A reader writes: I am married and the mother of three children. I have been told by my doctors that I have a rare and terminal illness. My husband and children love me and need me, and they do not know that I am dying because I cannot tell them.
How can I tell the ones who count on me that I won’t be here for them? How can I tell them that I brought them into the world with love and tears, and now I’m leaving?
My husband and children don’t know. I won’t let them know.
Why should they feel this? I never lied to them. I didn’t want to share this with them because I am not strong enough to deal with their grief. I feel their love. I need it and it gives me strength. But just as I spent a lifetime helping and hand-holding, I can’t let go of my love for them or my responsibility to them long enough to let them grieve.
I know I am being selfish. But I am dying. Please believe me when I say that I don’t want to leave. I want to see my grandchildren born. I want to see my youngest graduate from college. I want to hold the child I raised who grew up, left home, and sent me emails and letters all the years she has been gone.
I love my family and would do anything to spare them this pain. I know the pain. I have tried to protect them from it out of love. I don’t want my children or my husband to see or feel this suffering.
My response: I am so sorry that you are facing this serious illness. I am sorrier still that you seem to be carrying this burden alone, without the full support of your husband, children, family, and friends.
I agree that this is your life and your dying, and you have every right to face it in your own way. But I wonder if you've considered the possibility that keeping this secret may ultimately cause more pain for both you and those you love.
It is completely understandable that you want to protect your family from suffering. Most of us would do the same if we could. But pain and loss are part of being human, and part of our responsibility as parents is to teach our children that death, like birth, is a natural part of life.
We all know, at least intellectually, that nothing lasts forever. Every living thing has a beginning and an ending, with life unfolding in between. We may live as though death will never touch us or those we love, but the truth is that one day it will. The difference between you and the rest of us is that you have been given information about what may lie ahead.
How you view this prognosis is entirely up to you. You can see it as a death sentence, or you can see it as an opportunity. Given what you've shared, it is obvious that you and your husband have done a wonderful job teaching your children how to live. Perhaps, difficult as it may be, this is also an opportunity to teach them how to face death with courage, honesty, love, and grace.
We cannot change the reality of your illness. There is no magic wand that can take it away. What remains within your control is how you choose to spend the time that lies ahead.
You can continue carrying this burden alone, or you can allow those who love you to walk beside you. While sharing the truth may expose your family to grief, it also gives them a priceless gift: the opportunity to love you openly, support you fully, and make meaningful memories together while there is still time.
As painful as those conversations may be, they can also become some of the most important and healing moments your family will ever share.
There are many resources available to help you navigate this journey. My hope is that you will take just one small step toward seeking support. As the saying goes, "A journey of a thousand miles begins with a single step." In truth, you have already taken that step by sharing your story so honestly here.
Please know that you do not have to walk this path alone. Others have traveled it before you, and many caring professionals and fellow travelers stand ready to help.
The following resources may be especially helpful:
A Time to Live: Living With Life Limiting Illness, by Barbara Karnes Booklet by hospice nurse Barbara Karnes addressing issues of comfort, nutrition, and sleep as they relate to the palliative care patient. It provides guidance to help them live the best life they can within the confines of their body and disease. See also Gone From My Sight: The Dying Experience, aimed at helping family members understand and watch for signs that the dying process has begun and what to do when that happens. Both of these booklets are in Barbara's End of Life Guideline Series bundle.
Handbook for Mortals: Guidance for People Facing Serious Illness (You can read parts of this wonderful book online, at the Americans for Better Care of the Dying site, listed above.)
CaringInfo ~ Information and support for people planning ahead, caring for a loved one, living with an illness or grieving a loss.
Facing Death and Finding Hope: A Guide to the Emotional and Spiritual Care of the Dying ~ "A book of great depth and grace, it is destined to become a classic in the literature on death and dying."
Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying ~ A book "filled with practical advice on responding to the requests of the dying and helping them prepare emotionally and spiritually for death, [showing] how we can help the dying person live fully to the very end."
The Four Things That Matter Most: A Book About Living ~ "With practical wisdom and spiritual punch, [this book] gives us the language and guidance to honor and experience what really matters most in our lives every day."
Frequently Asked Questions about Hospice Care ~ An informative fact sheet about hospice from the Hospice Foundation of America (HFA)
Health Journeys: Resources for Mind, Body and Spirit ~ Latest news, insights, findings about Guided Imagery, Meditation, Hypnosis and other Mind-Body Practices
It’s Not Too Late: An Interactive Guide for Exploring and Expressing Love as Life Nears Its End ~ A book in journal format, offering "a practical way to identify loving feelings and to then express them in the written form within their book to be shared with family."
[Note: A touching follow-up to this mother's story appears here: Keeping The Secret of A Terminal Prognosis: Afterword]
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:
- "I Don't Want To Talk About It" by Barbara Karnes, RN
- Book Review: The Best Care Possible: A Physician's Quest to Transform Care Through The End of Life by MaryFrances Knapp
- Caregiving in Serious Illness: Suggested Resources by Marty Tousley
- Coping with Cancer: Supportive and Palliative Care via The National Cancer Institute
- End-of-Life Dilemma: Telling the Kids by Karen Rancourt, PhD
- Giving Terrible News to Those We Love by James Salwitz, MD
- How to Say Goodbye When Someone You Love Is Dying via Crossroads Hospice
- Is It Grief or Depression? A Terminal Illness Can Lead to Both by Kathleen Clohessy
- Keeping The Secret of A Terminal Prognosis: Afterword by Marty Tousley
- My Mom Was Dying, and Nobody Told Me by Brennan C. Wood and Darcy Krause
- Should I Tell? Discussing Terminal Prognosis by Barbara Karnes
- Should Our Dad Be Told That He's Dying? by Marty Tousley
- Talking to Your Kids About Your Terminal Illness by Amanda Menard
- The Challenge of A Loved One Who Is Dying
- The End of the Process: Should I Tell Anyone I Have Cancer? by Stan Collender
- The Silent Goodbye: Should I Tell My Friends? by Emily Yoffe
- Tips from a Hospice Nurse: What to Say to A Dying Person
- When A Loved One Is Terminally Ill via HelpGuide.org
- When Families Keep The Truth from Loved Ones in Hospice by Larry Patten
- When Pretense Is All That's Left by Kathleen Clohessy
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