February, 2016

In her landmark book On Death and Dying, Elizabeth Kübler-Ross described five stages of grief: denial, anger, bargaining, depression, and acceptance.   This system has become the most widely accepted way to describe and cope with the grieving process. I believe these stages present a very useful way to look at grief, and I used them throughout my book.

Today, as I am writing this, Molly is still alive. She still breathes; her heart still beats; she can still walk around; she enjoys the tastes of sweet things on her tongue and the feel of soft things she touches. Therefore, I do not speak from the perspective of one whose loved one has died.

I am, however, fully experienced in what is called “anticipatory grief.” Kübler-Ross defined this emotional state as follows: “anticipatory grief occurs when someone we love—or we ourselves—have a terminal illness. Anticipatory grief is the ‘beginning of the end’ in our minds. We now operate in two worlds, the safe world that we are used to and the unsafe world in which a loved one might die. We feel that sadness . . . we think of the five stages of death occurring for the dying person, but many times loved ones go through them ahead of the death also. This is especially true in long, drawn-out illnesses.”

I have, therefore, been in the stages of anticipatory grief ever since Molly’s diagnosis. I think and feel and write using the concepts of denial, anger, bargaining, depression, and acceptance.

Most recently, I have been reconsidering my attitude towards the fifth stage of acceptance. I have often said and written of grieving Molly’s disease that I have not yet reached the stage of acceptance. That turns out to be both true and not true.

I have certainly come out of denial, felt my anger and sadness, learned many lessons about life and death. Grown emotionally, psychologically, and spiritually during and through the process of grieving.

Now, I recognize that I have in many ways reached acceptance. When I write and speak about lessons learned that is part of acceptance. When I find Molly’s infantile behavior as both fascinating and heartbreaking, that is also acceptance.   Another part of acceptance is taking the long view: I had twenty-five years with Molly when she was healthy and fully able to do everything.

I had a common misconception about acceptance. I thought it meant that I was finally okay with Molly’s illness and decline. Kübler-Ross, on the other hand, never meant it that way: “Most people do not ever feel okay or all right about the loss of a loved one. This stage is about accepting the reality that our loved one is physically gone and recognizing that this new reality is the permanent reality. We will never like this reality or make it okay, but eventually we accept it. We learn to live with it” [italics mine]. According to that interpretation, I can say, “Yes, I have faced the reality of Molly’s Alzheimer’s.” I have even learned to live with it.

So, what does acceptance look like in my grief journey so far? I have spent many days over the last few years observing Molly’s actions. I have and become less interested in keeping her safe and content and more interested in what she does spontaneously. Molly has proven to be remarkably curious. From my perspective her curiosity stems in large part from her memory loss. Since she cannot remember an experience, Molly is always in the process of exploring new sensations. She will feel the texture of a napkin as though it is the first time she has touched such a fabric.   She will explore my hand and touch my skin and my fingernails as though she is learning about the body for the first time. She will try a handle to see if it will open the door. She doesn’t remember that the doors are usually locked: each handle is a new opportunity. This is what I am talking about when I say that her actions are both heartbreaking and fascinating.

Putting myself in observing mode helps me cope with the deep sadness of what Molly has lost. To me it is tragic that she cannot read her favorite poems any more, that she cannot remember her grandchildren’s names, that she doesn’t remember the words to the songs her father taught her as a little girl. Molly certainly does not remember what she used to do and enjoy. I seriously doubt that she ever misses reading a book.

To Molly, as I see her now, what she is experiencing right now in front of her is what is important. Accepting that reality is powerful.