My mom is dying. What can I do?

It is important for children to feel included as an active member of the family if someone is very ill. Reminding them they can do lots of things to help during an illness allows for participation. Preparing them for the future if a loved one is terminally ill is also helpful. Children can then share feelings, ask questions, or engage in projects to work through a difficult time.

Sophie (8): a case study

Eight-year-old Sophie was told her mother had lung cancer. The disease had spread through her body and chemotherapy was no longer useful. Her mom explained to her that she was very, very ill and the doctors didnt think they could help her body get better. The doctors arent sure how long I will live. Nobody really knows. They say I could die. For now I am very ill.

Mom wrote a letter to Sophie for her to have on every birthday for many years to come, including memories, pictures, and important Mom advice for each year. She gave her the first one on her 9th birthday and reminded her another would be coming at 10.

Sophie created a video interview with Mom called, My Favorite Person: Starring My MOM. She made a list of questions for Mom to answer and recorded everything. The questions ranged from Moms childhood to memories of Sophie as a baby, and Moms favorite colors and foods. They both had so much fun making it.

Nobody knew how long Mom would live, but Sophie knew she wanted to do everything she could to help her mom.

Im so sad. I love my mom and she is dying. I want to help her. What can I do?

Sophie, it is very sad to think about your mom dying. Right now she is with you and there are things you can do to help her feel good. You could bake her favorite cookies, say a prayer with her, give her medicine, share a favorite story, or tell a funny joke. You can even sit quietly with her and hold her hand. That can be very comforting if she feels ill or tired. Is there anything special you would like to do?

I would like to give her something special of mine my music box. Is that OK?

I think she would love it. Would you like to bring it here? We could go to the store and pick out special wrapping paper and bows. Then you could write a note to put inside. Maybe you could suggest for Mom to put it right by her bed. Then she could listen to the music and think of you.

Can Mom and I still do things together?

You can still do lots of things together. You love each other very much and it can feel good to tell each other that. You can eat dinner together, watch a movie, play a game, or sing songs. Every time you say goodbye to Mom, you can tell her how much you love her and give her a big hug. I think she would like that.

Rafi (6)

I heard my Mom say Grandpa is going to die. That makes me so sad. Is Grandpa really going to die?

Grandpa is very ill. He is old too. He had a heart attack a few weeks ago. The doctors and nurses are trying to help him get better, but he is still really, really ill. No one knows when someone will die, but the doctors do say Grandpa has a serious illness and could die soon. They dont know when.

How can I help Grandpa?

Grandpa still loves you very much and I know you love him. You can make a picture for him, say a prayer, or go visit him if you like.

Ill make a big heart with I LOVE YOU on the bottom. Will I get to see Grandpa again? Where is he?

Yes, you can visit Grandpa if you would like. You can bring him the big heart you made. He is in a place called a hospice.

What is a hospice?

A hospice is a place where helpers work with Grandpa. They are helpers for people who are very, very ill and are not expected to get better. They make it easier for Grandpa to feel the best that he can.

Some are doctors, nurses, and aides that care for him, give him medicine, and help him feel comfortable and not feel pain. Other hospice people are volunteers who listen and talk with Grandpa to keep him company. Some are social workers that answer questions for Grandpas family and friends and help them share stories about Grandpa. There might even be a hospice dog to pet.

Can I say goodbye?

Yes. That would be nice for you and Grandpa. Let me prepare you for what you might see and hear. Grandpa might not look the same. He may be thinner than the last time you saw him. He may not talk, but he still knows you are there. You can touch him, kiss him, and tell him you love him. You can bring him a present too. You dont have to stay long. You can leave whenever youre ready.

He may be weak and even cry. He may be getting some medicine through his arm. You dont need to be afraid. It is still Grandpa. You love him and he loves you. You can give him a hug too if you want to. Do you have any questions?

Can I bring flowers with my I LOVE YOU heart?

Of course you can. You can pick Grandpas favorite color flowers. It feels good to bring something special.

I sat on Grandpas bed and held his hand. He smiled at me and I smiled back. Then I squeezed his hand, said I love you, and decided to leave. Was that OK?

That was perfect. You got to be with Grandpa and say goodbye and bring him special gifts. Remember, if you have any more questions about Grandpa, you can always ask me.

Jarrett (12): a case study

Jarrett loved Uncle Adam. They would hang out a lot together, going to the cinema, eating ice cream, or even skateboarding in the park. Then Uncle Adam got ill. Mom and Dad would whisper about his illness, but Jarrett caught a few words like AIDS and terminal. He didnt know what these words meant but he did know his parents were worried. Uncle Adam began losing weight, sleeping a lot, and not visiting much. He didnt seem the same.

Whats wrong with Uncle Adam? Is it my fault?

Your parents have talked to me about Uncle Adam and shared their concern for him and why he is so sick. Uncle Adam has AIDS. AIDS is a serious disease but it is difficult for children to get it. When he seems so tired or angry or sad or irritated, it is part of having AIDS. It is not your fault. He is very ill, and might not live long.

What is AIDS?

AIDS stands for Acquired Immune Deficiency Syndrome. A rare virus called HIV weakens the healthy cells or immune system causing AIDS. The immune system keeps the body healthy. When it cant protect the body, infections and cancer can occur. People can live with AIDS for a long time. Medicine and treatment can help to kill germs, stop infections, and fight the virus. Thats whats happening to Uncle Adam.

Why is it a secret?

Sometimes people are ashamed or embarrassed if they have AIDS and keep it a secret - thinking only a certain type of person or group can get AIDS. But this isnt true. Anyone can get AIDS. They can be rich or poor, African-American or white, old or young, Asian or Hispanic. There is a shame or stigma that may go along with having AIDS, but people dont get AIDS because of who they are; they get AIDS from contact with infected blood or having sex with someone that has AIDS.

Can I catch it?

You cant catch AIDS like you can catch a cold. You cant get AIDS from eating with someone, coughing or sneezing, swimming or playing sports, toilet seats or touching. AIDS is a sexually transmitted disease and you can get it through contact with someone elses infected blood.

What does terminal mean?

Terminal means the doctors think the person will die. No one knows when, but it means they are very, very ill. Thats what the doctor said about your Uncle Adam. His illness is very serious and the time you can spend with him is precious.

Concluding thought

Too often children overhear whispers about an ill family member and imagine what is or what will be happening instead of knowing the facts. Adults may shut them out of difficult conversations because they dont seem to have the right words or fear it is inappropriate to include them. This only creates isolation for the child and wondering about what is really occurring in their family. Explaining what the illness is, how they can help, and words like hospice and terminal can prepare children for the future and give them permission to participate in the present.

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