Anticipatory Grief and Mourning: Suggested Resources

[Reviewed and updated on April 7, 2024.]

So off they went together. But wherever they go, and whatever happens to them on the way, in that enchanted place in the top of the Forest, a little boy and his Bear will always be playing.  ~ A. A. Milne

A reader writes: I am the mother of a 6-year-old with Duchenne muscular dystrophy (DMD). His life expectancy is 20 years old. I am also an LPC intern currently working as a crisis counselor for disaster victims. I am interested in specializing in grief, learning more about anitcipatory grief, and assisting other families that are dealing with expected loss. I see anticipatory grief as largely overlooked in the grief and loss field. What are the best resources for those experiencing anticipatory grief?

My response: My dear, I’m so sorry to learn of your son’s serious illness, and as a mother myself, I cannot imagine how challenging this knowledge must be for you. It is extremely difficult to know that over time your loved one’s health and quality of life will deteriorate, much less having to witness it as a primary caregiver. And as you are already aware, over the next several years you will be experiencing all the emotions of grief in anticipation of losing your beloved son. You are literally living in the shadow of death, and I am in awe of your courage – not only in wanting to learn as much as you can about this process, but also in your wanting to assist other families struggling to cope with expected loss. You have my deepest admiration and respect.

You’ve asked about the best resources for those experiencing anticipatory grief, and here are some I would suggest:

Anticipating The Death of One's Parents (Article by Marty Tousley)

Anticipatory Grief and Mourning (Article by Marty Tousley)

Anticipatory Grief and Mourning (Online Grief Discussion Forum)

A Time to Live: Living with A Life-Threatening Illness (Booklet by Barbara Karnes, RN)

Before All Is Said and Done (Book by Pat Miles)

Chronic Sorrow (Book by Susan Roos)

Companioning the Dying: A Soulful Guide for Caregivers (Book by Greg Yoder)

Dying Well: Peace and Possibilities at The End of Life (Book by Ira Byock, MD)

Empowering Caregivers – Choices, Healing, Love (Website for Caregivers)

Emotional Renewal for Caregivers: Looking After Yourself While Helping a Loved One 

Facing Death and Finding Hope: A Guide To The Emotional and Spiritual Care Of The Dying (Book by Christine Longaker)

Final Gifts : Understanding the Special Awareness, Needs, and Communications of the Dying (Book by Maggie Callanan and Patricia Kelley)

Grief and Caregiving (from Hospice Foundation of America)

Grief During The Last Stages of His Life (Article by Barbara Karnes, RN)

Grieving Before A Loved One Dies (Article by Batya Swift Yasgur, MA, LSW)

Handbook for Mortals: Guidance for People Facing Serious Illness (Book by Joanne Lynn and Joan Harrold)

How Caregivers Deal with Anticipatory Grief (Article by Paul Wynn)

How to Cope with Anticipatory Grief at Work (Article by Sabina Nawaz)

How to Cope with Anticipatory Grief  (Article by Jessica Estrada)

"I'm So Angry That He's Sick" (Article by Barbara Karnes, RN)

Journeys End: Death, Dying and The End of Life (Book by Victoria Brewster and Julie Nierenberg)

Living with Grief When Illness is Prolonged (Book by Kenneth  Doka, Ed.)

Make-A-Wish Foundation

My Mom Is Dead (and that is OK) (Article by Nancy E. Lundebjerg, MPA)

Our Children Aren't Supposed to Die Before Us (Article by Barbara Karnes, RN)

Saying Goodbye: A Guide to Coping with a Loved One's Terminal Illness (Book by Barbara Okun and Joseph Nowinski)

Smiling through Your Tears: Anticipating Grief (Book by Harriet Hodgson and Lois Krahn)

The Divine Art of Dying: How to Live Well While Dying (Book by Karen Speerstra and Herbert Anderson)

The Five Wishes Living Will Makes End of Life Easier (Article by DailyCaring Editorial Team)

The Four Things That Matter Most : A Book About Living (Book by Ira Byock, MD)

The Four Things That Matter Most (YouTube Video with Ira Byock, MD)

The Long Goodbye: Coping with Sadness and Grief Before a Loved One Dies (Article by Judith Graham)

Tough Transitions: Navigating Your Way through Difficult Times (Book by Elizabeth Harper Neeld, PhD)

Understanding Family Members' Grief for A Living Loved One (Article by Emily Caldwell)

What Is Anticipatory Grief? (Article by Korin Miller)

Why Is Anticipatory Grief So Powerful? (Article by Harriet Hodgson)

Your feedback is welcome! Please feel free to leave a comment or a question, or share a tip, a related article or a resource of your own in the Comments section below. If you’d like Grief Healing Blog updates delivered right to your inbox, you’re cordially invited to subscribe to our weekly Grief Healing Newsletter. Sign up here. 

Related Articles:

• Anticipatory Grief
• Anticipatory Grief -- An Early On-Ramp To One's Grief Journey
• Anticipatory Grief, Caregiver Burnout, and the Primacy of Respite Care
• Anticipatory Grief: Ask Dr. Neimeyer
• Anticipatory Grieving: Mourning The Living
• Anticipatory Grief: The Pain of Impending Loss
• Grief: Understanding The Process
• Grieving Before a Death: Understanding Anticipatory Grief
• How to Cope with Anticipatory Grief and Ambiguous Loss
• Losing My Uncle Introduced Me to A Type of Grief You've Probably Never Heard Of 
• 'My Mom's Death Would Be A Relief': The Complicated Emotions of Caregiving
• Resources to Help Families and Professionals Talk About Death and Dying with Young Adults
• Should Our Dad Be Told That He Is Dying?
• The Grim Fog of Grief and Preparing for Life After
• What Is Anticipatory Grief?
• What Is Anticipatory Grief and How Does It Work?

© by Marty Tousley, RN, MS, FT, BC-TMH