FOR THOSE WHO GIVE AND GRIEVE - Donor Network West (PDF)

FOR THOSE WHO GIVE AND GRIEVE A Book For Donor Families  ii © August 1990 First Edition © August 1993 Second Edition © April 1997 Third Edition © February 2002 Fourth Edition © September 2003 Fifth Edition © September 2006 Sixth Edition © September 2007 Seventh Edition © August 2009 Eighth Edition © June 2011 Ninth Edition © April 2012 Tenth Edition © July 2013 Eleventh Edition © June 2015 Twelfth Edition National Kidney Foundation National Donor Family Council 30 East 33rd Street New York, NY 10016 Phone: 800.622.9010 or 212.889.2210 Visit us online at www.kidney.org/donorfamily E-mail: [email protected] All rights reserved. No part of this publication may be reproduced without the prior written permission of the National Kidney Foundation, Inc. ISBN: 0-9629721-3-4 Excerpt from “Little Gidding” in Four Quartets, © 1943 by T. S. Eliot and renewed 1971 by Esme Valerie Eliot, reprinted by permission of Harcourt Brace Jovanovich, Inc.  iii Dedication In loving memory of Katie, who lived, laughed and loved, and who helped us know what to do. We don’t know who the direct recipients of her gifts were, but we do know that many people have benefited from them. And to all organ and tissue donors—may their families find peace, love and hope. We fondly remember… Katie Coolican August 16, 1977–September 25, 1983 Her memory continues to help and guide us in our work with donor families. Our love to the entire Coolican family. – National Kidney Foundation “What we call the beginning is often the end. To make an end is to make a beginning. The end is where we start from.” from “Little Gidding” by T. S. Eliot  iv Grief is different for each of us. If you aren’t ready to read this book now, please put it aside. You may be able to turn to it at a later time. If you have questions or concerns about your loved one’s donation, we encourage you to contact the organization below or the NKF’s National Donor Family Council. We have resources that may help you. For More Information Contact: _________________________________________ Address: _______________________________________________________ Phone: _______________________________________________________ Email: _______________________________________________________ Notes: _______________________________________________________ _______________________________________________________ If no organization is listed above, please contact: National Kidney Foundation National Donor Family Council 30 East 33rd Street New York, NY 10016 Phone: 800.622.9010 or 212.889.2210 Visit us online at www.kidney.org/donorfamily E-mail: [email protected]  v Table of Contents A Letter from a Donor Mom .......................................................vii Preface ..............................................................................................ix Introduction ..................................................................................... 1 Who Are Donors and Their Families? ......................................... 2 If Your Loved One Was an Organ and/or Tissue Donor ........... 3 Donation after Cardiac Death ....................................................... 3 Understanding Brain Death ........................................................... 3 If Your Loved One Donated to Research ..................................... 4 If You Receive a Bill by Mistake .................................................... 5 Do Transplants Really Work? ........................................................ 5 When Our Loved Ones Died… Thoughts from Donor Families .................................................... 7 Grief Is a Natural Response to Loss .............................................. 9 Guilty, Sad and Lonely .................................................................... 9 Exhausted and Depressed ............................................................10 Am I Losing My Mind? ................................................................11 Anger as a Grief Reaction ............................................................13 Grief and Spirituality ....................................................................15 What Can Help? ............................................................................19 Coping with Sleep Difficulties While Grieving ........................22 Nutrition: The Foundation of Self-Care ....................................27 One Step at a Time ........................................................................30  vi Renewed Grief ...............................................................................31 How a Memorial Space Can Help a Grieving Person ..............33 Ask for What You Need ................................................................35 A Husband’s Letter to His Friends and Coworkers ..................36 Healing through Loss: Can Grief Counseling Help You? ........38 Seeking Grief Support or Other Services? .................................40 Getting the Support You Need ....................................................41 Grieving Children, Children Grieving .......................................43 Helping Adolescents Cope with Grief ........................................45 Going Home after Donor Events ................................................47 What to Do with Our Memories ................................................49 As Time Goes On ..........................................................................51 Transplant Recipients ................................................................... 