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
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
My back hurts all day and all night. My GI tract sounds like a dishwasher. I know I am dying. I am grateful to be an old man with no young children dependent on me. No sleep visits me. I fantasize about Job. The oxy and Lomotil no longer help much. Thank you for hearing my complaint. I am scheduled for an MRI next week. “I am dying with the aid of many doctors”-Alexander
My friend, I am so sorry to learn of your serious illness, and my heart goes out to you. I hope you can take advantage of the support that palliative and / or hospice care can offer you, as you face whatever lies ahead. Please know that I am holding you in gentle thought and prayer. ♥
I’m slowly dying by an infection which is able to cause cancer but I don’t know how to tell my family, I haven’t lived long I am only 18. I am the only one that knows but I don’t know what to do, I don’t want to hurt the ones I love, my fiance loves me and has for the past 3 years of my life.. How do I possibly hurt the most important person in my heart, basically telling her I can’t be there for her no longer, I can’t give her the family she and I want, I’ve cried to god for help but I don’t even think god himself is able to help me except by taking me away.
I assume by your description of your illness that you are under the care of a qualified physician, and it concerns me that you say “I am the only one that knows.” If this is the case, then you are cutting yourself off from the very people you will need to support you through whatever you are facing and whatever lies ahead. If you think it would be hurtful to tell your fiance of your illness, put yourself in her shoes. How would you feel if the situation were reversed, and she chose to withhold such vital information from you? It seems to me that at some point your illness will become apparent and you’ll be able to hide it no longer from those who know you best. A better path might be for you to share with your loved ones what is happening to you, enlist their support, and let them love and care for you as you find your way through this difficult challenge. At the very least, I hope you will discuss your concerns with your physician and ask for some professional advice on how you might share this information with your loved ones. I’m so sorry this is happening to you, and I wish you all the best.