It Shouldn't Be This Way: One Mother Faces Long-Term Care

Article excerpt

The demand for long-term care is increasing steadily. It is the best-kept embarrassing secret in the United States. Almost every adult in this country will either enter a nursing home or have to deal with a parent or other relative who does. Demographic studies suggest that 40% of all adults who live to age 65 will enter a nursing home before they die. Even more will use some other form of long-term care.

Some people believe that the key to dealing with long-term care is adequate preparation. Buying insurance and considering options for care should suffice. Alas, even such steps are not sufficient. People simply cannot rehearse the trials that long-term care subjects them to. That is why the system has to change. It is not enough to simply leave it up to each of us to be better prepared. Why should we gird up to battle a bad system?


Most people who confront this situation do so for the first time. Few people rehearse for this challenge. Few emerge unscarred. Despite all the theoretical discussions you might have had about what to do, it is suddenly thrust upon you. Most of us face it with one parent, sometimes two, but the circumstances always seem unique and the challenges new. Even those of us who spend their careers studying the phenomenon are not really prepared for the reality of dealing with it firsthand.

Our mother, Ruth Kane, died in a nursing home on May 29, 2002. She was 87 years old. Her death brought an end to a journey she never wanted to make. Along the way, she experienced the very things she dreaded most. A woman who was vital and active three years earlier, who used to spend hours coordinating her wardrobe, was now wearing sweat suits and living in a barely furnished room with few of the possessions she had acquired over a lifetime. She became disabled to the point where she was heavily dependent on others. She lost her sense of dignity, to say nothing of the elegance she aspired to. In a sense, she died some time earlier. The person we associated with our feisty, outspoken, independent mother had been replaced by a frail, demented old woman.

It was clear for several days that our mother was likely to die. She had had prior episodes of pulmonary illness and had bounced back, but this one seemed worse. The attending physician was in regular contact with her physician son, Robert, who lived in Minnesota. Her daughter, Joan, visited daily. Robert planned to come in a few days.


Earlier on the day our mother died, we felt she was improving a little but that the end was likely in sight. Joan had a premonition. She actually visited our mother twice that day. Then she returned again, when the nursing home physician called to say that our mother was dying. Joan and her husband rushed to our mother's bedside. Mother was still in the bed, but so blue and cold. Joan kissed her and held her hand for a while. Ruth's face was very peaceful. Joan felt quite numb. But it was finally over, and Joan experienced a mix of profound sadness and enormous relief. The staff members were kind, but it was the night group and Joan did not know them as well as she knew those who worked during the day. There was no sense of shared experience or shared loss.

Joan called her brother at once. Robert felt a sense of failure. He should have been there. He had chosen instead to visit his grandchildren in San Francisco, thinking that he still had a few days to make his last visit to his mother. He had seen her a few weeks previously and though he had never really said goodbye, he had already done his grieving. And so to him, too, at the end, her death seemed like a relief from having to live the life she feared the most.

Packing up our mother's few remaining possessions, we felt that her life should mean more than these fragments. Because her story is being relived over and over again by many older people who face an uncertain and unwelcome experience in long-term care today, we decided to write a book. …