I am very ill. Who can I talk to about dying?
Children that are very ill have many special questions. They need to be free to speak of issues about their own life and death. Sometimes it is too difficult for others to discuss their future and what will happen to them, or simply to cope with their present condition. This can create a feeling of isolation and alienation for an extremely ill child. It is helpful to have a caring adult who can be present and listen to any and all questions and who can openly talk about future plans and options, related issues such as how life may change, medical treatment, or even death concerns.
Emily (10): a case study
Emily is 10 years old. She has leukemia and has been living with her illness for four years. Her oncologist, Dr. Martin, has given Emily three rounds of chemotherapy. This time he says it isnt working anymore.
Dr. Martin told Emily and her family she is seriously ill and that he doesnt know if and when she will get better. He doesnt know how long she will live. Her brother Max and sister Amy worry a lot too. Its hard for siblings. They want to help Emily and love her a lot. But sometimes they get jealous that people dont pay as much attention to them and only seem to ask about Emily and her illness.
Her mom and dad cry all the time. Thats hard for Emily and she wishes she could make them happy. She also feels very alone because no one really wants to talk to her about dying and she wonders inside, Wont anybody talk to me about dying?
Well, living with cancer is hard. Living with it and knowing you might die is even harder. Will you talk about dying with me?
Emily, I know you have been sick for a long time. You and your family and Dr. Martin have tried so hard to help you get better. Now the doctors say you might not. Yes, I will talk to you about dying. Im glad you feel you can trust me. What would you like to talk about?
Nobody wants to talk to me about dying especially my mom and dad. They just cry. How can I make them feel happy?
I know it is hard to see your parents so sad. They love you so much. It is a great idea to think about what makes them happy. Can you think of something?
I know. They love to watch me dance. I want them to remember me as a beautiful ballerina, dancing in heaven. Do you think that would make them feel good?
Yes I do. Lets take a picture of you dancing in your best ballerina costume - the one you love the most. Then we can give it to Mom and Dad as a present. You can even pick out a beautiful picture frame to go with it.
My brother Max gets angry with me for being ill. He wants my presents. What should I do?
Sometimes brothers and sisters feel left out because adults talk so much about you and your illness. People might not ask them how they are and only ask about you. That makes them feel bad. Then you get lots of presents for being ill and they dont get any. I hope that helps you understand Maxs anger.
Maybe you could help them feel special too. Let them know how much you appreciate their help and the things they do for you. Ask them how they are. There might even be a few presents youve received you can give to Max, or ask him which one he would like. It is good for you to realize that your illness affects the whole family, and your mom and dad and brother and sister have feelings about it.
Sometimes I wonder - when and where will I die?
No one knows when they will die, but they can plan where they would like to be. There are different places you can choose. You can stay in the hospital where doctors or nurses can take care of you and everyone you love can visit. You could also stay at home and pick a favorite room, or bed, or window to be near. Helpers and visitors can be with you there.
If I had a choice, I would like to die at home. But what will I do with all of my stuff?
You might think about which people are special to you and if you would like to give your things to them. We can make a list of the people and what you want to do with your things. Then we can give the list to your mom and dad. Let me know when you are ready and we can make a list.
My best friend Beth can have my dolls, and I think my brother Max would like my TV. My little sister Amy can have all of my stuffed animals - all except Tiger. Can I keep Tiger for me?
Of course you can. Why dont you make a list of all of your wishes?
I feel happy now. It feels good to talk about dying and make some plans. Now I feel I can go on living and not worry so much.
Talking to critically ill children helps them cope with their present illness and creates a safe space to share concerns about dying. All too often family members find this too painful. Moms and dads and siblings need to be reassured that open dialogue can be beneficial for their loved one. If they are not able to speak about issues of illness and death, they can help find a caring adult that can hold this sacred space for discussion.