Caregiving and the Power of Anticipatory Grief

I give workshops about anticipatory grief and creating a happy life after loss. Last evening I gave caregiving workshop about compassion fatigue. My workshops always include participation activities. Last evening I asked attendees to think of some happy events in their lives. I passed out sticky notes and asked people to jot down a happy experience.

The room became quiet. Minutes later, I asked if anyone was willing to share what they had written. One man, who had been quiet until then, said he would “My wife has Alzheimer’s and doesn’t speak any more or show emotion,” he shared. “Yesterday she smiled.” Then he smiled and everyone in the room smiled with him.

Family caregivers can become so involved in daily tasks that they overlook anticipatory grief. Indeed, they may not even know they are experiencing it. Anticipatory grief—a feeling of loss before a death or dreaded event occurs—is really powerful, more powerful than many people realize.

You may be going through anticipatory grief now. If you are a family caregiver you face a triple challenge—caring for your loved one, caring for yourself, and coping with anticipatory grief. What makes anticipatory grief so powerful?

First, your thoughts jump around from past, to present, to future. You may do this again and again. It’s enough to make you think you’re going crazy.

With anticipatory grief every day is a day of uncompleted loss. This continues until your loved one, friend, or pet dies.

Unfortunately, you don’t know when the end will come and anticipatory grief can wear you down. Friends may wonder why you are grieving if nobody has died.

To your dismay, suspense and fear become life “companions.” As hard as you try, you can’t seem to outrun these feelings. A black cloud follows you wherever you go.

At a time when life is confusing, anticipatory grief can become complex. According to grief Therese A. Rando, PhD, author of How to Go On Living When Someone You Love Dies, anticipatory grief imposes limits on your life.

The shock factor makes anticipatory grief powerful. My mother had dementia. I was her caregiver for nine years. I was shocked when anticipatory grief “found me.” I was also shocked when I realized anticipatory grief was always increasing.

Lack of an endpoint makes anticipatory grief powerful. Family caregivers may think they know when a loved one is going to die, but they don’t really know. Waiting for the end to come chips away at you, little by little, day by day.

But the most unique thing about anticipatory grief is that it is sorrow mixed with hope. You hope health experts have made the wrong diagnosis. You hope someone will invent a new drug or surgical procedure that will save your loved one.

As a bereavement community, I think we need to be on alert for anticipatory grief. If you are a family caregiver you really need to be alert. This may sound like bad news, but it’s really good news. Awareness of anticipatory grief is the first step in learning to cope with it.