The Loneliest Room, for My Sister in a Nursing Home

The pandemic has stolen away the chance to surround the sister we are losing to dementia with our love, so that she does not have to face death alone.

By Susan Nusser

When I saw my sister Peggy in her nursing home last June, she was sitting up in bed, leaning forward slightly and staring into the corner of her room. She was 67, and did not know who I was. It had been five months since my last trip to see her. That time, she was in a hospital psychiatric unit being re-evaluated for treatment for both bipolar disorder and Alzheimer’s disease. It had taken her a moment to recognize me then, but once she did she hugged me and kept up a stream of chatter as we walked laps around the floor.

But by our June visit, the only evidence that there was anything going on in her mind was the constant motion of her hands, drifting up from her lap to touch her face and then fluttering down again, like fledglings not quite able to fly.

I had been given special permission to see her because she had just suffered a pulmonary embolism and her hospice workers believed she was weeks, if not days, away from death. I flew from Milwaukee to Austin, and my other sister picked me up and drove me straight to the nursing home, where Peggy was recovering, having fought her way back to life, such as it was.

I rolled her wheelchair next to her bed and sat in it, quiet and still, hoping that she could feel my presence and that it was familiar and comforting to her. I held her hand. Taking deep breaths, I summoned all of my love for her. I tried to bring into the room every moment of the life we have shared as sisters. I felt my lungs expand and release what felt like a greedy abundance of good health, and I gave it to Peggy. Here is my health, here is my love, I prayed. Take it. I have too much.

While the nursing assistants came to change Peggy’s bedding, I talked to her treatment nurse in the hallway. When Peggy had arrived at this facility about two weeks earlier, she had bedsores on her heels and on her lower back. In Peggy’s room, her nurse changed her bandages, pointing out the wounds on her heels, which did not look too bad, but on her back, just above her tailbone, was a dinner-plate-size sore, yellowish and raw. “That has gotten so much better,” the nurse said, her finger air-tracing a circle that was about a third larger than the one I could see.

Both bedsores and pulmonary embolisms can be caused by lying in the same position for too long. No one accused her previous nursing home of neglect, but they made it clear that when she arrived, the sores were already there. They had developed over the first four months of the Covid shutdown when my sister, her primary advocate, was not allowed to visit.

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