The Washington Post An excellent resource.
On Children and Deathby Elisabeth Kubler-Ross
On Children and Death is a major addition to the classic works of Elisabeth Kübler-Ross, whose On Death and Dying and Living with Death and Dying have been continuing sources of strength and solace for tens of millions of devoted readers worldwide. Based on a decade of working with dying children, this compassionate book offers the families of dead and dying children the help -- and hope -- they need to survive. In warm, simple language, Dr. Kübler-Ross speaks directly to the fears, doubts, anger, confusion, and anguish of parents confronting the terminal illness or sudden death of a child.
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Letter to Bereaved Parents
My, Dear Friends,
This is a letter to you who are in the process of losing a child. We have accompanied and followed so many moms and dads on this difficult journey, and this book is about the concerns they expressed and the lessons we learned.
As your child gets weaker and closer to death, you will wonder how much a child should know about the possible terminal outcome of the illness. I say "possible" because I have witnessed many miracles.
All children know (not consciously, but intuitively) about the outcome of their illness. All little ones are aware (not on an intellectual, but on a spiritual level) if they are close to death. They will ask occasionally, "Mom, am I going to die?" Or if they sense that you are unable to talk or even think about it, older children will write a poem or a page in their diary about it. They may confide in a friend or a special person who is not necessarily a member of the family, and thus more able to hear their often symbolic language. If they have a roommate in the hospital or a playmate in the hospital playroom, they may share their knowledge with another sick child. Few grownups ever know how many secrets are shared in such a way.
Every person, big or small, needs one person in which to confide. Children often choose the least expected person: a nurse's aide, a cleaning woman, or at times a handicapped child who comes to visit them in a wheelchair. They have brief but deep talks together that adults would marvel at, and since they have gone through the windstorms of life at an early age, they know things that others of their age would not comprehend. ThusGod who creates us all compensates the little ones as they fail physically. They become stronger in inner wisdom and intuitive knowledge.
They are aware of your pains and worries, your sleepless nights and concerns, and you should not hide them. Don't go into their room with a false "cheerful" smile. Children cannot be fooled. Don't lie to them that you just chopped some onions. How many onions are you going to cut? Tell them you are sad and sometimes feel so useless that you cannot help more. They will hold you in their little arms and feel good that they can help you by sharing comfort. Shared sorrow is much easier to bear than leaving them with feelings of guilt and fear that they are the cause of all your anxiety.
Should the siblings be involved and informed? Yes, every brother and sister of a critically ill child should become part of the care in one way or another. If the patient is at home, the brothers and sisters should be given specific tasks in the care of the sick one. They may be responsible for bringing the favorite dog in for regular visits after school. They may help to make yarn handicrafts (like "Eyes of God," a favorite pastime for children six years and up) when the patient's physical body gets too weak to play or do much. Siblings can take responsibility for running the tape recorder with favorite music, or they can serve one meal a day as long as the little patient can still eat.
Healthy children should not be made to feel guilty if they continue to laugh and giggle, to bring friends home or watch TV, go to a dance or a ball game, just as no mother should be discouraged from continuing to go to the hairdresser or the parents to an occasional bowling game or whatever they previously enjoyed.
The worst thing we can do to the terminally ill child and the rest of the family is to make a morgue out of the house while the child is still riving. Where there is laughter and joy, shared love, and little pleasures, the day-to-day difficulties are much easier to bear. If the little patient is overprotected, if every whim or desire is met, if everyone is expected to tiptoe around the house, the outcome is usually disastrous for the survivors.
When Bob was diagnosed as having cancer, every wish of his was met by parents who had much unresolved guilt and regret. The toys became more exclusive, expensive, and excessive. Bob obviously tested his parents and believed that he should get everything he could out of them. He barely played anymore but demanded more and more attention. He had never felt loved but he knew he could get material things "instead." Was it his punishment? His revenge for having been cheated out of the most necessary ingredient of life, the gift of unconditional love?
His brother Billy watched in amazement, and later with anger and envy, when his brother received literally everything he asked for. Famous athletes wrote to Bob and sent him autographed basketballs and baseballs. He was taken to Disneyland and to the Bahamas. He was flown to Tennessee to see the Grand Ole Opry and into the mountains of Colorado.
Billy began to resent his brother and started to test his parents himself. He asked for little things first, then bigger ones -- always with the same result. Father's answer was always a very angry, "No, you cannot have it. We can't afford it." When he questioned why his brother got everything, the answer was a stereotype: "Would you rather have cancer?" No, Billy would not like to have cancer. He would not like to have the bone marrow needles. He would not like to lose his hair. But what had one thing to do with the other?
Billy started to injure himself weekly, but no one paid attention to him. The parents were too preoccupied with his sick brother. When he asked for a sandwich for lunch, his mother snapped at him, "Can't you see I'm busy? Fix it yourself." Billy started to wet his bed and got a spanking for it. Later, a few months before his brother died, a teacher noticed that Billy was very cruel to a handicapped child who attended school in a wheelchair. But no one noticed it beyond that remark in his school files.
Billy took me to my car as I left my house call on my first visit to their home. As I opened the car door, I asked him to sit with me for a while and tell me how things were going for him. He looked surprised, "For me?"
"Yes, for you," I answered. "Such illnesses are much harder on the brothers and sisters than they are on the patient." He looked sadly at me and responded, "Do you know that I have asthma? But I guess that's not enough."
So it is important to remember to also be good to yourself and to the rest of the family. Continue to share among all of them, and do not overindulge the little patient: You only leave him with guilt and a negative feeling about his true worth. "Why is it that I never got these things, and now that I have cancer, everything is possible?"
A terminal illness usually costs a fortune, and even the best insurance may not cover all the costs. There are many foundations which may help in a variety of ways, but we have too often seen families who were left with bills for $100,000 or $200,000 after the death of a child. It would be far more meaningful if such family problems could be discussed at the dinner table, so the other brothers and sisters could share the concern and be able to offer voluntarily, and without pressure or guilt, to give up certain extra pleasures in order to contribute to the family's welfare. They would be left with a sense of importance and pride.
Many little brothers and sisters have also been taught how to give oxygen or how to gently suction their little patient so they can offer contributions to the care of the patient, giving them the same sense of self-esteem. Those children will not wish their brothers (or sisters) to die in order to bring some semblance of a family life back into their existence. Children (siblings) who make such remarks in a burst of anger should not be punished. They are voicing a cry for help before it is too late, and understanding adults should spend some time alone with them and let them ventilate their frustration, sense of unimportance, and feeling of neglect.
Meet the Author
Elisabeth Kübler-Ross, MD, [1926–2004] was a Swiss-born psychiatrist, humanitarian, and co-founder of the hospice movement around the world. She was also the author of the groundbreaking book On Death and Dying, which first discussed The Five Stages of Grief. Elisabeth authored twenty-four books in thirty-six languages and brought comfort to millions of people coping with their own deaths or the death of a loved one. Her greatest professional legacy includes teaching the practice of humane care for the dying and the importance of sharing unconditional love. Her work continues by the efforts of hundreds of organizations around the world, including The Elisabeth Kübler-Ross Foundation: EKRFoundation.org.
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Have you or someone close to you lost a child? There is hope...you must read this ground-breaking book! Elizabeth Kubler Ross talks about children and death like no other!!
I haven't seen this book, but through its title, it looks okay for family who has a dying kid.