"I'm sorry, Donna," I said. "How long ago did your son die?"
She put her face in her hands and sobbed. "Five years. Five years." And we were done.
The social workers were pleased; they said I'd handled things well, had been perceptive in seeing that Donna was still actively working through her grief, something important for them—and her—to understand as she ventured into hospice work. And Izzy had been a model of empathic restraint.
We all bonded over those weeks, eating cookies and sharing stories of loss from our own lives. I talked about the deaths I'd seen as a reporter, the two pregnancies we had lost before our daughter, Emma's, birth. I talked, too, about my fear of losing a sense of spirituality in my too-busy life.
We played hospice quiz games and watched hospice movies and talked to a stream of social workers, a warm, funny, intensely dedicated group who reported high rates of burnout and stress among their ranks.
The staff talked a lot about volunteer burnout, too, about the need to prepare for this curious truth: Everybody you are visiting will die, and your job is not to save them but to help them leave with as much comfort and dignity as possible. It will be wrenching, surprising, different every time. It isn't for everybody. There are support groups for us, too, numbers to call, help available.
We were briefed by lawyers and nurses and bereavement counselors. We were taught how to spot trouble—filthy conditions, spilled medicines, rising pain, family members breaking down—and to notify the hospice staff immediately.
We all had fears, doubts, and many questions. Could we bring food or books or other gifts? Pass out our phone numbers? What if we saw family members fighting or patients being mistreated? Could you sense death before it came? What was it like? What were the signs? What if somebody died while we were there? How did people grieve, and for how long? What was helpful and sensitive? What wasn't?
But training convinced me that I wanted to do this. Besides, it seemed no longer purely my decision. Izzy had enrolled. At the end of the summer, we completed our training, passed our background security checks, got fingerprinted (well, one of us). Izzy and I received our certificates and photo IDs at a ceremony complete with cake. We would be notified of our first assignment in a few weeks.
Soon enough, we were on the job. Keith mailed me a hospice assignment sheet, telling me the patient's name and address and condition.
On a muggy, late-summer afternoon, we drove to a small bungalow next to a church on a tree-lined street. I was anxious, going over the training in my mind. This looked like any other house, I thought—then chided myself for such foolishness. Why wouldn't it look ordinary? How easy it was to stigmatize death, to the point of expecting a dying person's house to visibly proclaim its status.
The patient, named Jamie, was 86 and in the final stages of Alzheimer's disease. No longer willing to be touched, terrified of even her own family, she was deemed difficult to handle. The social workers were concerned about her daughter, who'd exhausted herself and her savings caring for her mother. Hospice hoped a dog might help settle her; she'd been a dog-lover all her life.
The protocol was rigid. Izzy and I both had to wear our photo IDs, and I had to wash my hands, going in and coming out. We were not permitted to drive patients, to have anything to do with medicines or medical equipment, to perform any kinds of hands-on care. Technically, we weren't even supposed to touch the people we were visiting, although most of us trafficked in illicit hugs.
A former schoolteacher, Jamie had been moved into a first-floor bedroom in her daughter's house. Carol had been caring for her faithfully for several years, but it was growing steadily harder. Jamie slept much of the time, but often yelled or cried out when she was awake. It had become increasingly problematic for the nurses, or even her daughter, to bathe her or change her clothes; she seemed terrified of physical contact and struggled, sometimes to the point of bruising her fragile skin. Carol was worn and weary from the effort. Yet any suggestion of a nursing home was anathema.
Much of the time, the two women were alone in this small frame house, Carol sitting by her mother's bedside, reading or talking to her. Most of the neighbors didn't even know that Jamie was terminally ill, Carol said. They had few visitors. Once her mother had lost her ability to recognize them, friends had drifted away, and family members came by infrequently. She encountered growing problems talking to them anyway, Carol confessed; they seemed to inhabit some other planet.
When Izzy and I came into the house, Keith was waiting for us, as was customary when volunteers paid their first visit to new patients.
Carol, a slight, round-faced woman wearing a lavender sweatsuit, was pleased to see us, welcomed us, and knelt down to pat Izzy. I'd been warned that she was bone-tired and increasingly anxious about her mother, who might sleep all day and then cry out in the middle of the night.
In a tiny, meticulously clean powder room, I washed my hands, carefully and thoroughly, as instructed; Izzy waited outside the bathroom door.
I could see a bedroom at the end of the hall, decorated with family photos and fresh-cut flowers. As we drew closer to the room, I could hear a TV; Carol explained she kept it on most of the time, so her mother could hear voices and feel less lonely.
A beautiful older woman was lying in bed, beneath a summer quilt. Someone had carefully arranged her silvery hair, polished her fingernails, even daubed on a touch of lipstick. She was mouthing barely audible words and moving a bit restlessly.
"This is so great, the dog coming. She loved her dogs so much," whispered Carol as we entered the room.
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