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.

Marty Tousley, RN, MS, FT, DCC, responds:  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 Caregiving page of my Grief Healing Web site, and I’m reviewing and adding to them all the time. Also, try typing the word “dying” into Open to Hope’s search engine at the top of this page, and see all the articles that come up for you here.) 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.

Americans for Better Care of the Dying 

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.) 

Anticipatory Grief: A Family-Centered Approach

Caring Connections

Dying Well, Defining Wellness through the End of Life

Facing Death and Finding Hope: A Guide to the Emotional and Spiritual Care of the Dying 

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

The Four Things That Matter Most: A Book About Living 

Frequently Asked Questions about Hospice Care 

Health Journeys: Resources for Mind, Body and Spirit 

Illness: A New Perspective on Suffering 

It’s Not Too Late: An Interactive Guide for Exploring and Expressing Love as Life Nears Its End 

© 2012 by Marty Tousley, RN, MS, FT, DCC

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Marty Tousley

As both a bereaved parent and a bereaved daughter herself, Marty Tousley, RN, MS, FT, DCC has focused her practice on issues of grief, loss and transition for more than 40 years. She joined Hospice of the Valley in Phoenix, AZ as a Bereavement Counselor in 1996, and for ten years served as moderator for its innovative online grief support forums. She obtained sole ownership of the Grief Healing Discussion Groups in October, 2013, where she continues to serve as moderator. A frequent contributor to health care journals, newsletters, books and magazines, she is the author of Finding Your Way through Grief: A Guide for the First Year: Second Edition, The Final Farewell: Preparing for and Mourning the Loss of Your Pet, and Children and Pet Loss: A Guide for Helping. She has written a number of booklets for Hospice of the Valley including Explaining the Funeral /Memorial Service to Your Children and Helping Another in Grief, as well as monthly columns, e-books and online e-mail courses for Self-Healing Expressions, addressing various aspects of grief and loss. With her special interest in grief and the human-animal bond, Marty facilitated a pet loss support group for bereaved animal lovers in Phoenix for 15 years, and now serves as consultant to the Pet Loss Support Group at Hospice of the Valley and to the Ontario Pet Loss Support Group in Ontario, Canada. Her work in pet loss and bereavement has been featured in the pages of Phoenix Magazine, The Arizona Republic, The East Valley Tribune, Arizona Veterinary News, Hospice Horizons, The Forum (ADEC Newsletter), The AAB Newsletter, Dog Fancy Magazine, Cat Fancy Magazine, Woof Magazine and Pet Life Magazine. Marty’s Grief Healing website and blog offer information, comfort and support to anyone who is anticipating or mourning the loss of a loved one, whether a person or a cherished companion animal. She is certified as a Fellow in Thanatology (Death, Dying and Bereavement) by the Association for Death Education and Counseling, as a Distance Credentialed Counselor by the Center for Credentialing and Education, and as a Clinical Specialist in Adult Psychiatric/Mental Health Nursing Practice by the American Nurses Association. Marty and her husband Michael have two grown sons and four grandchildren. They spend their winters in Scottsdale, AZ and Sarasota, FL, and enjoy their summers in Traverse City, MI. Marty welcomes reader questions and comments, and can be contacted at tousleym@aol.com or through her Web sites, at GriefHealing.com, GriefHealingBlog.com, and GriefHealingDiscussionGroups.com.

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