Anticipatory Grief and Ambiguous Loss

Anticipatory grief can be defined as the grieving of someone who is still alive and is common among caregivers of those with degenerative or terminal illnesses.

Ambiguous loss can be a response to psychological absence as in a loved one who is physically present but not be emotionally or mentally available.

These resources can help you recognize the signs of anticipatory grief and ambiguous loss and learn measures to manage the emotions involved.

PD Caregiver Anticipatory Grief Resources | General Anticipatory Grief Resources | Expert-Level Resources

PD Caregiver Anticipatory Grief Resources

"Ambiguous Loss"

By the Parkinson Society British Columbia, November 28, 2019

In this 1-hour webinar clinical counselor, Trevor Josephson, shares examples from real life (with permission from the subjects), and provides recommendations to Parkinson's care partners for how to cope with and manage feelings of anticipatory loss and anticipatory grief.

Read our summary of the webinar for the Stanford PD Community Blog.

"Caregiving, Grieving and Loss"

Published by Parkinson Canada

This 3-page fact sheet describes grief and loss as it relates to caregiving and provides suggestions for coping.

"Parkinson's Caregiver Burnout: Handling Grief, Anxiety, and Depression"

Published by Invigorate PT

Explains how anticipatory grief can affect a person diagnosed with PD, as well as family and friends close to the person. Explores the feelings associated with this grief, as well as how those feelings can contribute to caregiver burnout.

General Anticipatory Grief Resources

"5 Steps for Dealing with Anticipatory Grief"

Published by Visiting Nurse Service of New York

Anticipatory grief might be the hardest part of caregiving someone with Alzheimer’s disease, cancer, and other terminal illnesses. This site provides some ways caregivers can work through their feelings.

"Ambiguous and Anticipatory Grief"

Published by WellMed Caregiver Teleconnection, April 11, 2022

In this 1-hour teleconference Dementia Care Specialist and Certified Grief Counseling Specialist, Hollie Glover, explains what anticipatory and ambiguous grief are and how they relate to being diagnosed with and caregiving for a degenerative disorder.  Hollie went into detail about how to recognize whether you are suffering from anticipatory or ambiguous grief and even more detail about how to cope.

"Caregiver Grief, Part 1 - How to Recognize Anticipatory Grief"

Published by Morningside Ministries Learn

This post provides a closer look at grieving for a loved while they are still here, with explanations and tips for caregivers.

"Grief and Loss"

Published by the Family Caregiver Alliance

This article addresses the grief experienced when caring for someone with a chronic illness, including ambiguous loss (when someone is “there” but also not “there”) and anticipatory grief.

"Grieving Before A Death: Understanding Anticipatory Grief"

By Carol Bradley Bursack.Published by What’s Your Grief?

This article shares the author's experience of grieving before the death of her father, how to recognize anticipatory grief, and how to seek help in coping with anticipatory grief by attending a caregiver support group or working with a mental health professional.

"Grieving Before Death: Alzheimer's or Terminal Illness Grief"

Published by AgingCare, January 23, 2020

This article explains how grief can begin as soon as we become aware that death is a likely possibility.  For caregivers, anticipatory grief is often is coupled with an overall sense of exhaustion. A list of tips for dealing with anticipatory grief is provided.

"Why is anticipatory grief so powerful?"

Published by The Caregiver Space, April 16, 2015

This blog post explores the sources of anticipatory grief's power. The author, Harriet Hodgson, co-wrote a book in 2005 titled "Smiling Through Your Tears: Anticipatory Grief."

Expert-Level Resources

"Palliative Care Needs in Parkinson's Disease: Focus on Anticipatory Grief in Family Carers"

By Siobhan Fox, Atheerah Azman and Suzanne Timmons. Annals of Palliative Medicine, Vol. 9, Supplement 1 (February 2020).

Carers of people with advanced PD experience anticipatory grief, as well as depression and a higher caregiver burden. To improve carer outcomes, both before and after the death of a loved one carers should receive regular psychological assessment and support.

This list was updated by the Parkinson's Community Outreach Program, August 2020.