By Stuart B. Smith.
Ten years ago, my wife of 32 years would be diagnosed with two serious and incurable medical conditions. Our lives would be changed forever. My wife, Ellen, would become partially disabled following any one of her 24 surgeries. Her level of disability following many of these surgeries would create a degree of physical need requiring my full-time attention in the role of caregiver which I, like many others, would find myself thrust into with little preparation. During many of her recuperations, Ellen would find herself confined to a wheelchair. At times, my wife was dependent on me for assistance with the most basic human functions. In addition to mastering the mechanics of direct care, I would learn a great deal about mutual trust. I would also experience an intense level of intimacy which came with the mutual, emotional dependency which is, I believe, inherent in most caregiver-patient relationships when caring for a loved one. Over the past decade, the role of caregiver has proven to be an emotional rollercoaster marked at times, by anxiety, despair, fear and at times the pure joy of sharing one’s feelings, hopes, and dreams even when they may be pipedreams.
I have now reached the age of 71. I am fortunate in that I have avoided injury or any serious medical condition which might permanently limit my capacity as a caregiver. With this said, I am not the person I was ten years ago.
Approximately 10 months ago, Ellen underwent her second neck fusion. The results have proven incredibly positive. My wife is driving for the first time in ten years. She can now walk a moderate distance with little discomfort. Ellen requires much less assistance from me and the quality of our lives has improved dramatically. We hope that these changes will prove to be long-standing, but we remain aware of the possibility of relapse resulting from either of Ellen’s medical issues.
When Ellen was first diagnosed, we were completely unprepared to deal with the debilitating consequences of her medical conditions. Today, the situation is different. Despite the reality of my being older and with somewhat diminished capacity to deal with the rigors of caregiving, we now have the advantage of the opportunity to plan for potential unforeseen issues which might arise. We know that I will be impacted by the natural and inevitable process of aging. If we were to find comfort and security as we enter our 70’ and 80’s, we needed to create a plan for our future which would provide both of us with a sense of physical security and emotional comfort. We realized that living on a small farm with all the physical demands upon me and the lack of immediate alternative adult support, would simply not provide the necessary elements to meet our future needs both physical and emotional.
Together, Ellen and I made the heartrending decision to sell our small farm where we had resided for 35 years and raised our 4 sons. We needed to find a living situation which required less physical labor on my part and provided the necessary support for my wife in possible emergency situations. It was at this point that one of our four sons, who had recently moved, allowed us to build a small home on his property. We were delighted and overwhelmed by the generosity of his offer. This offer was made with the full knowledge of the seriousness of Ellen’s condition. We could now look forward to moving to a situation which would meet the essential elements of the plan we had devised, not to mention the joy of living close to loved ones.
I can now look to the future with the confidence that we have a plan in place which while not providing the luxury of absolute security it does consider the possible physical limitations which I will inevitably face as I age. As a self-aware caregiver committed to the long-term support of a loved one realistic planning is critical and necessary.
Stuart B. Smith
Director of Caregivers, U.S. Pain Foundation
Advocacy Director for Medicinal Marijuana, U.S. Pain Foundation
Featured image: Stuart and Ellen