Author and caregiver, Annette Januzzi Wick, shares her own personal experiences with Alzheimers.net about her mother’s cognitive decline and obstinacy.
Obstinacy Before Dementia
When I was younger, my mother rode her Schwinn bike to our ballgames, to that space called the “fields,” large blocks of grass that were the summer salvation of every kid in town. When Mom had made her rounds through our games and pleas for snack money, she cycled her bike home. That was the only time she spent on a bike.
My mother also enjoyed strolls on the beach. Not walks, but strolls that didn’t last long. Her only requirement was that she remain in the sun. Even when she visited in Oregon, where my husband and I embarked on walks along the coastline, her efforts were cut short (the wind, my hair, this isn’t good for the baby).
My mother wasn’t lazy. After all, she had carted laundry up and down the steps at age 80. She traversed Italy with vigor at age 78. But she just wasn’t the outdoors or exercising sort of gal, unless the sun was involved. Then, she could sit for hours or for her infamous twenty-minute naps.
In seventh grade, when I informed my mother about running track, she looked at me with amusement and disdain. Oh, and I wanted to run hurdles, I told her. The advice she gave back had nothing to do with training: “Well, that’s going to make your thighs bigger.” I gave her a seventh grade-version of “me ne frego” and ran the hurdles anyhow.
Cognitive Decline and Obstinacy
As I look back, and attempt to engage a mother with dementia in exercise-related activities, I realize that Mom did not like to sweat. Mom was of that era when encouraging, actually producing beads of sweat that would roll down your thighs just wasn’t supposed to happen.
Fast-forward to her years now, and the days of spending quality interactive time with my mother are few. The best care homes offer a multitude of activities, not only for the residents but also for family members to interact with a loved one.
Thus, on many occasions, I arrive at Mom’s care home in time for exercise hour. I have sat beside Mom while we billowed a parachute up to the ceiling. We have whacked at balloons, playing volleyball. But she would never stand up to move in Jane Fonda fashion in the same way she might be motivated to reach for a cookie.
Despite my mother’s aversion to sweat:
I often break the cardinal rule of caregiving by caring only about what I think is best, not what Mom wants.
When exercise is on the schedule, for certain I will cajole Mom into walking the corridor to activities. When we arrive and she is seated, Mom glances around at the other residents or comments about someone’s coat. In general, she will do everything but exercise.
But Mom can follow instructions. If I ask, Mom would you like some chips, and hold out the bag, she readily thrusts her hand into the bag or will instantly grab the bag and keep the chips for herself.
She knows to put her arm in the sweater if I am helping her, or lift a leg or move here or there. So, she should not be challenged in lifting an arm or a leg when directed. Somehow, Mom knows this is exercise and simply refuses.
A chair exercise video was airing during my last visit. Mom could hear the audio because she repeated the words of the on-screen instructor:
“Mom, lift your arms.”
“Lift your arms.”
“Look, one, two, three, four.”
She scrutinized the movements of those around her and crinkled up her nose.
“One, two, three, four,” I repeated.
Nothing. No reply.
“Shoot like you are playing basketball,” the instructor called next.
“A what? Oh you’re crazy,” Mom exclaimed.
Finally, the instructor focused on legs.
I got down on my knees on the floor and began to swing Mom’s legs.
“One, two, three, four.”
The counting continued and I was deep in concentration. I didn’t want to yank Mom’s legs too high and didn’t want to let her feet rest low.
Finally, I looked up at Mom.
She was swiveling her head around, as if she were a puppet on a string.
Greg, a rather youngish male resident seated nearby chuckled, but said nothing.
I plopped on my backside and laughed too.
I was exercising for her. I was sweating for her.
I should give up, but a part of me still makes the attempt, as revenge for her years of (lovingly) mocking my tomboy manners.
A part of me applauds Mom for fighting for what she wants, and not what her daughter deems necessary.
About the Author
Annette Januzzi Wick stands at the intersection of words and life. She has developed an authentic voice, stemming from experiences of leading and connecting in various communities through creativity and words. Her passion for developing links, for rooting people to a certain place, is evident in her writing and her life and conversations, covering issues not always apparent on the surface but drive straight to the heart of humanity. Learn more about Annette at her website: http://annettejanuzziwick.com/.
Do you have experience with cognitive decline and obstinacy? What suggestions do you have for caregivers? Share them with us in the comments below.