Sunday, 10 Apr 2016 23:24


To ask is to believe that somewhere there is an answer. ~~ Jonathan H. Sacks, PhD

Fear of dying is an existential experience for everyone. It is a common denominator in the human condition. All of us experience it from time to time. It is further provoked by the dying and loss of the loved one. Watching the dying person raises this fear to a recognizable level. What will I do without my loved one? How will I survive? Am I strong enough to make the change and remain sane? Will I die, too? The fear can take at least several forms: fear of actual physical death, and fear of annihilation of the self (“going crazy”). 1  Just as anger can be frightening, fear can turn into anger and rage. The fear must be managed so that it does not spiral completely out of control – something it threatens to do. Defenses against fear may take many shapes. Among the easiest and most primitive defenses is plain denial: “It won’t happen to me.” 2 As every thinking person knows, internal dialogs – conversations with oneself – are not always rational. “Don’t believe everything you think” is a psychological imperative. That is necessary but far from effortless.

A physician, an anesthesiologist, provides a bold and anguished description of fear. He documented his own feelings when his wife developed breast cancer. His words are poignant, keenly distressed. It is raw fear, the instant wish to deny/repress, the what-if’s, sense of helplessness, questions of self-preservation.

“I opened up the radiology images on the computer, and then I saw it. My wife had breast cancer. At that moment, my world crumbled. I felt trapped. I wanted to run out of the operating room and scream…I wanted it to be a dream, a bad dream. But it wasn’t…I wanted to do something, anything to make things better. But despite my eight years of medical training, and three years of experience in private practice, I could not actively heal my wife. And I felt helpless…I never acknowledged to myself how scared I really was…I repressed all my fears. What might happen if the cancer came back [after successful surgery]? What if it metastasized? How would I raise our girls alone?

I started having trouble sleeping, and I noticed many new physical symptoms – muscle fatigue and weakness, numbness and tingling in my fingers and arms, and palpitations… I became convinced that I had either multiple sclerosis or ALS…

[He eventually found relief by talking about these fears and anxiety in highly focused discussions.] I learned to recognize the symptoms of anxiety, and by simply recognizing its existence, the anxiety no longer controlled me and my [physiological] symptoms subsided.” 3

Talk, introspection, and insight. Those were the healing powers for the caregiver.

This doctor-caregiver’s report is a good reminder of the mind-body connection. Anger is not the only emotion capable of producing alarming physiological symptoms when allowed out of control. Fear can do that, too.

From ancient times to the present day, much has been written about defense mechanisms against fear of dying and death. The writings amount to lessons in self-preservation. Each has his own nuanced ideas and insights. Fear strips away the bearer’s sense of worth and dignity and reduces him to feelings of inferiority, helplessness, and worthlessness. Everyone must find a way to survive in good health. Perhaps he follows the suggestions of others, or he creates his own path, or both. Once again, there is no recipe, no how-to formula, no one-size-fits-all.

The fearful caregiver craves a return to stability, to emotional balance. A new level of equilibrium is sought: adjustment or adaptation. The word “acceptance” could be added here. However, there is no such thing as “acceptance” of death. So don’t worry if you can’t get there from here. The word was poorly chosen. An adjustment may be made to account for death. We may adapt to the concept of a finite lifetime. We may resign ourselves to our fate as humans. However, we do not “accept” the idea of our own death or the death of our loved ones. The idea of acceptance is based on denial. It implies perfect control over, and suppression of, the self-preservation instinct. We have no such perfect control. We do not “accept” death. We do not receive it willingly, favorably, or with approval. Acceptance is then ultimately incapable of relieving death fears. 4

Something emotionally adaptive and stabilizing is gradually achieved. It is a situation in which things once again happen as the caregiver thinks they should, and there are no harmful changes. With effort, it becomes a new reality. That takes time and patience and hard work, grief work. It takes sympathetic support from others, a harmony of feelings, as well as inward focus on calming the anguish and uproar. Of course it can be done. Fear of dying does not go away. It does come back, but under far better control. We do not need to be perfect to be good. Appreciation of life is decidedly heightened by the experience. That is the reward. The controlled comeback is a distinct demonstration of the strength of the bereaved caregiver, his resilience and his ability to grow. Strength and growth.


  1. One respected professor thinks of it – and teaches it – this way: “A distinction is made between fear of the process of dying, and fear of death itself and what may come when one is dead.”

Shelly Kagan, PhD, Open Yale Courses, Phil 176, Lecture 22: “Fear of Death”: Yale University, 2013. —

However, the fear of death of the self is omitted from this suggested framework. The death of the self is a vital concept in any discussion of death fears.

  1. “Repression” may be a more appropriate term than “denial.” For a complete, formal definition and explanation of these complicated mechanisms of defense, see:

Anna Freud, The Ego and the Mechanisms of Defense, New York: International Universities Press, Inc., 1946, pp. 45-57.

  1. Scott Finkelstein, MD, “Being a caregiver has made me a better doctor,” blog:, 17 May, 2013.

  1. For notable further discussion, see: Bruno Bettelheim, PhD, Surviving and Other Essays, New York: Alfred A. Knopf, 1979, pp. 5-6.

Dr. Bettelheim was a child psychologist, Holocaust survivor, genocide scholar, and psychoanalyst.


Image credit: — Dale Chihuly’s glass ceiling

Tags: #fear #eol #hpm #GriefWork #resilience #growth


Rea Ginsberg is a retired director of social work services, hospice coordinator, and adjunct professor of clinical social work. She can be reached on LinkedIn and on Twitter @rginsberg2.

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2 thoughts on “FEAR AND THE BEREAVED CAREGIVER by Rea L. Ginsberg, LCSW-C, ACSW, BCD

  1. Elaine Mansfield

    Thank you for this important and wise piece, Rea. I’ll share it on my FB page tomorrow. I’m spending lots of time with my brother as he struggles with cancer. I don’t feel fear as I did with my husband’s death, maybe because my brother’s death won’t turn my life upside down and throw me into another world. Still, he is my only sibling and the last living member of my childhood family. I want to be with him as much as possible now and support his family after his death, but I don’t have the pressure of making decisions or trying to figure out the right path. That’s up to him and his wife and children. I can simply listen to everyone’s concerns, ask questions, and sit in silence with him. We all hope I will be with him for his death and perhaps fear will show up then.

    1. Rea

      As always, Elaine, thank you for commenting and for all your encouragement! And thank you, too, for sharing the post on FB. — Difficult to lose your brother. You make such wise distinctions between the loss of Vic and the anticipatory loss of your brother. I am sorry that you must travel that path of sorrow once again. For many reasons, one death brings back to mind all the other important deaths we have experienced. And I guess this is another way that we grow — altho it does hurt to do so. Insight – self-awareness – is so important in the process. You certainly have it!


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