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Lessons From a Life’s End

I’ve spent most of the past month dealing with my mother’s “condition.”

My mother, Evelyn Sims McNeil, hated euphemisms. So I should say that her condition was that she was dying. And die she did, on Nov. 13.

I held her medical power of attorney, which meant I made the decisions that she could no longer make, including how aggressive to be in treating her ills. In doing so, I learned important lessons about end-of-life care. My mother was a teacher, so in that spirit, I want to pass on what I learned, hoping it will be helpful to others who find themselves caring for someone who is approaching death.

The main lesson: Beware the emergency room.

Medical professionals and caregivers have a tendency to overuse emergency room services because of concerns about liability. In May, after attending my grandson’s high school graduation, I came home to find a phone message saying that my mother had fallen and had been transported from the group home where she lived to an emergency room.

I rushed to the emergency room, where she was initially glad to see me—but then decided that the doctor, the nurse and I were “rats.” My mother, a few months short of her 96th birthday, had recently been diagnosed with dementia and was suffering from worsening paranoid delusions. Though she was moving around the emergency room forcefully enough to make it clear that she did not have any broken bones, the staff insisted on pelvic x-rays. At that point her delusions took full control, and I had to struggle, while she tried to hurt me, to keep her from throwing herself off the x-ray table.

Misadventures at the emergency room

Later that summer, my sister J.E. McNeil and I tried to have our mother admitted to the psychiatric ward at a local hospital until her medication for the dementia could be adjusted. Despite daylong efforts by us and her psychiatrist to reach the doctor in charge of admissions, we ultimately failed. She was admitted only after being taken to the emergency room, which prolonged the stressful and difficult situation by several hours.

She went from that hospital to a facility that specializes in care for patients with dementia. After she achieved some equilibrium from medication, she returned to the group home.

In September, I returned home on a Friday evening to find another phone message, saying that my mother was going to be taken to an emergency room because the nurse at the group home was worried that a bedsore on her back might turn fatally septic. I argued against it, but the ambulance was already there. I met her at the emergency room, where the doctor and nurse looked at the wound, pronounced it healing and said she didn’t need to be there. Three hours later, after waiting until an ambulance was available, she returned to the group home, lying on her back on a gurney for the bumpy ride back.

In October, my mother’s doctor and the nurse at the group home recommended that she be seen by the Wound Care Center at Shady Grove Adventist Hospital in Maryland. They said that she would have to be admitted through the emergency room.

By then, I had grown wiser. I didn’t take their word for it. I called the Wound Care Center and asked how I could get an appointment for my mother. The next day she traveled to the center not in an ambulance, but in a taxi equipped to carry wheelchairs, and was seen immediately when she arrived.

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