INVISIBLE | Joanne Wilkinson
I am approaching the bedside of a sixty-two-year-old woman with Alzheimer’s dementia, whose disease has become so advanced that in recent weeks, she cannot speak or make any of her needs known and has been conveyed finally to a nursing home so her family, exhausted from months of heroic care, can get a break. At the nursing home she promptly developed bedsores and sepsis, went from there to the ICU and has now come out to my team on the med-surg floor, where we are planning a family meeting to discuss Hospice.
The woman in the bed is ten years older than I am. When I was in grade school, she was in high school. When I was in high school, she was newly finished with college. I had cassette tapes and she had eight-tracks. She probably listened to Carole King, and Bread. She’s not that much older than I am and certainly doesn’t seem old enough to be here, in this bed, for no reason other than bad luck, about to be transferred to Hospice to die.
She is very small, frail even, with a deeply-lined face and a scraggle of gray hair. Would I look this way with no hair salon and no makeup? Instead of a ‘sitter,’ as we call the CNAs that do overtime shifts alongside the patients who present a safety risk, she has an AvaSys, which is the remote electronic version of the sitter, a benign robot elegantly posed in the corner overlooking her bed. Somewhere, on some screen, people can watch me interact with her as I steal up to the side of her bed.
She is wearing huge mitts, like boxing gloves, the adult version of those little mittens babies wear so they won’t scratch their eyes with their fingernails. Her hospital bed is a tangle of sterile-looking white sheets and one of those white hospital waffle-knit blankets. Down by her feet, there is an unexpected addition: a large stuffed bunny, white, with long loping ears trailing over the edge of the bed, tipped over slightly and leaning toward the window.
I don’t think she can really hear me, or really appreciate who I am and what this is about. I don’t make a big effort to explain things to her or tell her I’m the doctor in charge. Better that I remain mostly invisible. “Hi,” I say softly. “I’m one of the doctors, just here to listen to your heart.” I pull out my stethoscope. “Look at your sweet bunny,” I add. “I’m going to move him up here so you can be a little bit closer, okay? I think he’s lonely.” I tuck the bunny next to her forearm, so that the part of her skin that’s uncovered can feel his soft furry belly. “You rest, okay?” This is what I always say to patients who are very ill or dying – you rest, to the intubated ICU patient who I don’t think can hear me; you rest, to the confused and agitated elderly patient who is at the end of their life. I hope that in some small corner of their brain, it reminds them of a time when they were ill as a child, and their mom tucked them up on the couch with a tray and some grape Tylenol and a TV dinner. You rest, she might have said to them as she laid a cool hand on their forehead, and then I hope they slid into a nap knowing that when they woke, they would be feeling better.
I sneak away from the bed after only being with her for maybe ninety seconds, but there is nothing really for me to do here – nothing I appreciate or notice about her physical exam is going to change the fact that she can’t swallow, is malnourished and only intermittently conscious. As I am approaching the Purell station to sanitize my hands, I look back for a moment and see, to my surprise, that she has turned her head, slowly, to regard the bunny, now sitting straight up next to her shoulder so he can make eye contact.
In the hallway, two more patients to see, my step falters for a moment as I wonder where all the acts of kindness go – the soup, the nurses helping people lie down more comfortably, the extra blankets, the straw to drink water when lying down. Sure, some patients get better and clasp our hands as they are wheeling out, fully dressed in street clothes, to the door. Some send a cookie tray after they recover. But some, like this patient, merely die, and we are left not knowing whether any of it made a difference, really, which kind of makes me wonder what I have been doing with my whole life. I thought, when I became a doctor, that one day I would know the answers, but more and more I feel I am just making motions on the sidelines of other people’s tragedies, and maybe not affecting them in any meaningful way.
I rub my Purell-ed hands together more and more rapidly, willing myself not to look back at the bunny, and my stride starts to speed up so I can finish rounds on time.
Joanne Wilkinson is an Associate Professor of Family Medicine at Brown University, a voracious reader and a single parent who writes whenever she gets the chance.