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By Julie McLellan-Mariano, CT

(Page 2 of 4)

Who knew, at “40 something,” I would be working as an unpaid CNA1, CNA2 and RN?  Who knew, in the comfort of my own home, I would learn how to: “cath,” perform manual transfers, use a lift, give injections, administer medication, buy a handicapped accessible van, work with government agencies and perform mandatory procedures?   Who knew I would, again, help my son with ordinary, daily tasks? And drive him?  And cry because he couldn’t pull his blankets up if he got cold at night?

But the checkmate of all ‘Who knew?” questions was the one that resonates universally with all caregivers.  It’s the “Who knew we would master the oh-so-necessary distortion of reality?” The distortion that has to happen in our brains, so our hands can give the necessary care, and help us ignore the fact that our hands are doing these things to, and for, those we love.   And at the core, we’ll never be okay with that.

OK, so maybe my imagination wasn’t so active. 

Three decades have passed since I imagined being DJ Hot Flap Jacks.  Five years have passed since that fall in the bathroom.  And 1,825 days have passed since my family and I became caregivers.  Over those 1,825 days, it never crossed my mind that we would start this “new normal” beaten, bruised and begrudging and, eventually, choose to add compassion, resiliency and wisdom.  Eventually.  I did mention eventually, right?  Seriously, I can’t over emphasize eventually.

Today, my oldest son lives in a different city, on campus, as a full-time student.  His injury doesn’t stop him; he successfully manages his health care, academics, transportation, finances, relationships and obstacles.  His “move” was a rite of passage.  It validated five years of forging ahead and engaging with his life as it was; not as he planned it.  He sought that balance of acceptance and hope; he learned how to make the most of the present. He “passed Go” and collected $200.  He gave himself permission to begin.  Again.  I am proud of, and humbled by, his determined, courageous action. 

I sit “on the other side” of those 1,825 days realizing my caregiving responsibilities have waned.  I can give myself permission to begin.  Again. That means reflecting on the wisdom caregiving has offered.  I wasn’t “ready” to avail myself of any wisdom when my caregiving began. Wisdom was a luxury atop the hierarchy built on lack of sleep, anxiety, daily care and intermittent awareness of your family, job and other people. But, eventually, we can choose to learn a thing or two.


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