Reading Between the Lines: Why Caregiving Stories Matter

We knew that Bruce Kramer’s appearance was uncertain when we began planning a book reading with Kramer and MPR host and author Cathy Wurzer. The two had collaborated on “We Know How This Ends – Living while Dying,” a book about facing mortality and growing through loss and grief. Kramer was living with amyotrophic lateral sclerosis, commonly known as ALS or Lou Gehrig’s disease.

Still, when Kramer died just days short of the book launch and a few weeks before the event we cosponsored with Common Good Books, an entire community seemed to stand still with disbelief. Old and new friends gathered to acknowledge the honesty with which Kramer and his wife, Ev Emerson, lived while knowing that death was inevitable.

I sent Wurzer a note expressing my condolences. I confirmed our commitment to the event at Common Good Books and mentioned how much I looked forward to meeting her. Wurzer responded with a surprise: Kramer’s wife, Ev Emerson, might be joining us at the book event. My immediate thought was, “Wow, how brave!” 

The result of Emerson’s and Wurzer’s courage to speak even as they grieved was a remarkable conversation. We had no idea that caregiving would end up being the overarching theme to permeate the event.  And yet, it made perfect sense.

A Mutual Understanding

Over 60 people came to Common Good Books for the event. A few were there to see the author and MPR celebrity; others we discovered shared a mutual understanding of caregiving. They showed up with their own stories of caring for someone with a terminal illness; some current, and some past. 

Wurzer played clips of her on-air interviews with Kramer. She acknowledged the still-raw memories of losing a friend and colleague. She also recalled personal experiences as a long distance caregiver for her dad with Alzheimer’s. Emerson shared Kramer’s story through her perspective and demonstrated a grace beyond even her own expectation.  She shared their commitment to living while Kramer was dying. 

The conversation that day was less about ALS, disease or dying and more about life transitions and the realities of providing care. Life is enriched when one recognizes the value of living while dying and when we understand that while care is being given it is also being received.  

Value in Sharing Stories

“We Know How This Ends” is the latest book by Minnesota authors that share the vulnerability of a person with a life-threatening illness and the voices of those providing care. Barbara Roy shared her story of caring for her husband with Alzheimer’s in “Under the Bridge Backwards.” Susan Allen Toth describes her journey caring for her husband with Parkinson’s Disease in “No Saints Around Here – A Caregiver’s Days."

These authors show us that life doesn’t stop with a diagnosis. Life changes, no doubt about that, but there is an opportunity and a call to action to live fully while living and also while dying. There is so much we can learn in life, and in death, lessons not listed on any brochure available after a diagnosis.  Lessons learned through love, and pain, heartache and uncertainty. 

Those caregiving need support and resources, and need to know they are not alone. There is also value in sharing their stories, as difficult as that is. The community that showed up for the “We Know How This Ends” event and other caregiving book events shows the need for individuals to engage, discuss, listen and figure this out together. These conversations are critical to our communities, our families and our own lives. Will you join us in the discussion?

​Join the Conversation

Copies of “Under the Bridge Backwards,” “No Saints Around Here,” and “We Know How This Ends – Living while Dying” are available to be checked out of Wilder’s Caregiving Resource room at our Community Center for Aging.  Our gratitude to Barbara Roy, Susan Allen Toth, Cathy Wurzer, Ev Emerson and Bruce Kramer – courageous individuals from our community sharing their extraordinary stories of life, loss and care. 

Maureen Kenney is the Caregiver Services Program Manager at Wilder's Community Services for Aging. Kenney leads a team supporting informal caregivers of older adults through resource referral, education, support and consultation.