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February 2, 2018

Kindness at the Margins for Caregivers – Experts by Experience

By Renata Louwers

Renata LouwersWith age, most of us realize the value of a solid night’s sleep, good nutrition, and exercise. We come to understand that this self-care greatly impacts how we feel, function, and perceive events around us.

This is exponentially true for family caregivers of a person facing a terminal illness. Life as a caregiver to a spouse with stage IV cancer can feel like living a sleep-deprived, fast-food, no-exercise day, every day for months and sometimes years.

It is in this context that kindness at the margins – especially from doctors and nurses – can make an even greater difference than it normally would.

If you are a healthcare professional, please assume that caregivers to the seriously ill are sleep deprived, eating on the run, and unable to exercise. In addition, they are sad, deeply sad, and scared. They see life through a dark lens with a burden on their shoulders. What you do – whether you are extra kind or terse – is magnified from their perspective. Your actions, your attitude, your willingness to make their day a little easier – even if that adds a little hassle to yours – can impact their well-being.

When my first husband, Ahmad Khoshroo, had stage IV bladder cancer, we spent many days in waiting rooms, infusion labs, and in the emergency room – eleven months of exhausting interaction with the healthcare system. Two separate experiences in emergency rooms reminded me of the impact hospital employees can have.

In one instance, we arrived by ambulance and there were no beds available. My husband was on a stretcher in a hallway, and there was no place for me to sit. I was fatigued, but no one offered me help. Instead of empathy, I was scolded when I sat against the wall in the hallway.

Conversely, in another emergency room visit, we arrived late at night with the worry that he had developed a blood clot in his leg. A nurse could immediately see how tired I was. He brought me a pillow and said, “There’s a waiting room down the hall that’s empty this late. You can take a nap there and I’ll come get you when the doctor comes to talk to your husband.”

It was as if I’d been given a free upgrade to first class. It was a small thing that cost the hospital nothing, but I couldn’t have felt more appreciative. I appreciated the opportunity to rest and that someone recognized what I needed and offered it to me. I didn’t have to ask or demand; I didn’t have to do anything.

I understand that in an emergency room the top priority is to handle emergencies, not to comfort caregivers. But it takes discreet actions like kindness, helpfulness, empathy – things within the control of every person – to scale up the humanity of care.

And scaling up, even slightly, can have a big positive impact on caregivers.

Experts by Experience is a collaboration between Inspire and Mayo Clinic Connect, online support communities for patients and caregivers. By sharing their stories, patients and caregivers awaken, inform and strengthen a patient’s capacity to partner in their care, and help people working in health care to learn and discover opportunities for quality improvement. The series showcases the value of shared experiences and features contributors from around the globe.

About the author: Renata K. Louwers, patient advocate and writer, is the editor and co-founder, with her husband, Tim Louwers, of the literary journal and nonprofit organization, Months To Years. It explores death, dying, and mortality through creative nonfiction, poetry, and art. She was the caregiver to her first husband, Ahmad Khoshroo, during his 11-month treatment for stage IV bladder cancer. Twitter: @RenataLouwers and @MonthsToYears.

 

Tags: caregivers, Community Development, experts by experience, Patient Involvement, Physician Involvement

Liked by Jamie Olson, Connect Moderator, Colleen Young, Connect Director

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