What is Anticipatory Grief?

People living with terminal illness face grief and loss long before death occurs

Looking up through the fall trees in anticipatory griefWhen Dr. Elizabeth Kubler Ross released her seminal book, “On Death and Dying” in 1969, she based her writings on the experiences of people who were facing certain death. Through a series of interviews and conversations with terminally ill children and adults, she opened a window into what it’s like to live with a terminal illness and developed her now-famous theory about  the “five stages of grief.”

Today, experts view Kubler-Ross’ groundbreaking work somewhat less enthusiastically than they did in the 1970s and 1980s. In particular, they have begun to cast doubt on the idea that the stages of grief are linear, or that they can be generalized to include all forms of grief. Nevertheless, most healthcare professionals are still in agreement that people living with a terminal illness do experience what’s known as anticipatory grief.

Robert is a 73-year old man who was diagnosed with prostate cancer 15 years ago. He has undergone numerous treatments for his illness, including hormone therapy, surgery, radiation and chemotherapy. Just a few weeks ago, he learned that his cancer is once again progressing. His doctor says there is nothing more he can do.

“So I guess I’m dying,” Robert says in his typical matter-of-fact way. “And, to be honest, I’m not too worried about that. I’m tired. I’m ready to go. The last few years have been absolute hell.”

But then his eyes fill with tears. “What bothers me, though,” he says, openly crying now, “What bothers me is leaving all this — my family, my life. I wanted to see my granddaughter get married and be there when my grandson graduates from law school. I wanted to meet my great-grandchildren…I wanted to live another 20 years!!  

I ask Robert if he’s angry.A path through the woods in fall leads to thinking about anticipatory grief

“No, not really,” he says. “I was. I was really, really mad for a long time. Not only did I have cancer, but the treatment made me impotent and weepy and weak as a little girl. I felt like I wasn’t even a man anymore. I didn’t want to go out. I didn’t want to see my friends…I couldn’t even talk to my wife about how I felt. “

“Now I’m too sick to care, I suppose. I’ve accepted my fate. But I’m still really sad about leaving my family. I can’t imagine doing that. But I guess I don’t have a choice.”

Like most people living with a terminal illness, Robert is experiencing a dizzying array of conflicting emotions, all of which are part of the normal human reaction to loss. Robert is grieving, not only because he is dying, but because he has already lost so much of himself — his physical strength, many of his friendships, his sexual relationship with his wife and his image of himself as a “man.” He is also losing many of the dreams that have sustained him throughout his cancer journey. He will not live to see his granddaughter get married or attend his grandson’s graduation. And that has left him feeling not just sad, but isolated from the people he loves as they plan for a future that won’t include him. All of these feelings are part of what’s called anticipatory grief. 

Anticipatory grief affects the people who love the person who is dying, too. Watching someone they love suffer and fade away one day at a time is its own form of loss.

“I lost the husband I once had a long time ago,” says Robert’s wife, Andrea. “This has been going on for 15 years, and the man I was married to isn’t the man lying in that bed today,” she says sadly. “It breaks my heart to see him like this. More than anything I want his pain to end. But then that will mean he’s gone forever. And I can’t even fathom how much that’s going to hurt.”

Closeup of autumn leaves symbolize anticipatory grief and approaching death

For Robert and Andrea, sharing their grief helped them to rebuild some bonds that had been strained by the years of fighting his disease. And they were able to share a level of intimacy that had been lost for a while, they both said.

“We’re talking about old times,” Andrea says. “We’re remembering when life was good and all the things that made us happy back then. Life was never easy. But we had a lot of fun.” She reaches out and grabs Robert’s hand. “And we’re still together. Through it all we never gave up on each other,” she says, smiling at her husband of 52 years. “That’s a whole lot more than a lot of people can say.”

When you open your heart to your grief, you open your heart to love.

Grief is like the ocean. It comes of waves, ebbing and flowing. Sometimes the water is calm. And sometimes it is overwhelming. All you can do is learn to swim. ~ Vicki Harrison

About Kathleen

Each month Kathleen Clohessy, R.N., offers a new perspective on living with a terminal illness. Kathleen comes to SevenPonds with 25 years experience as a registered nurse caring for families and children facing life-threatening illness. She began her career in the Pediatric Intensive Care Unit at Nassau County Medical Center in New York. After relocating to California, she spent 15 years as an R.N. and Assistant Nurse Manager at the Pediatric Oncology & Bone Marrow Transplant Unit at Lucille Salter Packard Children’s Hospital at Stanford. She uses her knowledge and expertise to enlighten our readers about the challenges associated with chronic illness and its effects on family relationships.

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