By Julie McLellan-Mariano, CT


I confess; as a girl from New Orleans, my active imagination served me well.  It helped create many memorable Mardi Gras seasons for Barbie and Ken.  But it couldn’t create my role as a family caregiver or the wisdom that I would eventually discover. 

As a girl, I could also imagine myself as “DJ Hot Flap Jacks.”  But I couldn’t imagine my son falling down in a bathroom, being unable to roll over, stand up or walk out.

I never imagined that my oldest son’s life would include: congenital stenosis of the spine, c3/c4 quadriplegia, 9 weeks of inpatient hospitalization, months of physical therapy sessions and countless disappointing (i.e., there wasn’t an instantaneous miraculous recovery) rehab sessions.   Or 11 subsequent surgeries, countless UTIs, chronic nerve pain, bed sores and inconsistent home health care.  Or his abrupt, new and unwelcomed reality.  Or the endless parade of questions:  Why him?  Why not me?  Why does anyone have to endure this? Why isn’t there a cure?  HOW DOES HE GET THROUGH THIS?  HOW DO WE HELP HIM?  How do I continue to be Mom to my other children, wife, employee, daughter, sister, sister-in-law and friend?

Sure, DJ Hot Flap Jacks could imagine a perfect playlist for Mondays, but I couldn’t imagine my life defined by so much anger, cognitive and anticipatory grief.  I didn’t know those concepts were hallmarks of my caregiving; honestly, I didn’t even know what those concepts were!  And I certainly didn’t recognize the mourning process playing out right in front of me.   I did know, every day, I was battling the loneliness, misconceptions and finite boundaries of caregiving.  So much for taking the high road!

When I eventually realized “these are the cards I have to play,” more obstacles greeted me.   And they brought their friends:  unemployment, menopause, the 2008 financial crisis, death and check fraud.  But wait, there’s more … who can forget the repetitive challenges to faith, mission and family?

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.

Here are three “nuggets of wisdom” I learned along the way.

Nugget #1:  It is not your fault.  When my son was paralyzed, I instantly took responsibility.   My poor parenting must have caused this; clearly, I was unable to nurture and protect as well as all the other parents since the beginning of time.  And now, my son has to pay the price.  As a first-time mother, did I drop him? Did he fall down stairs?  Let me say this gently and firmly: your loved one’s circumstances are not your fault.  You didn’t say or do (or not say or do) something that caused this. Period. This skewed sense of responsibility is “magical thinking.”  In children, magical thinking leads children to believe that “Mommy died because I wasn’t a good girl.”  Or, “I wasn’t a good student.”  Or,” I wasn’t a good sister to my baby brother.”
My experience has taught me that adults, with more mature and complex cognitive processes, aren’t immune to magical thinking.  Unfortunately, my mid-life thinking was even more magical. Go me!

Objectively, you know you weren’t responsible for the paralysis, cancer, stroke, AIDS or PTSD.    But something inside of you chooses to believe it anyway.  And even defends it with rationalizations; i.e., that’s true for others, but not for me because I (fill –in the blank). It was not your fault.  The temptation to hold onto this magical thinking is real.  We may believe our ability to “hold on” is a reflection of how much we love those we care for; it doesn’t. And do we really need to start judging ourselves as caregivers?   Explore why you are holding onto this magical thinking and learn how to let it go.   It was not your fault.

Nugget #2:  Let go of “OR” and make room for “AND.”  Life, in a caregiver’s head, can be distinctly divided into BC (before caregiving) and AC (after caregiving). BC was “good;” it was romanticized, held much promise and was poised for abundance and success.  AC was “bad;” it was hopeless, dark and radiated loss of control.  This AC thinking relies on thoughts like, “Nothing will ever be right unless ... her cancer is in remission … his speech returns ... he fully recovers from his brain injury or Alzheimer’s …”   This thinking blinds caregivers to the daily courage, mental fortitude, wisdom, spirit and flat out hard work of those we care for.  It is a disservice to what our loved ones must do, choose to do and try to do. And it invites anger and foolishness into our hearts and minds. Life is about “AND,” as in before AND after our caregiving.  Surrendering to, AND surmounting, the inherent sacrifices, demands and challenges.  Crying AND Laughing.  Clarity AND confusion.  Night AND day. What our loved ones used to do AND what they can do now. We will experience adversity, setbacks AND failure.  We will also experience determination, discipline AND victories.  Life is joy AND sorrow; so is caregiving.  Make room for AND.

Nugget #3:  Happiness is always available.   As a caregiver, it never occurred to me that I could choose happiness.  Unfortunately, my happiness was relative; dependent on my son’s ability to get out of bed, make a cup of coffee and list the handicapped van on Craig’s List. Until those things happened, there was no reason for happiness, laughter or whimsy. Not even for a minute of joy that comes with a spontaneous belly laugh, a Nora Ephron passage or a Monty Python movie clip.  Don’t repeat my mistake.  My mentor and my daily philosophy have taught me that absolute happiness is never created or destroyed by external circumstances.   Absolute happiness is readily available and always there for the taking.  Absolute happiness is a choice.  And as caregivers, we can learn to make different choices.  Go on; give yourself permission to experience five minutes of happiness.   Then, really go crazy and create ten minutes of happiness for others.

Wisdom waits for all of us; in time, we discover it.  Eventually.   Seriously, don’t underestimate the power of eventually.

DJ Hot Flap Jacks wouldn’t.

Julie is a Certified Thanatologist, master facilitator and author.  She designed, and facilitates, Mourning Yoga, The Mourning Employment Workshop and The Mourning Milestones Workshop. Julie is the author of a non-denominational, nationally recognized, children’s journal, We Love Each Other: A Healing Journal for Grieving Children, available through Amazon.com.
Julie also contributes as an inspirational speaker; her message focuses on transforming adversity and choosing happiness.  Eventually.


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