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
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
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.
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.
#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!
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
#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
#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
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.
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