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Monday, April 21, 2014

Keeping The Secret of A Terminal Prognosis

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[Reviewed and updated August 29, 2024]

 If you want to keep a secret, you must also hide it from yourself.  ~ George Orwell in 1984

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 one I raised who grew up, left home and sent me emails and letters the whole time she has been gone. I love my family and would do anything to keep them from this pain. I know the pain. I have tried to keep it from them out of love. I don’t want my children or my husband to see or feel this pain.

My response: I am so very sorry that you are struggling with this very serious illness. I am sorrier still that you seem to be struggling alone, without the full support of your husband, children, family and friends. I wholeheartedly agree that this is your life and your dying, and you have every right to do it in your own way – provided that you don’t hurt yourself or anyone else in the process – but therein lies the rub, doesn’t it?

Have you considered the possibility that, by taking the “I Can’t Tell Them” position, you still could be hurting yourself or those you love, and those who love you?

It’s completely understandable that you want to protect your loved ones from pain and suffering – don’t we all want to do that? – but pain and suffering are part of being human, and part of our job as parents is to teach our children that death and loss are natural parts of living. We all know that nothing – absolutely nothing! – in this life lasts forever. Every living thing goes through a natural process with a beginning and an ending, with living in between. We may act as if it will never happen to us or to someone we love dearly, but the simple truth is that we all are going to die one day. The only difference between you and the rest of us is that you have a better idea of when that might happen to you, and what the cause will be.

How you view this prognosis you’ve been given is entirely up to you; you can view it as a death sentence, or you can see it as an opportunity to teach your children some of life’s most valuable lessons. Given what you’ve shared about your family, it is obvious that you and your husband have done a fine job so far teaching your children how to live. As I’m sure you know, that includes preparing them to face and deal effectively with life’s many losses and disappointments, now and in the future. Difficult as it may be, and harsh as it may sound, you might think of your illness as an opportunity for you to teach your children how to die.

We cannot change the facts here – much as we may wish it so, there is no magic wand to wave that will take away your illness – in that you have no choice. You do have several choices, however, in how you wish to approach the final days / weeks / months of your life. Since you have to do it anyway, why not do it armed with greater awareness of what to expect, and with greater confidence about how to make the end of your life a time for growth, comfort and meaningful reflection for yourself and the rest of your family?

There are so many resources that can help you, my dear, and I’d like to point you to some of them. (These and others are listed on the Care Giving Links page of my Grief Healing website, and I’m reviewing and adding to them all the time.) Whether you choose to take advantage of these resources is completely up to you, of course, but my prayer for you is that you will just take a single step and begin. As the saying goes, “A journey of a thousand miles begins with a single step.” Actually, you have begun already, by being brave enough to share your story so openly and honestly as you have done here. You are not alone on this journey; we are right here beside you, and we will continue to be, just as long as you will permit us to accompany you.

A Time to Live: Living With Life Limiting Illness ~ 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.

Americans for Better Care of the Dying ~ Aimed at improving care for us all when we need it most.

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.

Dying Well, Defining Wellness through the End of Life ~ Featuring the writings of Dr. Ira Byock, palliative care physician, professor and respected author.

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 followup to this mother's story appears here: Keeping The Secret of A Terminal Prognosis: Afterword]

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