Loss of Future Story and Anticipatory Grief

In seminary I took many pastoral care classes. One of the things that has really stuck with me is about grief. We not only grieve what was, but we also grieve what we hoped would be, our future story. Ending a relationship often requires grieving all that you had imagined your future together would be like. Losing a parent or loved one involves grieving all the events and holidays that they will not be able to celebrate with you. For many, the loss of that future story takes a lot of time and energy during the grieving process. As we realize new times that we won’t be together, like when we are at an event that we wish our loved one was with us.

I’m experiencing a new kind of grief: anticipatory grief and ambiguous loss. I am grieving the loss of someone who is still with us. Though she is not actively in the dying process, she has recently been diagnosed with dementia. I am grieving that she will no longer be the same. Ambiguous loss is grief about losing the way things used to be, and in this case, how she used to be.

One of the ways I deal is by research. I took a class on dementia, and it is brain failure, not unlike my heart failure. That helped me understand it better. By the end, she could lose up to 70%, or 2/3 of her brain. As time goes by, we will lose more and more of “her.” I learned about brain changes and physical changes. She will lose her ability to see well, first her peripheral vision, than it will be like she is looking through binoculars, and then seeing out of only one eye at a time. She is losing her executive functions at a faster rate than normal aging, and her ability to keep herself safe and see logical consequences to actions.

The teacher of my class, Krisie Barron, LSW, said dementia was like going on vacation and never getting to come home. And that home can be a place, or feeling safe, or even looking for themselves. Check out her website https://www.embracingjourneys.com/ . She shared 4 truths about dementia:

1. Two parts of the brain are dying.
2. It is chronic, and there is no cure.
3. It is progressive.
4. It is terminal.

Before her diagnosis, I had suspected dementia. Learning more about symptoms has made me realize that she may have had dementia for awhile now. Some days she is great. Some days many symptoms are present. She always knows who I am. We have left nothing unsaid, and yet there is so much more I want to know about her life. I want to hear stories again and again, and I want to write them all down. I want to spend time with her, and I feel a new sense of urgency. I want things to be like they were a few years ago, yet I know they never will be the same again.

The theme of the last year for me has been grief. The pandemic caused all of us to grieve many things. Maybe you are still grieving what we lost. Maybe you are grieving a future story of what you hoped would be. Maybe you are grieving in anticipation of how things are not yet normal and what won’t yet happen. Maybe you are grieving ambiguous losses of the ways things used to be. Be gentle with yourself. Be kind to each other. We do not know where anyone is in their grief journey at any given moment.