A chronicle of caring as life’s journey ends


The images are touching, profoundly moving, and strike a sad chord. Stretched out for anyone to see is a chronicle of moments. Not just any moments—these show the story of caring for a father, grandfather, and husband as he disappears into dementia.

These personal photographs by a daughter watching her father slip away do not repel. Instead, they beckon the viewer into the intimacy of family during moments most don’t talk about: family members watching and comforting someone they love while he or she suffers in the last moments before death.

It’s a common occurrence—millions of families trudge daily to nursing homes, to hospital beds, to a bedroom where a loved one lies dying. There, they often welcome a new member of their family—a caregiver.

When photographer Kathryn Szoka’s father was diagnosed with dementia and began his final journey, she did what came naturally. She spent lots of time with her dad, enjoying his company. She and her family struggled through times when emotions ricocheted around nondescript nursing home walls and times of tedium while he lay dozing.

And she did one other thing. The Sag Harbor resident raised her camera to document the journey of her father and her family as they stood by him and cared for him.

“This is how I see the world—through the lens of a camera,” Ms. Szoka said. “It wasn’t an unusual thing for my family. I had been photographing them for years … I wanted to document my father’s journey, as an artist and as a tribute to him. He was an amateur photographer and it was because of him that I became a photographer. I think he would have been pleased with the photographs.”

On Saturday, images of her and her family’s journey will be put on view at Canio’s Books in Sag Harbor in an exhibition running through April 30. The photography show is part of the presentation, “The Art of Caring: Writers and Photographers Illuminate Care-Giving.”

The event features a slide show of Ms. Szoka’s images entwined with readings by Maryann Calendrille of excerpts from “An Uncertain Inheritance: Writers on Caring for Family,” edited by Nell Casey. The book is a collection of essays by writers who cared for relatives battling cancer, brain tumors, and Alzheimer’s and chronicles of being caretakers for themselves when they were stricken.

Ms. Calendrille will also read passages from “The Florist’s Daughter” by Patricia Hampl. The memoir recounts the writer’s experience of watching her mother die from cancer and revisits her Midwestern childhood to reveal the struggle of ordinary people to better themselves and society.

Saturday’s event is designed to bring to the forefront artists who have transformed the journey of caring for a family member during debilitating illnesses into art. By using the emotional experience as fodder for art, these artists transform their struggles and allow others to connect with the art and the challenges.

“Artists are challenged to interpret their experience,” Ms. Szoka said. “It’s their role to interpret the world. I’m a photographer. The camera is my language.”

Connecting with and embracing the tumultuous emotions and revisiting them in art can help make some sense out of chaos, and also help an artist come to terms with a loved one’s last moments. This is true for the artist and those who view or experience their art.

Already, people have been reacting to the program set for Saturday, Ms. Szoka said. Many have already ?expressed appreciation for the presentation of a topic that touches most people but is rarely talked about beyond a few sentences.

Ms. Szoka has experienced the death of both her parents. Her father, Charles Szoka, died in 1997 after battling dementia for less than a year. Her mother, Kit (Kathryn) died in 2003. Exploring the range of emotions and the different kinds of experience is the focus of the visual essay, “Crooked Knee.” The title comes from a poignant moment of connection between Ms. Szoka and her father.

To try to figure out how to understand her father’s changing communication skills, Ms. Szoka went to a presentation on Alzheimer’s—a related but different disease. The speaker explained that words spoken by someone suffering from the disease might not relate to experience or customary definitions in a linear fashion. Soon after, Ms. Szoka was with her father when he uttered the phrase “crooked knees.”

She asked her father if he felt frustrated because his life was out of kilter and the former athlete was now unable to stand or walk. He nodded.

“He seemed pleased that I understood,” Ms. Szoka said. “It’s these small moments and enjoying whatever connections can happen. The camera allowed me to be ever-present. It was a natural progression and he didn’t feel uncomfortable because it was me.”

“Crooked Knee” was previously exhibited in 1999 at The Center Gallery in Manhattan. Some 30 photographs capture moments of laughter between family members, quiet moments of waiting, of playing games in the nursing home’s common room, and physical and emotional struggles. The feeling of love and closeness is present in the essay and in each photograph.

“The Art of Caring: Writers and Photographers Illuminate Care-Giving” will be held on Saturday at 6 p.m. at Canio’s Books, 290 Main Street, Sag Harbor. For information, visit www.caniosbooks.com or call 725-4926.

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