You say that there is a difference between family caregivers and professional caregivers. Explain that difference and why it is important to know.
While both groups face many of the same tasks and issues, the professional caregiver receives compensation for their work and they have the opportunity to recover from each day’s work when they go home after a shift. The work for the family caregiver rarely stops, and the responsibility is constant. In many instances, they are on call 24/7 and have little opportunity to attend to their own needs and find the rejuvenation that they need.
Give us a brief history of your journey as a family caregiver.
I married my wife a couple of years following her car accident. Although she had recovered sufficiently to return to college, her injuries and scars were permanent and extensive. Her beauty captured my attention. Her courage grabbed my heart. When I heard her sing, I knew I’d care for this woman for the rest of my life. Three months before our wedding, she endured her 21st operation. Since then, the number of surgeries have mushroomed to at least 78 (that I can count) and an additional three dozen non-surgical procedures. In 1991, following the birth of our first son, Gracie had her right leg amputated, and in 1995, lost her left leg following the arrival of our second son.
Gracie’s journey is one of constantly shifting sand. Each day brings a new set of unexpected challenges. Living with relentless (and often severe) pain from the massive broken bones and soaring surgery count, Gracie’s condition has, at times, experienced plateaus, but has never stabilized. Millions of pharmaceuticals, more than 60 specialists in 12 hospitals, seven medical insurance companies, and massive costs have contributed to the overall challenges in dealing with a medical nightmare of this magnitude. For thirty years, I’ve served as her caregiver, and while my successes have been astonishing, my failures have been epic. Through this journey, I’ve learned hard lessons on how to pace and care for myself in order to preserve the one person that stands between my wife and even further disaster …me.
You state that 90% of marriages with a disabled family member end in divorce. How did you beat the odds?
Gracie & I have overcome with the help of pastors, counselors, family, friends, and our faith. Caregivers don’t deal with any other emotional issue that everyone else doesn’t deal with, we just deal with them relentlessly and often more intensely than most. Dealing with a disability doesn’t cause relationship problems, it magnifies them. The pressure of a disability in a relationship is like “Miracle-Grow” for character defects. What some couples have the luxury of a lifetime to explore and understand, the marriages and families dealing with a disability or chronic condition are hammered every day.
Our marriage has taken a beating over these thirty years, but at the core of this, I see in my wife what I saw the first day I met her, “a soul worth caring for.” When I hang my head in weariness, frustration, guilt, and even shame at my failures, I ask God to give me better eyes and a better heart to care for this extraordinary woman. Through the process, I’ve learned that loving my wife in this matter has made me a better man. During this time, my wife has grown in her capacity to love from a place of vulnerability and disability. There are precious moments that, to others, may not seem like much, but to us, those moments become defining and anchoring. In spite of my failures and shortcomings, I know my wife loves me.
You’re never going to “feel better” about the challenges you face as a caregiver. The goal, however, is not to feel better, it’s to BE better. Once I recognized that Gracie’s challenges were not mine to fix, and I better understood my role as a steward of this extraordinary woman, it eased the pressure on me and allowed me to function with more clarity, compassion, self-control, and love.
Just as the pressures of caregiving can be an amplifier of character problems, it can also bring out the best in us. I’ve come to understand that loving someone without demanding reciprocity is the path towards being a healthier and more joyful person, and provides one with a love that often endures the unimaginable.
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