Confessions of an Incidental Caregiver

Although our oldest child was diagnosed with Juvenile Rheumatoid Arthritis in 1988 (a misdiagnosis as we learned over 35 years later), I never really considered myself to be a “caregiver”. For the sake of his privacy, our son will be known as Gabe as I share our story. Indeed, early in his life, Gabe had an unusual number of doctor appointments with a range of specialists that few children of his age experience. Yes, medication, physical therapy and occupational therapy became part of our family routine, but the idea of being a “caregiver” beyond the normal call of parental duties did not take root until Gabe was nearly thirty years old.

The true “caregiver” role came to be around 2010, and it was a bit of a shock. Despite the ever-present management of his JRA/RA/TBD, he’d been able to live independently, and attended college in Chicago, three hundred miles from home. He had thrived on his own and graduated from college with a double major in 2008. Gabe followed the normal after-college routine, settling into a good job in Chicago with an energy company.

In 2009, he developed a persistent and somewhat resistant infection that required IV antibiotic treatment. Living on his own, he was not able to manage it, so came home for a brief period. He had been back in Chicago for a few months, enjoying young adult professional life, when early in 2010, a virus he caught dehydrated him so badly that he developed acute kidney failure. He needed to come home for care. We thought that this again would be a temporary arrangement, but his health continued to develop surprises. His ability to live independently declined, and he needed to move back home permanently for what at the time was more on the order of light daily assistance rather than “caregiving.”

When I confess as an “incidental” caregiver, it is because, again, I’d never really considered this role. Not at all. In fact, when Gabe came home in 2009 for help with the IV antibiotic treatment, I’m ashamed to say I resisted that option. My reaction followed the line of an eager empty-nester, ready for a carefree future with both children successfully through college and employed as securely as anyone can ever be. I’d had no notion, no thought no predisposition to the idea of caregiving, although truth be told, I’d been “trained” for it: my mother had supported her mother and her older sister through health problems as they aged.

This by no means is to accuse any parent of being “bad” if they resist or deny the needs of an adult child whose health is complicated. I only say this about myself in retrospect: I reacted as a bad mother, when Gabe asked to come home, telling him I could assist as much as I could from afar, three hundred miles away, but that he was an adult with job responsibilities, and he needed to stay put.

Gabe reacted from a point of truth. How could I be so cold, so uncaring, so selfish as to not help my own son? While Gabe did not throw religion at me, it did come to me quickly. A “what would Jesus do” moment, to be trite, hit me. Although we are by no means wealthy, the blessings we do have are humbling. Jesus cared for complete strangers. Again, this is about our decisions, not judgment of others, but how could we morally decline to help our son? If this is not what God, Love and Family are about what is?

The story continues in full in future posts about this “incidental” caregiver story. Along with the intense worry, fear and concern a caregiver experiences, as well as the highs of everyday miracles that really do appear, I’ll also share the story of how Gabe’s condition was misdiagnosed and the implications of it.

I’m not a healthcare professional. I possess no formal training or certifications as a caregiver, but I’m confident there are other caregivers out there who have assumed their roles unexpectedly, without anticipation, called to action incidentally. This is a role that deserves support, compassion, and space to breathe. I hope in my posts to provide some of that space.

Please join the conversation as you desire. Simply keep it respectful and clean.