My typical walk at the ranch is more like an inquisitive meander.
I may start toward the lake until following the flight of an unfamiliar bird turns my heading into a thicket of cedar, where I traverse until the thicket is impenetrable, and I must turn and cross a canyon wall, where maiden ferns clinging to the side pull me over for an examination up close, only to discover a rock ledge of fossilized oysters layered in their bed as they were millions of years ago, when hundreds of daddy long legs hanging upside down from the ledge begin to pulse and fall to the forest floor, sending me scrambling as the sound of their spread across the leaves remind me of rain, which I realize has not fallen in weeks, as I walk the dry wash down the gorge that takes me to a fence line blocking my way, so I turn again…
A circuitous path set by what catches my eye each step of the way, my walks at the ranch are a plod without a plan for where I end up.
Today I walk briskly, focused and forward facing. Each footstep holding significance. Each strike of the earth confirming the solid foundation my feet provide.
The purpose was walking.
Not to any destination.
Not to look for marvels of nature.
Not to feel the air.
Not to clear my head.
Not to think.
Not to discover.
To proceed step by step. To place one foot in front of the other. To advance forward.
My mom is no longer walking.
Eight years of caregiving responsibility for my mom, this change is a new stage of her dementia. Again.
Unknowing characterizes this disease. Loved ones seek comfort in understanding the labeled stages of cognitive decline, yet we have no understanding when or in what order decline occurs. What is 100% known is that just when you come to terms with the present stage of decline, a new phase begins. Sometimes I’m ready and grateful a difficult stage has passed. But walking? Walking is a significant life skill to see go.
I have a strong mom. A tomboy and athlete, always working around our home, my mom was physically active. Despite dementia, she still has considerable strength. Her grip is a vise if she stubbornly won’t let go of your hand while you are trying to help her. And she is queen when playing balloon toss, with quick reflexes and a swat that sends a balloon flying across the circle of wheelchairs around her.
Her inner strength shows less on the surface but announces itself when the circumstance calls. A preacher’s wife with five children, she was called by circumstances plenty. When my mom has an opinion, she may or may not speak the words, but a look or action makes explicit her point.
Dad was the one in the public spotlight, but mom was not always riding in the back seat of the relationship. A portrait of mom given to my father when they were dating has an inscription on the reverse side that paints this picture. Mom knows what she wants.
No physical or inner strength is a match for dementia.
Mom’s legs are strong and her desire apparent, but her brain no longer makes a connection to tell her legs how to take a step. Five years ago, when my mom moved into her memory care home, she was “the walker.” She lapped the building a hundred times a day — no sitting around for her, always up and trying to go somewhere… or go home.
Last year, when my sister was in town for a visit, she returned to my house after visiting mom and asked, “why doesn’t mom walk?” I remember what a curious question it was because mom walked constantly. When I challenged her assessment, my sister replied, “Well she won’t walk today.” That day began a year of walking decline.
Physical therapy to gauge her strength and blood work to confirm her wellness ruled out obvious reasons her legs would not take steps independently. The knowledge she used in the past to get up and walk had vanished.
The safe part of not getting up was she would not stand on her own and fall. And, she no longer wandered into the wrong room or stood up and left the dining table ten times before her meal arrived or walked around seeking her way somewhere in the middle of the night. Not walking had a convenience to it.
Every parent can recall the exhilaration of your child’s first steps — how proud you are for their accomplishment. And yet, you soon realize the increased responsibility of watching their every move to keep them safe as they toddle around the house. If you’ve been a parent, admit it, once your child started walking, the thought of how convenient it was when they sat in one place crossed your mind more than once. A stint in the bouncy chair to contain them while you showered or cooked gave you relief and a sense of safety. Now, it was as if mom was in a permanent bouncy chair unable to navigate from her sitting position.
At that time, mom could still walk once someone helped her stand up. My goal was walking with her as much as possible to maintain her mobility, muscle strength, and body function. Each visit we walked around her home and ventured outside as much as possible.
As her gait became less steady and her feet started to shuffle, our walks side by side turned into walks hand in hand.
I have held my mother’s hand more in the past two years than all the preceding years of my life combined. There is a profound power in the act of holding hands with your mom. As an adult, I did not hold hands often with a walking mom — not for any reason other than it wasn’t “necessary.” She didn’t reach for my hand as much as I didn’t reach for hers.
