Alzheimer's: The Invisible Illness

A while ago I attended Schwartz Rounds at the University of Virginia hospital. This is a program started at Massachusetts General to give hospital caregivers (physicians, nurses, chaplains, and the like) a chance to talk about the emotions of caring for critically ill patients. I begged admission out of curiosity. At hospitals, distressed people come and go in a revolving door mode. What is it like, I wondered, to care briefly, intensely, and intimately for an unending stream of patients, the majority of whom have two things in common: significant pain of some kind and a thin gown that ties in the back?

I thought of sitting alone at a nearby coffee shop once, shamelessly eavesdropping on the conversation taking place at an adjacent table. A medical student, who looked, admittedly, not much older than twelve, was laughing about how she’d like to implant rabbit ears on the heads of children undergoing surgery for cleft pallet repair. I was sickened. 

But that hospital theater, with every chair taken and people standing in rows against the back wall, I heard something very different: A panel of five struggled with sadness, brought close to the surface by the vivid and disturbing memories of caring many years ago for a teenage girl with septic shock. Over a period of weeks, the girl, fictitiously named “Stacey”, lost her legs, hands, teeth, and eventually her life. A nurse described dressing her gangrenous wounds; the chaplain remembered holding her decomposing fingers; a surgeon talked about the difficulty of treating her, knowing how grim even the best outcome could be. It was heavy and sad, and a box of tissues was passed back and forth. No macabre humor in that room.

Everyone left, I imagine, with a sense of how frail and vulnerable our bodies are. I couldn't help but compare Stacey’s losses to those of AD. Nurses and surgeons who see the worst of the worst were rattled by her case. Helplessly watching a young person’s limbs rot away was unthinkable. The visual images their clinical descriptions created in my own mind made me feel slightly faint.

"I Feel Invisible When It Comes to You" by Ray, via Flickr, Creative Commons

"I Feel Invisible When It Comes to You" by Ray, via Flickr, Creative Commons

The ravages take place slowly and neatly with Alzheimer’s, behind the attractive facade of an unblemished face and combed hair. Women with Alzheimer’s wear lipstick sometimes; men may wear starched dress shirts. MRI and CT images of the brain are abstract. It’s easier to normalize—to impose our expectations on a dementia patient. Dementia patients look and sometimes act as if nothing is wrong. I’ll try to remember that unnamed girl when I’m with a person whose brain is undergoing devastating changes and have, I hope, the deepened compassion of one who can see—graphically—the effects of incurable illness. Alzheimer’s disease is terrible, too, and in not such a different way.

Note: first published in an earlier All-Weather Friend website