall, another woman, Debbie, cusses the nurse out and tells her she’s going home. The nurse tells Debbie she has memory issues and needs to watch her language.

Care is a complex thing. I get Debbie’s point of view. The nurse is cold and unfeeling and the walls do indeed make for a very sterile place to spend your last days. But I get the nurse too. The nurse is trying; I can see it in her sweat stained cap and flyaways. I wonder how many hours the nurse has worked. I wonder how many people the nurse gets close to, only to watch them pass away. I don’t know if the nurse could survive her job without some degree of desensitization and emotional detachment. It’s a noble thing …to spend a whole career caring for people while receiving very little care in return.

The older I get, the more I’ve started to think about aging, disability, and death…not just as theoretical aspects of the human experience, but integral aspects of my experience. How will I practice care in my life and career, while also caring for myself? I don’t have an answer. Maybe I never will. But what I do know is that even if our contributions seem absent, our presence matters, at least marginally. The walls may be sterile but we are not. We are joyful and cynical and carefree. We are complex and wise and unique. And until death, we are alive.

Note: Names have been anonymized and details have been omitted to maintain privacy