Odyssey of an Incidental Caregiver — Pre-Awakening and an Angel

It was late 2009 when we first reckoned with the notion that our adult son, Gabe, then still shy of thirty years of age, might not be able to live independently. I must admit that with his recent graduation from college, as well as his brother’s, the brief taste of empty nesting was quite agreeable to me. I felt a bit guilty about that then; I still do. It was sufficiently appealing that the dawning realization that Gabe might need to move back home and live with us permanently for assistance was something I resisted. Another notch in this mother’s belt of guilty moments.

If you missed my earlier post, “Confessions of an Incidental Caretaker”, it will help frame the story from this point forward that Gabe was diagnosed with Juvenile Rheumatoid Arthritis in 1988 (a misdiagnosis as we learned over 35 years later). So many parents discover something about their children that is unusual, beyond the norm.

Yes, Gabe had more doctor appointments, with more specialists than his friends. His schedule included occupational and physical therapy, and our routine with him included managing an assortment of medications. Still, other families had challenges of their own, and Gabe’s situation just didn’t strike us as all that extreme in terms of caring for, and raising, a child.

From a caregiving perspective, however, that 1988 diagnosis is notable.

In reality, most of us take on caregiving roles at some point in our lives. Our parents age, our spouse, children, extended family members have an accident or some sort of acute health issue. Caregiving may be a nearly universal experience.

I suppose what we may have been naïve about was the implications of Gabe’s diagnosis. It’s chronic. Additionally, its nature, as we knew it in 1988, was potentially degenerative. Indeed, particularly beginning in 2010, Gabe’s condition entered a decline.

For us, caregiving for this health matter would be a lifelong, increasingly complicated, and demanding role. Frankly, our naivete was under-informed. In Gabe’s situation, the “arthritis” was unforgiving. I know — when is arthritis not unforgiving? But still, it seemed extreme. In 2022, we learned why. More on that in a later post.

I do not want, in any way, to suggest that lifelong caregiving is more noble or holy or saintly than caregiving required for acute matters that will heal. No matter the expected outcome, the duration of caregiving is intense. It is overwhelming. It is stressful.

I can’t imagine that too many people assume the role of caregiver, whether short-term or long-term, with the response of “I ALWAYS wanted to do THIS!!” And that guilt I mentioned: how many who are suddenly called in as incidental caregivers feel at least a twinge of guilt? Because the unanticipated demands interfere with plans that were already in place, and many feel anything from disappointment to resentment about that.

Chronic or short-term, caregiving is an emotional role.

Whether you encounter it as a sprint or as a marathon, you need to be prepared. And, you need to know, it’s almost impossible to be prepared! The reassurance you can take from that is this: you are not alone.

And that phrase, “you are not alone,” is what I heard from perhaps the first “incidental angel” I encountered on this journey. Or possibly an actual angel.

As Gabe was going through the initial diagnostic process in 1988, an unexpected reality was that his lungs had already been damaged. The inflammatory process that was manifesting as observable joint pain had also been active in his lungs, creating scar tissue. He was not even five years old, and his lungs were already damaged. We’d received that word from his Rheumatologist in March of 1988. Following the appointment with his doctor, he had to get lab work done in advance of surgery for a biopsy on his lungs, a procedure that would confirm what x-rays were showing.

I cried quietly as we waited our turn in the lab waiting area. A woman I hadn’t noticed before appeared before me and kindly, compassionately, and reassuringly said to me, “They make this so hard. Just know that you are not alone.”

I lowered my face in what was then an unfamiliar mix of gratitude and sadness and relief and nodded. When I looked up, the woman was gone, and nowhere to be seen.

She may have been some child’s mom. However, I suspect she was an angel. As I would discover, many would accompany us on this odyssey.