Micah was a long, thin stork of a boy, a 19-year-old, neurologically devastated man-child, lovingly cared for by his grandparents for many years. His mother had been young, shiftless, irresponsible, into drugs, and had never really been around much. He’d had a hemispherectomy for intractable seizures as a little boy and had only been minimally responsive since then. Micah had rarely been hospitalized but was now my patient due to aspiration pneumonia.
The story is sadly common. I have taken care of many children like Micah. I reviewed his chart and was ready to listen to his chest, check the pulse oximeter, assess his stability, and talk with his grandmother.
I walked into the room to meet Micah and his grandmother. The room was darkened, and my patient was asleep. I jumped with a shock of recognition, as my own mother stood up and said, “Hello, Doctor.” There she was—my mom, who had been dead for 10 years. She was standing right in front of me, with her sweet southern accent, in her matching Alfred Dunner blouse and slacks and sensible shoes, holding onto her red rolling walker. Her brown hair was softly curled as always, with a wing of white along one temple. I couldn’t speak. I couldn’t breathe. I stared.
She walked toward me, pushing her walker, and as she came into the light, I saw that she was not my mom. Of course. My heart slowed down. But I had never seen anyone (even my aunts) resemble my mother more. I somehow stammered through that first visit, examined Micah, reviewed the most recent radiograph and today’s care plan with the grandmother, and fled the room.
My mother had been a nurse. When I was little, she worked for our pediatrician, and I walked to the office from school, spending the afternoons drawing on crinkly table paper in an empty examination room, doing my homework at the receptionist’s desk, and learning how to shake down the mysterious glass thermometers. Later, my mom was head nurse in the local emergency department. She was formidable looking in her starched white uniform, lace-up clinic shoes, and white nurse’s cap with the black velvet ribbon. Back in those days, there were no emergency department doctors; the nurse triaged and then called the doctor on staff she thought should see the patient. My mom was no-nonsense; nothing that came through the door scared her, and we all said she could diagnose at 40 paces. Whenever she worked weekends, I was allowed to come watch. I quickly learned how to stay out of the way during trauma chaos, how to avoid a sterile field, and which doctors would answer my questions. I knew most of them; it was a small town, and some of them were my Sunday school teachers and babysitting customers. At home, dinner table conversation was likely to be, “Oh, a man came into the ER today, gored by a bull! Guess what we did while we were waiting for the surgeon?” When I went off to medical school, my mom gave me 2 pieces of advice. “A smart doctor listens to the nurses,” she said. “A good nurse is a doctor’s right arm.” That advice has stood me in good stead over the last 25 years of practice.
I was sitting at the nurses’ station and came back from my reverie. Regardless of the eerie resemblance Micah’s grandmother had to my mom, I still had a job to do and Micah to take care of.
As the days went by, I learned that the grandmother had also had a long career as a nurse, a career with odd parallels to my mom’s. Each day she wore an outfit that looked like something my mom wore. And her combination of sweetness and practicality and her deft way with Micah reminded me so much of my mom. Each day was surreal. Some days, I found it was all so uncomfortable for me that I rushed through the visit, leaving the room almost in tears. Those days, I pondered asking a colleague to take over Micah’s care because I felt so unobjective. Other days, I pulled up a chair and spent a long time in the room, just listening to the grandmother talk, pretending I was with my mom again. If I tried, I could believe it.
The grandmother had been an army nurse in the waning days of World War II, then a Public Health nurse, then stopped working after her daughter was born. Her lips tightened as she reminisced about her daughter. She had been so happy and full of promise, but then so lost to drugs after she realized her baby Micah would never be normal. The grandmother smiled as she recounted her years taking care of Micah. No milestones like other proud grandparents: no first step, no “Mama,” no first day of kindergarten. But she did understand every nuance of him. She could tell when he wanted something. She could read the look in his eyes. She was always there for him. And for her, that was everything.
Micah steadily improved. The grandmother confessed, a bit ashamed, that she and her husband (too frail to be at the hospital much) were struggling to continue to care for Micah. She wondered what their options were. But how could she not care for him? He had been her life for these last 19 years. I was familiar with the concerns of aging grandparents, when they begin to realize they are no longer able to continue the physically demanding job of caring for a child like Micah at home. So, I gathered the multidisciplinary team of doctors, social worker, and case manager. We met with the grandmother and grandfather, helped them as they struggled with their love and devotion for Micah and the harsh realities of their advancing age. A wonderful nursing home near their house was found, one that the grandmother could drive to easily and still spend lots of time with Micah. So, when Micah was well, they all left, with that mixture of love and relief and guilt I knew so well.
The same mixture of love and guilt and relief my brother, sister, and I felt as we made the arrangements for inpatient hospice for our mom. She had moved into an assisted living facility near me when she couldn’t live by herself anymore. She had fixed me with a stare, and told me in no uncertain terms, that she had a living will, didn’t want any extraordinary measures, and would come back to haunt me if I let her be intubated. She pined for my dad, already dead 7 years. Things had gone well for 2 years and then the combination of congestive heart failure, renal insufficiency from years of brittle hypertension, and Crohn’s disease caught up with her. Eventually, we moved her to inpatient hospice. She got confused, thought she was a little girl again, quit eating. She died peacefully holding my hand. It was as good as it gets, as far as deaths go, I suppose. She’d had a great life, loved her career, and had a loving family.
I missed her but had gotten used to her absence.
I was fine without her. Really.
FINANCIAL DISCLOSURE: The author has indicated she has no financial relationships relevant to this article to disclose.
FUNDING: No external funding.
- Copyright © 2013 by the American Academy of Pediatrics