An Essay: The Impact of an Ill Relative on the Family Dynamic
Colorado summer kissed the morning sky as a storm boiled in the cauldron heart of the mountains. For someone I've always been reluctant to love was unwittingly lying at death's door, and the toll of the word "caregiver" loomed overhead. Beyond the world of my wildest imagination lied this request that would restructure my character. Being a caregiver can lead to emotional turbulence due to sacrifice, financial burden, and health care system navigation.
In our youth Colorado was a novelty that afforded escape from the Midwestern tundra we inherited. We abandoned our well-paying employers and familial support to venture into the unknown. The dark skies and inevitable moods that followed were alleviated by the promise of three hundred and sixty days of sun. So, we packed our bags and would never return. Ben, the brother of my lover, would welcome us into the mouth of madness that year as we settled for a small condo in the Rocky Mountains. Impulsive and haphazard planning would isolate us from the resources of necessity. With a great deal of pride we severed our safety nets.
After perusing small town Main Street during our second week in Grand County, urgency of priority boldly interrupted our morning coffee as strange symptoms surfaced at the breakfast table. Ben was transported to a local clinic where routine tests followed with the assumption of diabetes as it appeared in his family history. His mother, nervous and convicted, informed me she was making the eighteen hour commute from her home to ours and would arrive by morning. The following day Ben was seen by a specialist, admitted to the hospital, transferred to intensive care where his heart nearly gave out, and was subsequently placed on dialysis for kidney failure. After a gulp of whiskey and two hours down the mountain, I slept in the glacial waiting halls of ICU with an infant on my hip and no understanding to speak of.
The Centers for Disease Control and Prevention report one in 10 American adults, more than 20 million, have some level of chronic kidney disease. Ben's case was unique in that he was tragically young and virtually a medical mystery. Blood work, a bone marrow biopsy, and thirty rounds of doctors followed his case all with zero answers inside the first ten days. Ben remained physically stabilized, while his psychological well-being went into orbit, and we felt the strain creep in.
Due to our carefully selected isolation, receiving quality health care posed a challenge. The hospital in our county, for example, had one dialysis machine in its inventory and not a single nurse on payroll that was trained to utilize it. Medical practice was replaced by simply not knowing, dietary changes were implemented, otherwise livable income was replaced by laughable disability dollars, and weekend camping trips were otherwise occupied by arguing health-insurance loop-holes and pharmacy pit-falls.
As a caregiver, I was unable to find effective support in my community beside our deliberate drive to leave our families behind. Thirty boxes of supplies and dialysis solution would be delivered to my two-bedroom condo in the mountains each month. The five stages of grief had plundered into my home. Within the first two years Ben would accumulate six figures of debt that would send me in tearful rages away from my P.O Box with the ridiculous notion that it was even feasible to pay them. The atmosphere of mental health declined considerably for us all and Ben, understandably so, struggled with the temptation of suicide. In this moment, Margaret Dulaney?s words in fact ring true:
?There must be some truth to the notion that a healthy mind will produce a healthy body, but it can be a cruel, heartless notion for those who are not healing if they are made to feel responsible not only for their inability to heal but for the disease itself.?
We have managed to escape the claws of a falsified dream despite meandering sanity and relationship casualty. Our perspective remains forever changed having trudged waist deep through the health care system in honor of those closest to us. We have buried our dead, and graciously strive to rebuild from financial and emotional collapse in the heart of the American south. More pervasively perhaps, we are no longer the adolescent offspring who without provocation, dare to venture from the nest.