Question from Trish: I am the mother of a 6-year-old with Duchenne MD. His life expectancy is 20 years old. I am also an LPC intern (I currently work as a crisis counselor for hurricane victims in south Louisiana). 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?

Marty Tousley, CNS-BC, FT, responds: My dear Trish: 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. 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:

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

Coping As You Anticipate a Loss (Article by Marty Tousley)

Dying Well, Defining Wellness through the End of Life: Dr. Ira Byock

Empowering Caregivers – Choices, Healing, Love

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

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

Final Gifts : Understanding the Special Awareness, Needs, and Communications of the Dying (Book)

The Four Things That Matter Most : A Book About Living

Grief, Loss and Caregiving (Book Chapter by Ken Doka)

Handbook for Mortals: Guidance for People Facing Serious Illness (Book by J. Lynn)

Living with Grief When Illness is Prolonged

Make-A-Wish Foundation

Music for Healing and Recovery: Essential Tools for Caregivers

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

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