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Lessons I Learned as an Amateur Caregiver

photo courtesy of vagcel.ru

From the St. Paul Pioneer Press Opinion Page, Nov. 10, 2019

As I stood at the podium last month to address a roomful of nurses, memories came flooding back from a time when I, too, was a caregiver, though I didn’t have a lick of medical training.

In 2005, my daughter underwent a bone marrow transplant at the University of Minnesota. As she lay in bed, a shadow of her previously healthy self, skilled professionals tended to her medical needs around the clock.

Their care enabled her dad and me to focus on Julia’s emotional well-being, as one day blurred into the next.

Then word came that Julia was ready to be discharged.

This was the news we’d prayed for.

And yet, I found myself both joyful and terrified.

When discharge papers were signed, the care of a medically and emotionally fragile 11-year-old shifted.

In the months that followed, I was often weary, worried, and overwhelmed. But we endured, Julia with her brother’s bone marrow restoring her health, I with a grateful heart.

Our experience bred deep respect for nurses and other medical professionals who make life better for patients and families like mine.

After all these years, the opportunity to speak to nurses about lessons I learned as our “family medical crisis manager” was a gift. I appreciated the chance to express gratitude for the often-thankless work they do every day.

Some people feel a pull to become professional caregivers; others fall into the role when people they care about become people they care for.

When Julia became ill, I’d already stepped away from my career as a lawyer to manage my son’s medical and developmental needs after his autism diagnosis. So, I did not have to balance career and caregiving duties.

But not all caregivers are in my position. Decades ago, women were more apt to stay at home than to enter the workplace. It was easier to take on caregiving responsibilities when necessary.

These days, more women work outside the home than ever before. As roles shift, and as we live longer, a large percentage of caregivers — women and men — are juggling personal, professional, and caregiving duties simultaneously, often without a roadmap.

Unlike nurses, caregivers typically don’t have a beginning and end to their shifts. Whether a loved one has physical or emotional battle wounds, a disability, an eating disorder, an addiction or Alzheimer’s, the sun doesn’t set on a caregiver’s responsibility until reinforcements step in or the patient no longer requires care.

As I reflect back on how I made it through many months of intense caregiving, certain lessons percolate to the surface.

I’ll begin with attitude.

In a crisis, “woe is me” is a contagious and caustic mindset. Bitterness has no utility.

It’s far more useful to focus on how and who than on why.

How will I get through this situation? Who can I look to for support?

As to support, I found strength in connection, both virtually and personally.

CaringBridge was launched just miles from our home not long before Julia’s transplant. Since then, more than 700,000 CaringBridge sites have been established to connect people from around the world. CaringBridge enables users to share updates and provide support for all sorts of crises.

Initially established to keep Julia’s spirits strong, our CaringBridge site became my lifeline.

While she slept, I shared updates about her condition, solicited jokes to lift her waning spirits, and received prayers for all the children fighting for their lives in the isolation unit.

CaringBridge is a brilliant example of how technology can be used to usher us through the most trying of experiences. Now featuring resources for caregivers, it is a great tool for patients who are navigating a medical crisis and those who are caring for them.

Technology is useful. So are boots on the ground.

I learned one of my most important lessons when a friend offered her help and I hesitated. So often people mouth the words but don’t mean them.

Did she mean it?

When I looked into her eyes, I discerned the truth and resisted the inclination to decline.

When we struggle, those who care about us feel helpless. Doing even the smallest thing for another can make a difference. When we put shoulder to shoulder and work together toward a common goal, we feel useful.

The lesson: It’s as much a gift to accept an offer of help as to extend one.

I embraced that lesson and accepted many offers of help during Julia’s hospitalization and recovery at home.

Friends brought meals. They walked our dog. They offered open hearts and strong shoulders to our weary and fearful family.

It’s easy to lose ourselves in caregiving. It’s easy to become depleted. What is one to do?

Emotional and spiritual support is vital to maintaining a mindset of “we can do this.” So is a bit of selfishness.

Difficult as it may sound, we need to honor ourselves. We need something that will fill us up when we struggle to muster the energy to change a diaper, cook a meal, or visit the doctor one more time.

Caregivers — and Veterans — as we honor you, I offer one final lesson, also shared with the nurses.

Find one thing that fills you up. You may not be able to spend much time on it, but guard it zealously. Whether it is knitting, reading, running, walking with a friend or hitting golf balls…make sure to make time for your one thing.

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If you enjoyed this piece and would like to read more of Caryn’s work, you can sign up to receive her columns by email. You can also purchase a signed copy of her award-winning memoir, “Bitter or Better: Grappling With Life on the Op-Ed Page,” here. If you’re looking for an inspirational speaker, reach out!