Anticipatory grief – to grieve before the end

Dr Nelia Drenth helps us navigate the hard path of anticipatory grief.

The diagnosis of a life-limiting illness is enough to make most of us shiver with fear and anxiety due to the unknown that is awaiting us. As the illness progresses, we may experience times of hopefulness and hopelessness. 

Anticipatory grief can be experienced by both the person at the end of life and his or her loved ones. I believe that the grief we experience in the terminal phase of life, also known as anticipatory grief, helps us to prepare for the end of life psychologically, emotionally, and spiritually. 

Defining anticipatory grief

Anticipatory grief is grieving before the loss has occurred. It’s grieving in anticipation of the sword hanging above your head. While grief is a reaction to separation, anticipatory grief is a reaction to the threat of death rather than death itself. It’s a matter of holding on and letting go. It’s an attempt to be with the dying person in the present, grieving the person as they were, and planning for a life beyond the loss of the loved one.

Anticipatory grief doesn’t only include the loss through death but can include other losses, such as the loss of a companion and financial security, and the changing of roles in your system. 

Grief before death understandably sometimes presents with unexpected emotions. It can be compared to an isolated world accompanied by the sadness of saying goodbye, the uncertainty of how and when all will end, the fear of pain and discomfort, unfinished business and the things that haven’t been said. 

But the time before the death can also lead to personal growth.

Tuesdays with Morrie

The memoir Tuesdays with Morrie tells the story of Morrie, a college professor, who was diagnosed with amyotrophic lateral sclerosis. His question after he heard the news from the neurologist was: “Shouldn’t the world stop? Don’t they know what has happened to me?” 

This is where Morrie’s anticipatory grief started. The journey of saying goodbye to everybody and everything in his life. It’s also the journey of his family and friends. The difference is that Morrie is saying goodbye to everyone and everything that he holds dear. The family and friends are saying goodbye to one person and the role he had played in their lives. 

Morrie asked himself another question: “Do I wither up and disappear, or do I make the most of my time left?” He decided to make the most of his time left.

It’s OK to die

So, how do you make the most of the time left when such devastating news has been shared? Monica Murphy-Williams pleads in her book, It’s OK to die, for us to prepare ourselves for when the time comes. She advocates “to fight for a good death…in the arms of the ones who love you, with your pain controlled, with your fears addressed, with your goodbyes all said.”

The time before death and amidst anticipatory grief is hard and messy. It’s riddled with sadness, fear, shame, and guilt. Difficult as it is, it’s necessary that we talk about what matters most to alleviate the anxiety and to sort out unfinished business. 

It’s the time to share our wishes of where we want to die. It’s the time to speak about who we want at our bedside and what music should be played. 

If we haven’t done so yet, it’s also the time to share healthcare decisions, such as who will be your proxy if you’re unable to communicate? Do you want to be resuscitated? Do you want artificial feeding and be placed on a ventilator?

To help us with these discussions Monica Murphy-Williams borrowed from the work of Dr Ira Byock, The four things that matter most, and added two more things:

• “I’m sorry” or “Please forgive me” (Byock)
• “I forgive you” (Byock)
• “Thank you” (Byock)
• “I love you” (Byock)
• “It’s OK to die” (Murphy-Williams)
• “Goodbye” (Murphy-Williams)

True expression of these six sentiments allows us to release emotional energies that encourage us to face the challenges of the pending death.

What is the legacy that you’re leaving behind? 

This is the time to reminisce about the good times. What would you want people to remember about you? What are the stories that people would tell about you? What are the lessons that you’d wish they would take from your life? In other words, what is the legacy that you’re leaving behind? 

Living with death’s shadow

Anticipatory grief is normal, and we can learn from Professor Morrie’s philosophies about living with death’s shadow:

• Accept what you can do and what you aren’t able to do.
• Accept the past as past, without denying it or discarding it.
• Learn to forgive yourself and to forgive others.
• Don’t assume that it’s too late to get involved.

In the end, anticipatory grief prepares us to let go with dignity that is vested in our attitudes, behaviour, compassion, and dialogue.

If you’re struggling with grief, please visit qualilifecare.org

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