When faced with a chronic disease, every person reacts differently. Becoming “the patient” is never as simple as lying down and gracefully submitting to whatever treatment is recommended. Entering the world of ongoing illness, we drag along a conglomeration of baggage—upbringing, past experience, relationships, culture, religion, and fears.
Checking the Obits
My late husband, Jerry, had the habit of grabbing the newspaper on his way downstairs for his morning shower. He immediately flipped to the death notices, chuckling as he periodically voiced some variation of the phrase, “Well, I checked the obits. My name isn’t there, so I guess I’d better get ready for work.”
Over the years, I have found myself following the same routine. As I get older, I scan the page for the names of former co-workers, ex-neighbors, or dearly remembered patients. Every so often, though, a total stranger’s obituary causes me to stop abruptly and wonder what forces shaped his or her life and attitudes.
A Matriarch and “My Husband’s Nephrologist”
Several months ago, one such announcement described a revered matriarch, a woman obviously devoted to her large family and much loved by a host of friends. The notice also described her last years as not only filled with joyful times spent with family but also consumed with dread of her “all too frequent dialysis treatments.” The obituary continued: “Thank God, they don’t have those in heaven.” I was stunned.
Perhaps those words struck me so forcefully because they came on the heels of a conversation I had with Walid Al Sheikha, MD (affectionately known as Dr. Al), my husband’s nephrologist. Over the years, I had tried to put into words Jerry’s attitude about dialysis, using such terms as “upbeat,” “positive,” and “hopeful.” None of those sounded quite right. Dr. Al had the perfect description when he commented: “I got the feeling that Jerry thought of dialysis as ‘just an annoyance,’ the way the rest of us think about getting a cold. He just lived his life, and dialysis was pretty incidental.”
Different Ways to Think of Dialysis
So what enables one person to think of dialysis with dread and another treat it as an annoyance? Is the difference only in the “baggage” we bring to illness? Is it possible to change a fundamental attitude?
Given a choice, Jerry could have thought of thousands of things he would rather do than dialyze—golf, dining out, dancing, fishing, camping with our son, maybe even working. Dialysis was at the bottom of his “things I love to do” list, right down there with grand opera or clothes shopping.
But, since dialysis was not optional, we chose home treatments, convinced it would keep our lives humming along normally. For 25 years, it did!
Jerry also made a conscious and deliberate choice to use his illness and treatment time as an opportunity. In 1980, long before “patient empowerment” became a popular buzz phrase, my husband lived it.
Jerry and I were college students in the 1960s. We questioned everything and everyone and prided ourselves on calling the shots, doing everything “our way.” Before making a decision, we ferreted out all the pertinent information and debated endlessly.
Should a patient do any less? Knowledge is power. Knowledge helps ease fears. It allows a patient to enter a partnership with care providers and become an integral part of the healthcare team. Jerry often commented: “Too bad it’s me, but this medical stuff is really fascinating.”
Home dialysis treatment modalities offer patients a chance to plan their own care, including treatment days and times, fitting dialysis into life rather than life revolving around dialysis. Even though Jerry and I were quite social, we cherished our dialysis evenings as a time to slow down and reconnect with each other and our son.
Focus on Living and Accepting Support
It would have been so easy for Jerry to curl up and feel sorry for himself. It would have been easy to use chronic disease as a cop-out for doing less than he was able. Instead, he kept working full-time and doing the things he enjoyed. Numerous studies reinforce the fact that active, hopeful patients are healthier patients.
There are people with chronic illness who try to tough it out, to “just deal with it.” While intellectually that may seem admirable, in reality, we all need each other. There is no replacement for support from family and friends and from those who really understand our plight. Accepting that support is never a sign a weakness.
Dwelling on illness is counterproductive. Only when we reach outside ourselves are we truly fulfilled. Work, even if part time. Help family members. Volunteer.
While working full-time, my husband continued in his role as treasurer of our local Alzheimer’s Association and a board member of United Way. He was always in the cheering sections at every event in which our son was involved. In short, he refused to withdraw from life.
Among our friends, I have the reputation of being a bit of a Martha Stewart, fussing over every minute detail of each event. When Jerry died, I began a frantic attempt to plan one last perfect party for him. Not content to tack a few pictures on a cork board at the funeral home, I designed an elaborate display, a tribute to a life well lived.
In addition to wedding and family pictures, I included his golf clubs and trophies, poker chips, childhood 4H memorabilia, even the tattered red Teddy bear he won at the county fair. I instructed the funeral director to play a special CD in the background, one I had created with all the songs that were meaningful to Jerry and to us as a couple.
Shortly before the visitation began, my mother strolled around the finished display and quickly remarked: “Something is missing. There’s nothing representing dialysis. That was a big part of your lives.” I hurriedly remedied the error by adding a dialyzer and tubing which I artfully wound through a section of the memorabilia.
Only with the hindsight of nearly three years can I finally put that mental lapse into perspective. I like to think I forgot the dialysis paraphernalia because, for Jerry, kidney disease never defined who he was.
Dialysis was only an annoyance, a blip on life’s screen, a thrice-weekly ritual which allowed Jerry to live a wonderfully normal life.
About the Author
Denise Eilers, RN, BSN, is a healthcare professional whose husband, Jerry, was on home hemodialysis from 1980 until his death in October 2004. She teaches nursing fundamentals at United Township Area Career Center in East Moline, IL. Denise resides in Davenport, IA, where she volunteers with Genesis VNA Hospice. Denise has written two previous articles about her life with Jerry for KidneyTimes (click on EasyLink Access numbers 108 and 200).
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