photo by: Contributed

Marjorie Kraus, left, sits with her mother, Anne Kraus, and Marjorie's sister, Kate Brilakis, in her hospice bed at the home of Susan Kraus, another of Anne's daughters.

Editor’s note: The following is a first-person account by Lawrence writer and therapist Susan Kraus.

When my mother died, on Aug. 4, she’d been in home hospice for two weeks. Her hospital bed was set up in our family room, next to a large picture window so she could see the trees and birds, and open to the kitchen. A hospice nurse taught us the best ways to roll her body over to change her pads, to raise her bed to make it easier to swallow, to strategically place pillows to prevent bedsores.

The first morning, Mom opened her eyes and asked, “Where am I?” I told her she was in our family room, a room she’d been in a thousand times. She smiled as I washed her face with a warm cloth. “I like it here,” she said. “Good,” I replied. “Because you’re staying here forever.”

I live in Kansas. My two sisters, who live in Pennsylvania and North Carolina, drove out. We did not discuss anxiety about infection (although one sibling disclosed a judicious use of Depends when driving.) We did not discuss quarantines. There was no time for that.

Despite the effects of cumulative transient ischemic attacks, or TIAs, and encroaching dementia, Mom was able to talk, to listen, to laugh. Her eyes took on the guileless innocence of a young girl. She was not in pain, except, maybe, when we had to change her, at which point she would yell, “Susan, Susan, stop it, you’re killing me.” One time, when my sister Kate asked her if there was anything she wanted, she looked around the room, and replied, “Everything I could possibly want is right here.”

Time is suspended in hospice. There were hours of quiet, silently massaging her hands or feet, cajoling her to eat just one bite of a favorite food, watching her grin as she sipped a last cold beer. We cooked old favorites she might not swallow, but she inhaled the aroma and sighed. We moved from watching “I Love Lucy” reruns to dancing to La Bamba (Mom nodding along) to crying when a granddaughter FaceTimed to sing “Tura-Lura-Lura …” one last time to her grammy. We played top hits of the 1940s, reggae, Simon & Garfunkel, Seals & Crofts. We each brought into the mix our own pieces of the past, the arbitrary stuff of memories. When I saw Mom, as she listened to Gregorian chants, start to mouth Latin words she’d memorized as a young girl, I tracked down the priest who had baptized my children decades before but whom I’d not spoken to in years. Father Mike came to the house, without questions, to give Mom what we used to call extreme unction, a final anointing, making small crosses on her forehead with sacred oil, saying blessings for her passage.

photo by: Contributed

Anne Kraus waves from her hospice bed at the Lawrence home of her daughter, Susan Kraus.

When my mother died on that otherwise ordinary Tuesday morning, my husband and I were holding her hands, stroking her head, telling her what a great journey she was starting, how she would soon be walking on a beautiful beach with her beloved (long dead, terminally snappish) Chihuahua. Her breath was shallow, her mouth a rictus. We kept talking until she simply, softly, stopped breathing.

I remember leaning in, cheek to cheek, to listen. Was she taking a break from breathing? Was this really death?

After we called hospice, the nurse came over, took nonexistent vitals and declared Mom dead. We took off her nightgown, washed her body and put her in comfy “traveling clothes.” I combed her hair one last time. After a few hours, the funeral home came and, with subdued, respectful solemnity, took away her body to be cremated.

My mother had the blessing of a good death. (As I would later tell a friend, “I would kill for that good a death.”) And, just as significant, we, her family, had that same blessing. We had time to say goodbye, to revisit the past, to make peace. We had the deep satisfaction of giving her a final, meaningful gift: to die without fear or pain.

It was only possible because Mom did not die from COVID-19.

photo by: Contributed

Anne Kraus is comforted by a family member in her hospice bed at her daughter’s house.

Every death has its own story. But with COVID-19, the stories have an inexorable uniformity: when and how symptoms began; whether they elicited concern or were minimized; how quickly or insidiously the symptoms grabbed hold; when breathing became labored or a fever spiked. There is a point in each story when the victim, or their family, realized that this was very serious, very scary, and called physicians or an ambulance or tried to get to an ER. Some stories end there. Others halt, abruptly, as sliding glass hospital doors cut them off forever. Some make it into an ICU, are placed on a ventilator, unable to talk, tied to machines, untouchable and untouched.

The stories of unexpected survival make the news — images of people being wheeled out, after weeks or more on ventilators, blinking in the sunlight. But survival stories gloss over when the terror hits, exploding like an IED in the brain. They miss what it feels like to drown surrounded by air.

It is the dying more than death that is written into family narratives, etched into the psyche of children, grandchildren, parents, brothers, sisters, aunts, uncles, cousins and friends. And, with COVID-19, it is fear, helplessness, anger, pain and guilt that will inform each family narrative for years.

What is being sidelined in the sheer magnitude of numbers is how COVID-19 kills. Hundreds of thousands of families have been — are being, in this very moment — deprived of their need, their right, to give someone they love deeply a good death. How cheated they feel, blanketed by an unshakable sense of failure. Millions of people are second-guessing (“Why did we have to go to the grocery that night?” “Was it when the kids came over for the birthday supper?”). They will question for years what they might have done differently, as if one incidental tangent in the trajectory might have averted the horrific outcome.

When someone we love has a good death, grief is tempered by gratitude. We can mourn, take solace in memories, not haunted by implacable guilt, by questions with no answers. We can write our own story.

And that is what this is: one small story. A sliver in time that was far more precious because we understood how close our family came to being thrust into a story that would have left us shattered.

As a country, our capacity for grief, or to even comprehend all that we have lost, has been numbed. What will happen when the numbness wears off; when the buried pain and anger surfaces; when we realize how many and how much was lost that could have been saved, that it didn’t have to be this way?

We wake up every day knowing, no matter how much we adhere to medical directives, wearing masks and washing hands, distancing and sanitizing, that a virus, arbitrary and capricious, is hunting for hosts. But more terrifying is that millions of our fellow citizens continue to reject medical science, to doggedly embrace ill-conceived convictions that elevate their “rights” and “liberties” over our “right” to health and even to live.

Here is one undeniable point of agreement of all citizens, Republican or Democrat, red or blue, every ethnicity and every faith. We share this universal desire, for ourselves, for the people we love: We all want a good death.

And there are no good deaths with COVID.

photo by: Contributed

Anne Kraus was able to die at the home of her daughter, with a view of familiar surroundings and surrounded by her family.

— Susan Kraus, of Lawrence, is a therapist, mediator and novelist who has worked for years with families with elder-care issues and grief.