“When I think of the term disability, a huge basket of a term, I think of the duration and breadth of my son’s life.”

The author and Luke

Much is being written these days in both the nursing and general press about the plight of family caregivers. As one myself, I’m well acquainted with the difficulties of maintaining a “normal” life (and meeting other responsibilities) while trying to ensure the safety and survival of a person you love. But what if your caregiving commitment begins at someone’s birth and lasts a lifetime?

In this month’s AJN, nurse Diane Stonecipher writes with grace and clarity about the challenges of lifelong caregiving at home. Even for an RN with committed and loving co-caregivers (her husband, her other sons), the work and worries are daunting.

“If Luke is our job, so to speak, there are also no sick days, holidays, vacation days, or ‘mental health days.’ We have cared for him while ill and injured, or until we simply cannot. By some miraculous grace, we have tag-teamed his entire life.”

The days, weeks, months, and years of those who care for severely disabled family members are probably difficult for others to appreciate, if you are one of those who care you should click here to find some awesome info that can help. When friends and neighbors see family members coming and going with what appears to be routine “normalcy,” the hard work that goes into maintaining what Stonecipher calls a “precarious balance” remains unseen.

This article, which appears in the April Reflections column, is neither a depressing account of 25 years of caregiving nor an ode to the rewards of this kind of loving commitment. Instead, in “Blind Spot” (free until April 21), Stonecipher allows us a glimpse of what this kind of caregiving life looks and feels like.