66: A Journey of 4,000 Miles

66: A Journey of 4,000 Miles

From Chicken Soup for the Soul: Family Caregivers

A Journey of 4,000 Miles

The greatest explorer on this earth never takes voyages as long as those of the man who descends to the depth of his heart.

~Julien Green

The anguish that I felt at the onset of my mother’s Parkinson’s disease grew more profound as she deteriorated. She had always enjoyed a life full of multiple and diverse activities, and her accomplishments were numerous, ranging from award-winning golfer to licensed pilot. She loved the outdoors and all of nature, and was deeply involved in social and civic activities. She truly loved people, her community, and being on the go.

As my mother’s condition worsened over the years and dementia also developed, she was less able to do the activities she loved so much, either indoors or out. My father did his best to care for her, but with his own health declining, it was becoming more difficult. It got to the point where he couldn’t even get her outdoors anymore.

I lived near my parents through all of this, but frequent business trips took me away a lot. I always stopped by my parents’ house when I was in town, though. With each visit, I made sure to get my mother out and about even when she was eventually confined to a wheelchair. While her movement was more restricted due to the disease, I still promised myself to help her enjoy her favorite activities in new ways, whether it was watching a golf game at the course rather than playing, or sniffing roses in the garden rather than cultivating them. I knew these activities brought joy and enrichment to her life by the small gestures or sounds she could still express.

When my father passed away at 79 years old, my mother had been experiencing Parkinson’s for 20 years. He had done an admirable job of caring for her with love and patience. But it had come to the point where she could no longer move on her own or take care of herself in any way. Determined for her to stay in familiar, comfortable surroundings, my dad had hired nursing professionals to come in the home part-time, and he was there for her the rest of the time. I came by to help when I could. Now that my father was gone, though, a critical decision had to be made: Should we keep my mother at home or move her to a nursing facility?

With the cost of full-time home care exceeding our budget, my sister living out of town, and me working full-time, my sister and I decided to move our mother into a care facility. It was with great anguish that I accompanied her to the new place and left with a heavy heart and tears in my eyes. For two days, I couldn’t sleep as I thought of the fresh air, blooming flowers, singing birds, and neighborhood activities my mother loved so much and would no longer enjoy. And so, less than 48 hours and two sleepless nights later, I returned to get my mother out of the care facility and bring her back home. I had made the decision to quit my job and move into the family home to become the primary caregiver for my mother.

I decided to take this caregiving journey with my mother all the way to the end, and I vowed to take an active approach, not only tending to her care needs but also enriching her days with the activities and interests that brought her such happiness. That meant getting her outdoors among nature, people, and the bustle of neighborhood activities. Even though her movement and expressions had become quite limited, I knew her heart could still feel love and joy, and this active approach would give her a richer quality of life. After all, she had done so much in giving me a happy, active life as I was growing up.

As I reflected on my idea of the active approach, I thought of the great quote by Lao-tzu, “A journey of a thousand miles begins with a single step.” And so I began the full-time caregiving journey with my mother with a single step that became a long walk. Soon, I was planning each day to include three long walks outdoors—in the morning, the afternoon, and early evening. I carefully scheduled my mother’s feeding and other care activities so there was plenty of time for our walks. I also allowed some time to get her ready for our outings. I would lift her into the wheelchair and then prepare her for the day’s weather—a sweater if it was cool, sunscreen and sunglasses on sunny days, and layers of coats and blankets on cold days. Then, we were out the door and on our way.

Fortunately, we lived a couple of blocks from the village, with its assortment of shops, parks, and services, and the terrain was all flat. Each day, I pushed the wheelchair along, taking my mother into shops, the bakery, the library, or the grocery store. Sometimes, we went to a park or a playground to watch the children.

During these outings with my mother, we were truly in the bustle of neighborhood life. One hot summer day, I pushed her through the sprinkler in front of the municipal building along with some neighborhood children. On several summer nights, I took her to the church lawn to watch the firefly display along with some young families. And on Halloween, I pushed her along the sidewalk with all of the little trick-or-treaters. There was a special joy and energy to these activities that I just knew was stimulating to her.

I continued this active approach of caregiving for three years. I figured with all of our walks we went some 4,000 miles. As the disease progressed, we had to stop occasionally along the way to soothe my mother’s coughing or address other health issues that had started to develop. But we never quit our walks. Sure, I felt tired sometimes with all of this physical activity and the physical demands of at-home care, but I remained devoted to getting her out and about. Along the way, we talked to lots of wonderful people and made many new friends of all ages. On one of our walks, we met a woman who would one day become my wife.

One cold winter night, my mother passed away peacefully at home in her own bed. While I felt a great sadness at her passing, I also felt a tremendous gratitude for the journey we had taken together. Because of those walks, my mother’s later years were rich with stimulating activity, colorful experiences, and new friends, despite having a debilitating disease that kept her from moving or functioning on her own. And because of these walks and the whole caregiving journey, the bond between my mother and me grew deeper. My understanding of love was changed forever. I had given up a job and an independent life, but had gained a profoundly meaningful experience.

~Rick Semple

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