53 Writing to Recipients ......................................................... 53 Thoughts from Transplant Recipients ............................ 55 Donated Skin Saves Burn Victim ....................................56 Aurora’s Story ..................................................................... 57 Forever Linked ....................................................................58 The Smile that Love Restored ..........................................60 About the National Donor Family Council ............................. 62 Online Home for Donor Families ..............................................63 Suggested Reading ........................................................................63 Bereavement Resources and Support Groups ..........................64 Our Heartfelt Thanks .................................................................. 65  vii A Letter from a Donor Mom As a donor family member, I have some understanding of how you may feel. Know you are not alone. Your pain is shared by those of us who have also learned to live without someone we love. Tragedy strikes when we least expect it, and we never expect it to happen to us. How could I have guessed on a bright, beautiful fall day in 1983, as I watched my healthy six year old skip down the driveway to board her school bus, that it would be for the last time? She turned, waved and gave me a big dimpled smile; the last I was to see. Six hours later, she collapsed on her school playground from a sudden brain hemorrhage, and within a few days, she became our family’s first organ and tissue donor. I thought my world had ended. How could this have happened? How could I go on? It wasn’t real. Children don’t die, and certainly not my child who was so full of life and love which she gave so freely. No one could really understand how I was feeling. I felt alone. The pain was unbearable. I thought I would never laugh again. As the months passed, I slowly came to understand that death does happen. Death is an inevitable part of life, an ending, but also a beginning. Slowly, very slowly, with the love and support of my family, some old friends, and some new ones too, I have gone on. In the beginning, I took small steps toward healing, just one minute at a time. Then slowly, I found that I could handle a whole day. At times, I was hard on myself. I should feel better. I should be able to do this or that. There was guilt and anger, sadness and loneliness. There must have been something I could have done to save my child, but there were no answers.  viii And then, I began to realize that I could once again appreciate a blue sky, a pretty flower or a child’s giggle. The days did go on; the pain was softer. I didn’t feel so alone, and I could laugh again. The love that Katie and I shared will always be with me. I came to understand that never having had her love, never having had our Kate, would have been the greatest loss of all. She lived, she gave to others, she made a difference. And so, I say to you now, you need not be alone, your pain may soften in time and you may laugh again, too. My thoughts and prayers are with you. Maggie, Donor Mom "This book seems to be so universal that all who grieve can relate and benefit from it; whether it be loss of a child, parent or spouse.” Pamela Grindstaff Modesto, CA  ix Preface This book was written in the hope that it may help you now and in the months to come. It was written by a donor mother who is also a nurse and a bereavement coordinator. It expresses not only her thoughts and feelings about grieving and growing, but those of other donor families who were willing to share what they have learned from their grief. The decision made by our donor mother and these families, to allow their loved ones to become donors, was a personal one. It was the right decision for them, as we hope your decision was the right one for you. Some families find that donating has given some meaning to their loss, while others are still undecided. The National Donor Family Council of the National Kidney Foundation  x “We knew if our daughter couldn’t live, both she and we would want someone else to have a better life.” Barbara Wetzel & Family Chesterfield, MO  1 Introduction This book has been written especially for you, the donor family. You are very special, and what you and your loved one have done is vitally important. You looked beyond your most painful and personal loss with courage and compassion, and were able to extend the gift of life to someone you did not know. For this very special gift, the recipients and their families will always be grateful. Now, what is important is YOU—and how you are feeling. You may feel alone with no one to share your deep sense of loss. However, you are not alone. You can share with other donor families and with those around you. The pain you are feeling will eventually soften. This book was written to offer you some simple thoughts about the loss of someone you love. In developing this book, we have spoken to many donor families. We thank them for allowing us to share their thoughts, feelings and personal experiences with you. This book will also try to answer some of the questions you may still have about your loved one’s donation, and it will direct you to people in your area who can help answer your questions. We have also compiled a list of other resources that may comfort you or help you to better understand the way you are feeling. Last, we hope this book will help you as you begin to live without someone you love.  2 Who Are Donors and Their