Joy and sorrow: New book delves into intimate world of end-of-life caregiving

Last modified: Wednesday, January 29, 2014

A nurse for more than 40 years, Maureen Sienkiewicz knew all too well the memory loss her husband, Peter, had been experiencing was going to get worse.

His dementia diagnosis eventually led him to need 24-hour care at a local rehabilitation facility.

A few months ago, when the 67-year-old Northampton resident went to meet him there for a meal, she experienced her first real heartbreaking sign of his disease.

“He looked at me and said ‘I’m waiting for my wife.’ It was really hard and it kind of gave me an eye-opener of what was to come,” she said. “I just had to acknowledge I couldn’t care for him, and as a nurse that’s hard to admit.”

Sienkiewicz, like a number of other local residents caring for loved ones, turned to a caregiver support group for comfort and hope at Cooley Dickinson Hospital. Those experiences have been turned into a book by Northampton writer Nell Lake. She spent two years listening to area residents inside and outside of a caregiver support group talk about the joys and sorrows of caring for a loved one who was elderly or sick.

“The Caregivers: A Support Group’s Stories of Slow Loss, Courage and Love,” will be released Feb. 11 by Scribner. While all the information in the book is true, Lake changed the names of the subjects and the hospital.

The book, written in a narrative style, contains “intimate scenes, and highly developed characters, and with interwoven stories that arc across the entire book” and tells the stories of six main characters and four others caring for loved ones with dementia and other chronic illnesses, she said.

A book reading and signing will be held Feb. 12 at 7 p.m. at the Odyssey Bookshop in South Hadley.

Lake became interested in pursuing this book for a number of reasons, including that the larger topic of family caregiving is an important and nearly universal concern these days, she said in a recent interview. As she sat through the group sessions, Lake said she was moved by the caregivers’ own particular challenges and their stories.

“And I was moved by the larger human theme of illness, decline and death — something we are all going to face,” Lake said. “And along with that the idea that we might collectively and individually embrace the last stages of life with more courage or wisdom.”

Revealing hidden challenges

It was late 2009 when Lake sat next to Bruce Bradley-Gilbert, lead psychiatric counselor for the Behavioral Health Inpatient Program at Cooley Dickinson Hospital, at a birthday party for a mutual friend. During a conversation, Bradley-Gilbert mentioned that he led a caregiver support group, and Lake shared with him that as a writer and journalist, she was interested in health, medicine and mental health issues. Bradley-Gilbert suggested she sit in on some of the sessions.

After receiving permission from participants in the caregiver support group, Lake began attending the sessions in January 2010. Initially, she was an observer, taking notes and listening to their concerns, heartaches and challenges. After deciding to write a book about their experiences, Lake started meeting the caregivers outside of the sessions to gather more information.

“I wanted to learn more about them and their experiences so eventually I was going to their homes, to nursing homes and tagging along on doctor’s appointments,” said Lake.

Bradley-Gilbert said he believes that the caregivers will benefit from Lake sharing their stories.

In particular, readers will learn about the isolation and loneliness that is common to caregivers, he said.

“Caregivers can feel misunderstood by family members or feel underappreciated. They were eager to get some appreciation and acknowledgement, which overall ended up being a very healthy thing for the group,” he said.

Having worked for so many years as a nurse with patients and their families, Sienkiewicz realized there was real lack of understanding as to what family members go through.

“I think Nell’s book will open people’s eyes that families need to be included and need to be understood because in a way we take on the illness, it becomes part of our lives,” she said.

In Lake’s book, “Carolyn” is Renee Denenfeld, 63, of Northampton, who along with her two daughters, cared for her mother, Jedidah Shashai, 89, for many years before she went into The Overlook at Northampton due to dementia.

Denenfeld agreed to be a part of the book because she felt Lake would write a “really important book that was going to help people and bring awareness to this situation.”

Denenfeld found that caring for an elderly person was like caring for an infant but with different longterm results.

“Their needs are the same but when you care for a child usually you have the understanding and the hope that as you invest time they are going to become more capable and more independent, and the need for your services will be diminished over time,” she said. “But when you’re caring for an adult loved one you’re in a situation where the loss is constant. And for most of us caregivers we know that the end of this process is the complete loss, the death of our loved one.”

Lake says she believes writing the book about these intimate experiences provided value to both her and the caregivers.

“During the process, I think there was an amazing benefit to my simply witnessing their experiences and their lives. And I think they benefited from having someone interested in their experiences,” she said. “I like to think of it as compassionate witnessing. It’s not just sitting there trying to come to conclusions and judgments. It’s just trying to understand.”

Judith Kelliher is a freelance writer.


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