THE CAREGIVERS: An Extraordinary Journey of Love
by Victor Good
It was a beautiful February day. No snow, but chilly and bright. Driving over the Connecticut River into Vermont, I thought about the many times I had crossed that bridge during the ten years Julie and I had lived in New Hampshire. One memory in particular made me smile.
I was distracted. I had all “the kids” (that is, my parents and my wife’s mother) in the van and was focused on getting to our destination. I stopped the vehicle on the railroad tracks due to traffic backed up from a traffic light—not a safe situation. So, after checking my mirrors, I put the full-size passenger van in reverse and slowly inched it backward. Boom! A crunch echoed through the van. A small car had been following so close behind the van that I never even saw it. Nevertheless, the collision was my fault. After a check to ensure no damage was done and everyone in both vehicles was okay, we were on our way again.
The “kids” ten years before it all started Martha (Mom), Ma Schwan (Mother in-law) and Leo (Dad)
I turned toward Brattleboro Hospital, where Julie had a checkup scheduled. It wasn’t until I turned into the driveway that I realized I hadn’t been there since my parents had passed away, well over a year earlier. I dropped Julie off at the door and found a parking spot. I couldn’t go in with her to wait, due to Covid-19 restrictions, so I tuned the radio to an oldies rock station and sat in the car watching the entrance and listening. “Oldies” to me was 1950s-era music, but somehow it was now 1980s-era and I was the oldie. It’s strange the way life just goes on.
A heavyset woman was walking down the sidewalk with a cane in her right hand, and a younger man (perhaps her son) walked close by on her left. They came to a bench, and she struggled to sit down. She shuffled around and tried backing into the bench, her son holding her hand loosely. She finally dropped the last few inches into the seat and the son went inside the nearby door. I sat there watching the seemingly confused woman sitting there by herself, looking around the same the way my mother had during her illness. Tears came to my eyes as I reflected on the difficult path that my family had recently traveled. A nurse came out the door pushing a wheelchair with the son close behind. She parked the wheelchair in front of the woman seated on the bench. It appeared the nurse was giving her instruction to get in the wheelchair. The woman struggled to get up, her son put out his hand to help, and pulled her by her hand in a way I had learned long ago was putting them both in danger. The nurse stood by, holding onto the wheelchair, doing nothing to assist. The woman finally maneuvered her way around and backed into the wheelchair. As she plopped into the seat, her back struck the back of the wheelchair and her legs snapped up.
Tears streamed down my cheeks. I thought of all that my wife Julie and I had learned as we struggled to care for my parents over the course of five years. It had been “baptism by fire,” as we had no instruction book for how to properly care for ailing parents. We searched for resources and found a scattering of information and the occasional medical professional who would share a secret or two on caregiving. As the incident I’d just witnessed with the wheelchair showed, the moving of a disabled person has a learning curve. The lessons learned early on include how to support someone and how to avoid injuring them as well as yourself. A patient can actually be lowered into the seat instead of “plopping,” them, which has risks.
Local caregiver support groups offered members opportunities to share experiences and ideas. Julie and I were never able to attend, since we didn’t have a person to watch over my parents on the evenings the group met.
Our experiences were unique, just as we all are. I heard over and over again, from doctors, researchers, and various medical professionals, a statement I grew to hate, especially as it referred to Alzheimer’s: “It’s different for everyone.” Basically, they were saying, “We can’t tell you a damned thing or even give you much advice because each patient is different.” I get what they were saying, but there are basic ways you can prepare. I viewed their words as a total cop out, and it motivated me to write this story.
The writing of this story is part of my therapy to help me deal with the loss of my parents as well as the guilt I feel for the learning curve that all caregivers have to deal with as they struggle to care for a loved one. In raising a child, no one playbook fits all situations. Dealing with elderly loved ones, from late in life to end of life care, is no different.
You discover who your real friends are. Some friends and relatives may reveal an ugly side. My wife and I were loved, condemned, ostracized, praised, hated, admired, despised, pitied, and shunned by various members of society. Most importantly, though, we were loved and appreciated by my parents. One thing we never saw coming was the division that formed between family and friends as we did our best and sacrificed the most to care for our parents.
I hope you find this story of our experience helpful.
Mom and Dad – Leo & Martha Good enjoying their beloved San Felipe, Mexico