A Caregiver’s Silver Lining

I was zipping along on the Kennedy Expressway recently, headed on to an important meeting in the city, and just getting into my "mom groove" with The Silver Linings Playbook soundtrack, when flashing lights off to the side of the road snared my attention. "Accident ahead," the neon sign blasted.

Suddenly traffic came to a grinding halt. As I slammed on the breaks, Stevie Wonder's "My Cherie Amour" trailed off in a stream of "la, la, la's," along with my plans for the morning. Miles ahead, a multi-car crash had shut down traffic and was about to hold myself and fellow drivers in expressway hostage mode.

That's when I had my own light bulb experience.

During the last six years, I’ve been gripping the steering wheel of my life, trying to forge ahead with my frail and aging parents in the passenger seat tethered to the oxygen tank of life at 80-plus:  two canes, one wheelchair (for long walks and hospital hallways), one artificial hip, hearing aids, a long list of medical conditions, and a list of medicines even longer, which require different colored pill box organizers and an alarm on an iPhone.

The daily journey to keep my parents safe and “independent,” is a lot like heading out on the expressway and hoping the ride will be “accident ahead” free. It has required a yin and yang of parenting skills that now borders on hovering and helicoptering. One slice of cheese cake for my diabetic, dairy product allergic mom can translate into a doctor’s appointment or ER. On the day I opened her fridge in search of a bottled water and found it filled with a stash of not so skinny lattes, it wasn’t a surprise when I gave her the same stink eye I employ when I discover empty beer cans in the shoe rack of my college coed's closet. She offered: “Sorry Mary, I know I’m not supposed to.”

Then, there was the six months of twice-a-day treks to outpatient intravenous therapies to try to fight (didn’t work) my father’s nasty case of MRSA; an open-heart surgery; regular treks to the emergency room and multiple hospital stays. Last fall my mom spent a month of pure medical test exploratory hell before being transferred to Loyola University Medical Center and a second month-long stint revealed the mystery: untreatable and terminal cancer of the duodenum.

Three years ago, I stood at my father’s bedside, clasping his hand, balancing his straw and reading to him from the books that were his lifeline during his final journey through hospice. In the several years since, Sundays I deliver a week’s worth of meals to my mom (whose heart made it through surgery, but not the loss of her lifelong partner, my dad.)  I always arrive to find her sitting in her lift chair reading, her hair perfectly coiffed, necklace dangling and cane and coat propped at the front door for our speedy getaway to places she and my father “Pa,” once shared. She’s content, but the shadow of my dad lingers in a place deep inside of me that makes me ache for the amputating loss she must feel.

I’m a not so closeted co-dependent sort and so I often feel called on to fill the hole via road trips, hoisting my mother  into the passenger seat and letting her ride shotgun on treks to the Irish Heritage Center, the movie theater and our new favorite eatery – sitting outside on the patio Bally Doyle’s in Downer’s Grove. I’ve become her wing man and chauffeur to her life-long best friend, Eleanor’s annual “Christmas in January” luncheon, delighted to take a seat of honor at the table with the dwindling crowd of “the club ladies.” And, then the co-tribute maker when Eleanor died last summer.  I used to don my muff and party clothes and accompany my mom to meet the gals for mid-week lunches at the Walnut Room when I was just a tot.  When I show up armed with “a” forbidden dessert (OK, I sometimes cave), and a new novel from Barnes & Noble, her face lights up. She caresses the book in her hands, then places it on the pile stacked up next to her rosary and 30-year-old notebook of scratched out and scribbled in again phone numbers.

Riding in the back seat of my life car are my three children, ages 20 - 28 and the unexpected, but life-changing arrival two years ago of Rylee, the light of my life and the reason for the new obsession my kids say I have in joking that Rylee can proclaim: “my Nana does triathlons."  During the pregnancy and for months afterward, my son and his girlfriend lived in my house as I tried to serve up the foundation that would give birth to college diplomas for both of them and a promising future for the trio.  (Add pink car seat, a supply of fish crackers, and doll to my backseat motif.)

The side car of my life is filled with attempts to reinvent a career of been there/tried that, as I juggle several part-time writing gigs to try to piece together the former full-time journalist’s salary and the mortgage payment and college tuition. Not to mention the frills – a futon and semester’s supply of Mac-and-Cheese and hair extensions to keep up with the college roommate Jones’.

Like the 40 million women who care for a relative, I’m not seeking a nomination for sainthood. Many days these multi-tasking roles can get pretty messy and require either a great sense of humor, or a counselor on speed dial. I try to look good at it every day, but sometimes I’m not a pretty sight.

But, there’s also a silver lining. Like being stranded on an expressway, I’ve found myself in the middle of this situation I never could have predicted. But in helping care for my parents, my kids, my granddaughter, a dog and random neighbors friends and a group of teens at an inner city high school where I volunteer, I feel I’ve helped my parents especially find as Stevie Wonder suggests, moments of life “as lovely as a summer’s day.” (Even if they happen in between calls that show up on my caller ID from Adventist Hinsdale Hospital from an ER nurse who offers a heads up that the patient from “the accident ahead,” my mom is waiting on a stretcher.

The gift, the silver lining, comes from knowing that despite the detours on my life journey, I’ve chosen the route that requires an accommodating outlook and guarantees I will show up – good or bad – to care for the well-being of the friends and family I love, no matter what the roadblocks.  And, that when I do, sometimes it will feel like time is standing still, like we’re stuck and going nowhere. But it is during the moments when I'm holding my mom's hand as she waits in the dark and institutional basement outside the GI lab, that I know I am right where I am supposed to be.  Someday when she joins my father and they look down from a little distant cloud, I can go on singing, knowing I did everything I could to help them when they needed me most. La, la, la, la, la... la.

What’s your caregiving silver lining?


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