As my mother continued to experience cognitive decline and lost the ability to form a sentence, I became her advocate—and her mouthpiece. While medical staff and personnel bolstered the woman in front of them, I wanted them to know the mother inside.
I began to tell stories about her to caregivers. I related how, every Christmas, she baked thousands of cookies. When visitors arrived for the holidays, the youngest child was tasked to plate the cookie tray. This involved reaching deep into a Charles Chip can for fried twists, pulling Tupperware from the freezer for chilled pinwheels, and sneaking a sticky Corn Flakes wreath from the stash before presenting the platter. On a whim, I wrote out a list of the cookies she rolled at Christmastime and stopped around 35.
What could we learn about my mother from this? My mother was a talented, productive baker. She doled out chores, socialized often, and loved to entertain. She was organized, detailed and methodical. Everything had its place. Most of the attributes found in that description translated to attributes she still possessed—despite her dementia
We make sense of our lives through the stories we tell. When I recounted those tales and others about my mother, I further grasped where she was on the continuum of memory loss.
As a younger woman, my mother’s father died before she was born and her first-born son only survived for two days. She eventually watched as a son-in-law died from cancer, her daughter’s health succumbed to alcoholism, and her husband fell victim to Parkinson’s. By recapping her past, I sketched and filled in a picture of my mother to include the pieces of her that were missing due to memory loss. Soon, caregivers, doctors and nurses wanted to know more. Armed with that knowledge, they deepened the bond with their charge.
While some called it person or patient-centered care, I used the phrase story-centered care.
Person- or Patient-Centered Care
The term patient-centered care came into use in the late 1980s, as doctors and hospitals turned more of their focus toward the patient. According to the Picker Institute, patient-centered care is a model in which providers partner with families to identify and satisfy the full range of patient needs and preferences.
In person-centered care, the patient took charge of their well-being and the medical staff took the needs and desires of the patient into consideration.
The concept of story-centered care encouraged caregivers to take into account the entirety of one’s experiences, from birth or trauma, to celebration and death, and encompassed one’s physical and emotional overcomings on a path toward healing.
For many, our loved ones are not patients nor can they take charge of their well-being. My mother was a resident, a person and a human. She would not want to miss being in her own story, however, she needed someone to tell that version to others.
The Language of Story
Our parents narrated our first bedtime tales. In school, our teachers read to us. Then, our children became the intended audience. We can think of our loved ones as listeners of a book we are reading together in which specific characters, events and experiences influence each other to form a meaningful story.
Think about the stories we are telling to those in our care. What stories are we telling ourselves? How can the language of healing offer comfort and wisdom?
Following the loss of her first born, my mother gave birth to five healthy babies. Her gratitude was as never-ending as her cookie list. She survived breast cancer, an appendicitis, and arthritis. She told herself a story about strength, and lived by the mantra to “go where there was a need”.
When my son was born premature, my mother had flown across country and carried a vegetable lasagna casserole through security. She was first to bathe my son because of my limited mobility following surgery. Unbeknownst to me, she had been diagnosed with breast cancer weeks before. The account she relayed was of setting aside her health for the sake of her children. The other report she gave was how the early birth of her grandson allowed for my mother’s treatments to continue on time.
Caring for my mother was made easier by the stories I learned to tell about her, about her family or just the two of us. Caregivers agreed.
What is the story our loved ones are inside of now? Marge makes the staff and caregivers smile when she eats Cheetos and licks her orange fingers. Big John sings John Jacob Jingleheimer Schmidt when someone he doesn’t recognize walks through the secure door.
An ancient African proverb states when an old person dies, a library is burned. We carry so many stories inside us throughout our days. We can use a few of them to keep caregivers and medical staff engaged in the well-being of our loved ones.
Annette Januzzi Wick is a writer, speaker and author of I’ll Have Some of Yours: What my mother taught me about dementia, cookies, music, the outside, and her life inside a care home (Three Arch Press), available through online retailers and distributors. Visit annettejwick.com to engage her services or learn more.