Narrative Inquiry in Bioethics

My mother and dad were married for 49 years. He died at the age of 77 after 13 years of living with chronic lymphocytic leukemia. It was a good marriage, a true partnership. Now, at the age of 89, my mother had been a widow for 22 years, and she was into her 7^th year living with Lewy Body Disease.

One evening she asked me where Edward (my dad) was. She would often see him, she said, but he wasn't around that night. Where was he? Was he outside? Was he in the other room reading?

Running low on patience, I said, "Mom, he died 21 years ago. He is not here." She looked straight through me, with expressionless eyes that used to sparkle and dance with life and intelligence. Eyes now deep, dark, and flat. She was silent for a moment.

"Was he wearing his good suit?'

For seven years, I had been helping her live with dignity and comfort in her own home. When I was 66 years old, I retired, sold my house, and moved in with her. I was thankful that I could because I wanted to take care of her. But there were frustrations and challenges every single day. I was fortunate to have good help from a compassionate professional who had retired from 44 years of working in our community's nursing home. Otherwise, I wouldn't have been able to see it through, even though I told myself at the beginning of this journey that I could do it all myself.

Watching someone you love, someone who was so beautiful, intelligent, witty, and loving lose piece after piece of herself changed me; changed all of us who loved her. You don't come out of something like that the same as when you went into it. For me, almost four years later now, I have had to figure out how to remember and what to remember. Like the Barbra Streisand song, "The Way We Were" says, "What is too painful to remember, we simply choose to forget." I've had to do that to cope with the memories, with watching my mother spiral into the shell that she almost was the evening when she posed that question.

I was stunned by her question. At this stage in the progression of the disease, she did not seem to be connecting with her surroundings. Even though she frequently mentioned Dad and was always concerned about their twin infant daughters who died shortly after their birth, this specific question really threw me off balance. My impatience melted.

Somewhere in the very deep recesses of her mind, a spark remained. I thought back on the day we had almost gotten through, how difficult it was for me, but how much more difficult it was for her. She was unable to walk. She was shuffled from chair to transport chair, to the bathroom, to chair again, cared for physically in the most gentle of ways, made comfortable under her favorite purple throw, the next step of the day being the relief of bedtime, and another day done. Yet even in that diminished capacity for controlling her own life, she wanted reassurance that Edward was wearing his good suit when he was buried.

She waited for me to answer. Gathering up my own sadness, remembering that time 21 years ago, and all the years in between, the good years, and now some very bad ones, I found my voice and reassured her, "Yes, Mom, he was wearing his good suit."

I remembered an old Ann Landers column from years earlier. It's probably 30 years old—I still have it. I got it out to look at it last night while writing this.

Dear Ann Landers,

I'm going to tell you about a love story that I witness every time I go to the nursing home to see my husband who has Alzheimer's disease.

Unfortunately, I know firsthand how this terrible illness affects family members, but I would like the world to know what love really is.

I see a man who, as I understand, has...