Sometimes you will never know the value of a moment until it becomes a memory…Dr. Seuss
There are many reasons why we would want to record a person’s story or history, but when a loved one has been diagnosed with Alzheimer’s or another dementia-related disease, the reasons become more urgent:
- to preserve history
- to preserve our elders’ wisdom and stories
- to recognize that persons with Alzheimer’s or another dementia-related disease are ordinary people who have often led extraordinary lives
- to change perceptions
- to create deeper understanding and compassion
- to encourage mental stimulation and a sense of well-being
- to hone cognitive skills
- to encourage a sense of identity and help retrieve the person’s sense of loss
- to enhance a person’s self-worth and self-esteem
- to create a more loving connection between the recorder (family member or friend or volunteer) and the person with a dementia
When I visited with my mother in the long-term residence where she lived, we would often sit together and look through photo albums. I had made a family photo album on Shutterfly for her birthday two years ago and it was a big hit with both my mother and the staff at the residence. When I needed to distract her I would pull out the photo album as it always calmed my mother, and often caring support workers would retrieve her albums for her whenever they sensed that she was feeling low or depressed.
Rarely would my mother look through the more recent photos of our family – my son’s wedding at a cottage setting (which she attended); our family’s annual weekend in Toronto to attend a Blue Jays game; Thanksgiving or Easter dinner gatherings – none of these interested her in any way. (Of course, we know now that persons with Alzheimer’s disease do not retain newer or recent information; instead past memories from an early age are often still intact until the later stages of the disease.)
But, let her eye catch a photo of her own wedding, or a day in the country when she was a young teenager, and she would be transported to a happy time and her stories would tumble out of her. She barely told one story in its entirety…the stories were jumbled and it was difficult to follow them. At the time I remember that I thought that I didn’t dare record them as they were too disjointed and confusing.
Since then my sister, my kids and my husband talk often of her stories and between all of us I believe that we could have recorded them and made sense of them. Instead, her best friend, while at my mother’s funeral, told us that my mother often regaled her friends with stories of life in the army as a cook (during World War II) and that my mother was often the life of the party. What?? Really?? No, how did we not hear of these stories? As children, it was our father who we remembered as the life of the party! Not my mother!
We lost an opportunity to capture her life story in her own words. And I believe that she would have enjoyed the process and the attention! She loved the limelight – sometimes. She was (like most of us) a dichotomy.
She liked to show off and kick her legs up even when she was in a wheelchair during the last few years of her life. Many of the staff asked me if she was a ballerina in her young life. A ballerina? Not that I know of…but she loved to dance. (That I did know.) Many of our fondest memories are of our mother and my aunt dressed in their finest dancing dresses showing their latest dance moves before they went out for an evening with my father and uncle. Back then I thought that she was absolutely beautiful and exotic.
But my mother also shunned people and disliked people fussing over her. She had very lovely black and white hair, a grey platinum shade (even at 91), and its unusual colour encouraged staff and volunteers to pat my mother on the head – oh, she disliked that! She would “riff” for hours if someone patted her head. I would try to console her and remind her that because people liked her, they would stroke her hair. She would just hmmmpf!
Whether she liked to kick her heels up or start singing a song out of the blue…those acts were done on her terms. Her quiet acts of rebellion were her response to her loss of control in most areas of her life.
And for that reason, I believe that she would have liked us to have recorded her life story. She would have basked in the attention and limelight! And her story would have been on her terms. Yes, disjointed. Yes, garbled somewhat. But, still her story. And that alone would have pleased her.
But as you know by now, my mother died last month…so this project is a little too late.
As soon as possible, I am going to begin to record some of the stories of residents at the long-term care facility where my mother resided. Before it’s too late.
My intent is to begin the process with some basic questions about birth place, schools, friends, parents, grandparents, and proceed to the big life questions, the questions that explore the meaning of life.
- What are you most grateful for as you look over your life?
- Tell me about your happiest times?
- What makes you happy today?
- Tell me about your accomplishments and what you are most proud of?
- What is your greatest strength? Tell me how this strength has served you.
- What gives you joy?
- How would you like to be remembered?
- What word means the most to you, and please explain: Love, Trust, Faith, Hope, Joy.
- If you were to teach one lesson only…what would that lesson be?
- What are your hopes and dreams for the next generation? Your grandchildren?
- What can we do each day to make a difference in this world?
After caring for both my father and my mother who both had Alzheimer’s, I have no delusions that persons with Alzheimer’s or another dementia-related disease will be easy to interview. In fact, I suspect the task will be quite challenging. I am prepared that many visits will be necessary, and ironically since the clock is ticking, that many visits will be futile or lack substance. I think we need to be prepared for those challenges. I will go with the flow. (Since I am always preaching it.)
But I also believe that the journey itself will be illuminating; the process itself will be enriching for all of us. And that is always enough.
Our loved ones who have dementia-related diseases and our elders (who do not have a dementia) have gifts to share – we must try to recognize those gifts and we do that by giving a voice to them.
Sit in silence and take time to listen…be open to connecting to another person. Give space to your loved one so that you can hear the stories. The reward will be shared gifts.
“In the end, only the stories survive.” Glaciers, Alexis M. Smith