Families? Donors and their families are very special people, like you, who have given a unique gift. Thousands of men, women and children become organ and tissue donors every year. Donor families are also those who wished to donate, but for some reason were not able to, for it is not so much what is donated, but the commitment to donate. Donors are of different ages, cultures and religions, yet they have common traits. Usually, they are healthy individuals who die suddenly and unexpectedly. Some gave careful thought to donation and made a conscious decision to donate to enhance or extend lives or to help with research efforts. Some signed a donor registry or card or discussed their wishes with their families. Others have families who made the decision for them at a very difficult time. All donors have special families like you, who at a most difficult time made the decision to donate. Donors leave behind family members and friends who struggle with their loss, knowing that, in the midst of their tragedy, sorrow and grief, other lives have been improved or saved through transplantation and research.  3 If Your Loved One Was an Organ and/or Tissue Donor Many of us had to say goodbye quickly, without preparation. This experience was extremely difficult, perhaps the hardest thing we had to do. But knowing the person was an organ and/or tissue donor gave many of us hope. One donor can benefit many people. Organs that can be transplanted include the kidneys, heart, lungs, liver and pancreas. Tissue donation offers the opportunity to perform a humanitarian service to many. Donated corneas can restore sight, heart valves can replace those that are damaged, bones can prevent amputations, veins can restore blood circulation, tissue can repair tendons and ligaments, and skin can help burn victims heal. Donation after Cardiac Death Donation after Cardiac Death (DCD) means that after the heart has stopped beating, and death is pronounced by a physician, organs and tissues may be recovered and offered for transplant. A person with a severe neurological injury, such as a stroke, bleeding into the brain, trauma, or suffocation, may be a DCD donor. Understanding Brain Death We may have seen a heartbeat on the monitor and a chest moving up and down; we may have left our loved one looking flushed and feeling warm—in fact, looking as if he or she were only sleeping. But the doctors and nurses told us that our loved one had suffered brain death. And brain death is death.  4 When brain death occurs, the brain is no longer able to send messages to the body to make it work—to breathe, regulate its temperature and perform other vital functions. When the lungs do not take oxygen into the body, the organs and tissues die. A machine called a ventilator brings air (oxygen) into the body to keep the organs and tissues working. That is why our loved one looked flushed, warm and alive. The death of our loved one was determined by sound and accepted medical guidelines. Several medical tests were carefully conducted to confirm our loved one’s death. Death must be determined before donation can occur. After death has been declared, the recovery of organs takes place in the operating room. The kidneys, heart, liver, lung, pancreas and small bowel can be donated and save the lives of thousands of waiting recipients each year. If you have questions about brain death or your loved one’s donation, you can request a free copy of Brain Death: A Simple Explanation by visiting the NKF Store at www.kidney.org/store. If Your Loved One Donated to Research Not all organs can be used for transplantation. If they can’t be transplanted, organs and other tissues can be donated to research. These donations help researchers find new ways to treat diseases, such as cancer, diabetes, heart disease and kidney disease, along with many others. Research affects untold numbers of patients who can benefit from the medical advances. In addition to major organs, tissues such as bone, muscle, tendons, and skin are needed for medical research, pharmaceutical studies, and medical education and training programs.  5 If You Receive a Bill by Mistake Donor families are never charged for the donation of their loved one’s organs or tissues. Therefore, you should never receive a bill for any of the procedures related to donation. Sometimes hospitals send part of a bill by mistake. If you receive any charges that you think should not be part of your bill, call the recovery organization immediately (their number may be listed on the first page of this book or you can contact the NDFC to help you find them). Do Transplants Really Work? Like other donor families, you may be wondering whether the gift of your loved one’s organs and tissues will actually enhance or extend the life of another. Consider the following: Millions of people have benefited from organ and tissue transplants. Success rates for heart, liver, heart/lung, kidney and pancreas transplants continue to improve each year. The transplantation of corneas results in improved or restored vision in nearly all of those with reduced eyesight. Transplanted skin tissue is used to help burn victims. Bone grafting is performed to replace bones destroyed by tumors, trauma and infection. This allows limbs to be spared that might otherwise have to be amputated. Organ and tissue transplantation works. Transplantation brings help and hope to thousands of people each year. Your gift and that of your loved one is what makes transplantation possible. Organ and tissue donation is literally a “gift of life.”