Now, holding mom’s hand has an intimacy to it. For her, holding my hand is an instinctual act like a baby who grabs your finger and squeezes it tight. For me, holding her hand is giving her reassurance, comfort, and help. As a child, she held my hand to guide me, and now I hold her hand to guide her. For both of us, we experience a powerful spirit of love and connection that helps our well-being. I count it as one of the unexpected blessings of caregiving.
The next phase of decline brought a pause in mid walk. Mom would walk along and suddenly her feet would plant as if stuck to the floor. We resorted to singing strategies.
We chanted, “one, two, buckle my shoe; three, four, shut the door; five, six, pick up sticks; seven, eight, lay them straight; nine, ten, do it again.” Recite this chant imagining a step at each count, and you will sense the pace of how we marched.
If mom was irritated, she would put extra emphasis on “shut the door” — stressing each individual word in a firm angry manner as if she was commanding us to get out of her sight and slam the door behind us! If she was in a playful mood, she would substitute the final verse of “do it again” with “nine, ten, a big fat hen.” Then she would smirk and laugh, like a grade school child making a potty joke.
It fascinates me how singing is so effective in so many situations. If you can think of a “walking” song or a song where the verses can be manipulated to imply “get going,” we have tried it — “the driver on the bus says move on back, move on back, move on back;” “if you’re happy and you know it, take a step;” “Onward Christian soldiers, marching as to war.” When I sing that last song, I think hard at the mention of the word war. Trust me, with caregiving, there are days I am in one.
Singing is effective, and I select songs with lyrics that instruct to get walking, but I’m learning those words might be more for me. At mom’s stage of dementia, I no longer believe the word meaning is what gets her moving. The cadence that calls up a march is what sets her on her way.
This is hard to admit — that words are losing meaning. My mom was an avid reader, reading one or two novels a week, recording every book she read in a log. In the margins of her log, she inscribed humorous editorial comments and pointed out if the book contained profanity, an inclusion of which she did not approve.
She is still a good “reader.” Her concentration ability matches the sentence length of children’s literature. To hear her read a children’s book is like listening to music. Her inflection at the appropriate time is spot on.
Go Dog Go is one of her favorites. Find this book and read it again. Joy is in the simple words, humor, flowing rhythm, declarative statements, and oh the many questions and exclamations! “And now do you like my hat?” “I do!” “What a hat!” “I like it!” “I like that party hat!” “Goodbye.”
Reading and comprehending are two different things.
As the year went on and walking decline continued, I bought mom a walker to help her stay steady and afford her to walk without leaning on me. She did not understand how it worked. She stood using it as a brace but behaved boxed in. We placed a piece of tape on the front bar with the words on it, “Push and Walk.”
She “read” the words beautifully. In the manner of reading a children’s story, she repeated the three words over and over — placing different stressors on the directive to walk. First, as if she was a preschool teacher instructing a child in the most loving way, she would read aloud, “Push and Walk”. Then, with the emphasis in tone going up, her rising voice would recite, “Push and Walk.” Finally, with her eyes opening big seeming excited with the news, she would stretch out her neck and suggest, “Push and Walk!”
To hear her read is heartwarming. But the words did not move her. Her feet stayed planted. She would stand and just “read.” I would reach over and give a slight push and take a step forward with her, and the motion would be the clue to move.
A few months later, and now, on a good day, we help her to a standing position and she can take a few steps while holding my hands as if dancing in extra slow motion.
After 85 years of knowing how to walk, she is now unknowing.
So much known is lost at my mother’s home. She lives at a memory care residence with 20 people when at capacity — filled with important people who did important things and made a world of difference in a world they can no longer remember.
Since moving to her final home on earth, mom has lived with a doctor who served U.S. Presidents, an accomplished photographer represented in famous museums, a store owner, an engineer, a renowned dance choreographer with worldwide influence, a three-star general, a concert pianist, several military veterans, homemakers, a nurse, mothers, fathers, siblings, spouses — we should remember their stories. Mom will never know them.
Regardless of life history, all who live with mom are dependent on caregivers as they follow a course of constant decline.
“I” is used in this story because it is my experience I am sharing with you, but “we” and “us” is not casually applied when it appears in the text above. I see mom most days, but there are 168 hours in a week, and every minute of those hours caring is taking place. I am beyond grateful for the caregivers who help my mom and future posts will include their stories.
I finished my ranch walk, a few more tears shed, but I ended up back at the house with a smile on my face. A brisk walk, straight out and back, renewed my resolve I can do this. I will return tomorrow and walk with my mom. I won’t hold her hand but the handlebars of her wheelchair. As I push from behind, we will sing, and the cadence of the wheels will move her forward, and we will smile and laugh, and we will continue…