What Is Quality of Life?

“What is quality of life?” becomes a question many families of Alzheimer’s patients eventually ask themselves. To each person it’s different and even will vary as one becomes involved as caregiver for a family member. You also may be surprised with what you discover.

Before my mother developed Alzheimer’s, I never thought I’d want her to continue living at a stage where she didn’t know me, where she was dependent on others for her care, where she often lived in the world of her childhood. However, my view on this changed as I saw both Mother and her sister take the journey through their Alzheimer’s worlds.

I realized that even though Mother became less capable, often did frustrating things, might think I was someone else, she was still my mother. She still was interested, for shorter and shorter periods, in life around her and my activities.

As a former school teacher, she sat fascinated throughout the afternoon as I prepared a slide program about the Oregon Trail to present to youngsters. When I arrived home, she wanted a report on how it had gone, even though her thoughts drifted off soon after she inquired. I still have fond memories of that shared time together.

We’d bring out the quilt I made with her mother (my grandmother) when I was eight-years old. Mother recognized some of the pieces as fabric in a younger life. The reminisces of earlier days became treasured information I wrote down to share with future generations.

We looked out the patio door one evening and saw our reflections. Mother’s thinking these were visitors stretched my imagination. We learned that finding humor in situations we couldn’t control brought laughter into our lives and lessened the frustrations.

Later when Mother resided in a nursing home and seldom recognized me, my daughter, or my grandchildren, she still enjoyed the youngsters’ visits. “Such good children,” Mother remarked as they played around her wheelchair. Then she patted the little boy on his head. He looked up and grinned at his great grandmother.

Mother lived many years beyond what many people would consider a “life of value.” However, for my family and me, she added a dimension to our lives…one of caring, understanding, and laughter we would have missed if we’d thought her of no significance and discontinued caring for her and visiting her.

For those who think an Alzheimer’s patient has no quality of life, they haven’t experienced the joy of seeing someone’s face light up from a shared hug, kind word, or laughter even though they might not fully understand the situation or who you are. “Quality of life” takes on a new meaning when you consider it from this viewpoint.

©2003 Mary Emma Allen

(Mary Emma Allen lives in a multi-generational home in New Hampshire and writes about Alzheimer’s, including her book, “When We Become the Parent to Our Parents.”
She also gives talks at nursing homes and for caregiver groups. Visit her web site at: http://homepage.fcgnetworks.net/jetent/mea; E-mail: me.allen@juno.com )