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 )

A Privilege to Care

So few people understand how I could find joy in caring for my mom and aunt with Alzheimer's...and to continue writing and speaking about this experience to encourage others. So many people I've talked with, as I've spoken to groups around the country, feel caring for a family member was a traumatic experience and one they’d like forget.

I would rather my mom and Auntie hadn't endured Alzheimer's. However, it wasn't for us to decide. Once I realized they had this disease, my aunt first and then my mom, as she was caring for Auntie, I certainly couldn't turn my back on them.

They developed Alzheimer's in an era when this disease wasn't talked about very much. Families almost wanted to deny their loved one had it. Support groups and networks for caregivers were very few. However, my neighbor, who was responsible for her great aunt with Alzheimer's, and I helped boost one another. We shared experiences, laughed and cried, and found new ways to appreciate these ladies.

Now that Mother and Auntie are gone, I realize I was given an opportunity to make two ladies happier, midst our frustrations and discouragements. I was given an opportunity to learn about caring when roles are reversed, when we come upon the unexpected in life, when we rather the situation were different.

As I look back, I understand that I was given a privilege to care for Mother and Auntie and learned about love in a different phase.

(c)2005

(If you have questions or information to share, e-mail me: me.allen@juno.com; type "Alzheimer's Blog" in the subject line.)

Sharing With Caregivers

When I mentioned I’d cared for my mom and aunt, who developed Alzheimer’s, the young woman I met while waiting at the airport immediately remarked, “We need to talk.”

It turned out she thought her Father might be developing Alzheimer’s and simply needed to talk with someone who had been through this situation of seeing a parent overcome with this disease and trying to help them.

So many people simply need someone to talk to, find a shoulder to lean on, a person to reassure them they can cope as they help their family member. That’s why I began writing newspaper and magazine articles on this topic, which evolved into my book, When We Become the Parent to Our Parents, and contributions to other books.

I also give talks to caregiver groups and in nursing homes to connect with caregivers, whether they’re family members or doing this as their profession.

“Alzheimer’s is a devastating disease,” I often say. “But it doesn’t have to devastate your or your family member.”

(c)2006

(If you have questions or want to share, e-mail me: me.allen@juno.com. Type "Alzheimer's Blog" in the subject line.)