My father died suddenly of a heart attack at 86, leaving behind our mother, his wife of sixty years, suffering from dementia. My two older brothers and I, all of us some distance from their home, had not discussed the next steps in providing her care. Providing fulltime caregiving in her home we soon referred to as the “Mary Poppins solution”: it just wasn’t possible.

My eldest brother (nearest geographically) took her into his family’s spacious home. Although this arrangement lasted several months, it was untenable. Both he and his wife worked during the day, so Mom went to an “adult day care center” euphemistically referred to as her “club.” But at home the physical arrangement - bathrooms on the second floor, bedroom near an open staircase - was impractical and unsafe, not to mention there was the wear and tear of her progressing dementia.

This brother initiated the next step: finding an assisted living location specifically prepared for residents with dementia. These are increasingly available, but they need to be vetted as to their suitability for your loved one. As a physician my brother used his network to find a site less than ten miles from his home. An excellent facility: the door to the street was locked, and once inside the unit, “pods” of about eight “apartments” (each with bed and bath) opened into common areas for dining, entertainment, and even access to an enclosed outdoor courtyard. Staff were well-trained in working with people whose behaviors were affected by dementia; they were uniformly kind, gentle, and firm. Although my mother still “packed to go home” every day of her stay at this “hotel”, she was not unhappy and was frequently visited by members of the family. My husband and I and three young children lived three hours away, but we got there to visit. Our third brother lived in Hawaii, but stayed in touch with by telephone.

The severe diminishment in her quality of life began when she fell and broke her hip. At the hospital, doctors were eager to operate and repair it, and we siblings agreed by phone. The operation was a success, but she had to go to a different facility for rehabilitation – which failed miserably. In her diminished mental state she was unable to remember what had happened and that she needed to work with physical therapy in order to re-learn to walk. She never got out of the wheelchair again, and so the assisted living facility was unable to take her back.

A long-term care facility was the only option. I stepped up to the plate, because I lived near a facility renowned for its care of dementia patients. We are about three hours from the city in a beautiful natural setting and the nursing home was minutes from our home. She arrived there at the height of a spectacular foliage display in October. But she did not settle in well, despite heroic efforts of a well-trained staff. Forgetful, she kept trying to stand up when she could not. As long and sleepless nights became her fate, my brothers and I agreed her quality of life was much diminished, since she had been a happy, generous, and gregarious person all of her ninety years.

When she developed pneumonia in January, we asked she not be hospitalized for intravenous treatment, but that she receive comfort care and pain medication. As her life slowly ebbed away, we were able to be with her constantly as the facility allowed us to stay overnight. One afternoon, after all the grandchildren had visited following a ski-trip, rosy-cheeked and bubbling, she let go and slipped away from us peacefully.

We did well to use word of mouth and personal references to find the best possible setting for her as each became needed. One thing we did not do so well was thinking ahead about the possibilities. For example, if we had talked about it, we might have chosen not to have her undergo the hip operation and simply allowed her to remain bed-ridden with hospice pain medication. Her life would have been shorter, but without the mental and physical suffering of the last few months. Those responsible for making these decisions should have a mutual conversation about possible problems and solutions ahead of time to avoid the kind of second-guessing that happens in a crisis state.