Here But Not Here ­— Learning to Live With Ambiguous Loss

By James Campbell

![](/content/images/2017/08/Untitled-17.jpg) *Photos: Barry Hyman*

Left: From left: Lou-Ellen Barkan, Dr. Pauline Boss, Susan V. Kayser, Jed A. Levine, Alice Shure, Bonnie Pfeifer Evans, Karin Marder
Right: Jed A. Levine moderates the discussion between author and family therapist Dr. Pauline Boss and family caregiver Karin Marder.

How do we mourn the loss of someone who has not yet died? What pitfalls and opportunities for growth are there in caring for someone who is there but not there? CaringKind addressed these difficult questions head on in a wide-ranging discussion at the 5th annual Charles Evans Lecture on the Art and Science of Caregiving, held on April 24, 2017 at the Times Center in New York City.

Following a short introduction from Bonnie Pfeifer Evans and Alice Shure of the Charles Evans Foundation, CaringKind President and CEO, Lou-Ellen Barkan, painted an evocative picture of caring for her father as he succumbed to Alzheimer’s. Like a ghost, he “turned slowly… from a fully-colored human, to a grey, translucent outline, and finally to a wisp of smoke before disappearing entirely,” only to sometimes reappear as if he had not become ill. This ambiguity, and the pain that can flow from it is a natural, if often unspoken, part of caregiving.

Understanding how caregivers can balance their own lives while providing quality care sat at the core of the evening’s discussion. In his introductory comments, moderator and CaringKind Executive Vice President, Jed Levine, laid out the ramifications ­— physical, psychological, and spiritual — of caregiving, as exemplified in what he called “the dichotomy of absence but presence at the same time.”

The panelists presented a wealth of knowledge drawn from years of academic and clinical expertise and first-hand caregiving experience. Dr. Pauline Boss is Professor Emeritus at the University of Minnesota and the principal theorist in the study of ambiguous loss. Her work addresses the families of those missing physically due to disasters such as the 9/11 attacks and psychologically when the body is present but the mind is not. Karin Marder entered the world of caregiving in 2003 when her husband Jason was diagnosed with Alzheimer’s. They soon became involved in CaringKind, attending workshops and developing a community of fellow caregivers.

Psychologically ambiguous loss is a special sort of loss, one without the rituals and closure we are accustomed to when confronting death. Dr. Boss explained that this ambiguity comes at a cost for caregivers, who die at a rate 66% higher than others in the same age group. “Caregiving,” she said, “is dangerous to your health.”

Ms. Marder concurred with the concept of ambiguous loss, and the stressors that come with it. “You’re constantly grieving, constantly mourning the loss of what was, you’re mourning the loss of what is and certainly mourning what is… down the road.” This mourning brings with it a deep loneliness, which Ms. Marder addresses by surrounding herself with positive friends and the people in her CaringKind support group. She also continues to find solace in her relationship with Jason, finding moments, where despite everything, they “can just sit and laugh together.”

As the evening drew to a close, one question remained unanswered: “Where is hope in the Alzheimer’s experience for caregivers?” “The hope is,” said Dr. Boss, “that if you get through, your resilience will make you shine... and that’s the kind of people the world needs.”

James Campbell is a freelance writer based in New York City. He holds an MA in International Affairs from The New School and has written for various academic, non-profit and human rights organizations.

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