8: My Role Matured as I Did

8: My Role Matured as I Did

From Chicken Soup for the Soul: Family Caregivers

My Role Matured as I Did

We don’t see things as they are; we see them as we are.

~Anaïs Nin

Even at the age of four, I somehow knew that phone call was the beginning of a significant change in our family. When my shocked grandmother, unable to speak, nodded to Mom to take the phone, I knew that our family would never be the same. On May 26, 1972, I became the daughter of a father with permanent physical restrictions who would need his family in a different way than ever before.

My role as a caregiver—or caring role as I like to think of it—matured and grew as I did. Initially, as a four-year-old, my role was to make sure that Dad was okay and make him smile. Our family temporarily moved to Halifax, Nova Scotia—a big city to us at the time—to make daily visits with Dad during his five months of hospitalisation.

Dad was strapped into a Stryker bed, which was flipped every three hours so that his paralysed body would heal. My role was to entertain Dad, which often involved homemade gifts like painted paper plates with macaroni carefully placed to say “I love you, Dad.” As he had limited use of his arms, I would crawl under the Stryker bed that was holding him in place while he was facing down. Replacing his usual view of a hospital floor, I would show him his gift, hoping to make him smile. He always did.

When Dad was released from the hospital—confined to a wheelchair—we returned to our small farm in rural Prince Edward Island. My role grew. I became the helper, the door opener, and the spirit builder. I accompanied Dad regularly to a rehabilitation center for physiotherapy as doors can be challenging when you can’t open them yourself.

In my role as door opener, I reaped many benefits. I can vividly remember stopping at Stedman’s Department Store. Probably exhausted from physiotherapy and overwhelmed by the idea of climbing the stairs, Dad handed me some change and told me to buy something for my sister and myself. I recall looking at two small toys in one of my little five-year-old hands and the change in the other, wondering if I had enough money. I could see my dad watching me from the car, but I couldn’t exit the store with the toys or read the price. I decided to take a chance. Luckily for me, the cashier smiled and nodded as I held out both hands with the toys and the change, asking if I had enough money. I often wonder if she supplemented my purchase after I left.

As Dad progressed from a wheelchair to a walker to crutches, he had to find ways to feel satisfied about how he was achieving and contributing to the family and community. Carrying out the previously “normal” tasks when you need your hands to keep you from falling became challenging, if not impossible. My role as facilitator began. It included carrying whatever needed to be carried, feeding the cattle, seeking assistance when needed, and watching patiently, ready to jump in when my dad’s raw determination was not enough.

As a child, it did not seem bizarre that a man without the ability to walk could run a small farm until I heard a comment on a hot summer day in a hayfield. One of Dad’s friends dropped by with another man. Dad was on the tractor. My older sister, Raeona, and I were tossing bales of hay onto the wagon where Mom was building the load. I noticed the stranger staring in disbelief as I heard him say to Dad, “How do you get your family all out here working together? I can hardly get mine to have a conversation.” At that moment, I realized that we made sacrifices. Interestingly, I hadn’t considered that not helping out was an option.

We did miss out on some “normal” events. Dad could not come to school concerts, basketball games, and other events when my friends had a strong family presence. I didn’t have the chance to run in the park and be carried on Dad’s shoulders when I was tired.

But as an adult, I realize what I did gain growing up by watching my dad heal his body, spirit and life with the determination that only a temporarily broken man could demonstrate. I learned that it is okay to crawl when it is too icy to get from the house to the barn or when your crutches fall out of reach. I learned that shame and respect are closely related; it is up to us to decide whether we will be ashamed or accept ourselves and others as complete with fully functioning and broken pieces. Mom still has a family portrait I painted in second grade showing my father with two silver sticks as extensions of his arms. That was my family as I knew it—crutches and all.

Most of all, caregivers learn to care. They see the need to open the door for the next person, even if it may be inconvenient for a few seconds. They learn to see the needs of others even when it hurts. They learn to protect more than be protected. I am shocked over and over when people do not hold the door for others, do not think to offer their bus seat to an elderly or struggling person, or show genuine indifference to the wellbeing of another. Caregivers understand the need to smile and appreciate that everyone needs to contribute and have a sense of community.

In a discussion about a challenging situation, a friend once said to me, “It’s like you’re an old soul. Where did that come from?” Without hesitation, and admittedly to my own surprise, I responded, “I grew up with a father who is disabled. Early in life, I would decide when it was time to be a child or time to be a problem solver. I guess it affects your perspective.” My own words reminded me of the sacrifices and benefits of being a caregiver.

Recently, a participant in a seminar that I facilitated commented that I had “comforting eyes.” Although I may have missed out on having my father applaud or cheer at concerts and sporting events, on enjoying a ride on my father’s shoulders in the local park or the chance to watch my parents dance at my sister’s wedding, I had the opportunity to develop comforting eyes and everything that goes with that. I watch with delight and a little bit of sadness as my nine-year-old niece and 20-year-old nephew develop and grow into their comforting eyes; they enjoy the company of their loving grandfather, who needs them in a unique way.

So when you notice “comforting eyes” in caregivers that you encounter, know that they will be there for you if you need help—because that is what they do.

~Debbie Matters

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