Supporting Children When Someone They Love Has a Serious Illness Part 1 – What All Children Need

In honor of National Children’s Grief Awareness Day, we’ll be posting a 6 part blog series from our anticipatory grief booklet to help support children by sharing coping tips.

Everyone in a family is affected when one family member has a serious illness.   All are dealing with the unknown and must use strengths they didn’t even know they had. Most of us haven’t been taught how to manage when someone we love is very ill, let alone how to support children and teens during this time.  Yet time and again, parents and caregivers find the strength within themselves and learn new coping and parenting skills along the way.

Our blog series describes how a child’s age affects the way they understand and react to changes in the sick person, in you, and in themselves.  In addition, it offers suggestions about how to talk with your children and ways to help your children prepare for the death of a loved one. 
As you read these posts, keep in mind that you are the expert on your child. What works for one child doesn’t necessarily work for another.  Learn from the experts, but also trust yourself, your child, and your instincts.  We hope you come back to these posts again over time as you travel this journey. And remember that the Grief Support Program at Hospice of Santa Cruz County are here to answer your questions and support you along the way.
Hospice of Santa Cruz What Children Need When Loved One is Seriously Ill
What All Children Need
Gentle honesty
Telling children the truth as soon as possible helps them to trust and feel a sense of safety.  Start by explaining what is happening in simple terms. For example, “Grandma has a sickness that makes her body tired and weak.  Usually when people are sick, doctors and nurses can help them get better.  Her sickness is different because the doctors don’t think that she will get better.  She may die because of this sickness.”
Give children time to absorb what you have told them. Encourage them to ask questions if they are unsure or upset about anything. The words that you use don’t have to be perfect.  You will find your own caring words.  Try to talk with your children in a comfortable, familiar place where you can be together for a while. It’s best not to talk before bedtime, as they may need some play time after this conversation. 
Don’t shy away from using the words “dying” and “death”. Children can be confused by terms like “going away” or “gone to sleep.” Those words may create fear that loved ones won’t come back when they go away on a trip or won’t wake up when they go to sleep.  When you talk about the illness, also remind your children how much you love them. Let them know that there are people who can help your family if needed. This helps children feel safe and cared for during a tough time.
It is okay to cry when you talk with them.  They might cry too. It might be good to have another adult with you to support you when you talk to your children.  Remind your children it is not their job to make you feel better and that you will be okay. 
Being honest doesn’t always mean telling everything you know. Younger children need less information with fewer details. Older children may want more facts. The kind of information children need varies with their age and personality.  Ask “What do you think?” as you talk with children. This will let you know when they need more help understanding what you have told them.
Information at the child’s level  
Tell your children the name of the illness and, to the best of your understanding, what may happen as the illness continues. Use honest words like heart disease, cancer and Alzheimer’s disease.  When not given truthful information, children can feel like they’ve been forgotten or lied to. They may also make up their own stories about what is happening. Honesty from you will help them cope with what is happening. 
Encouragement to ask lots of questions
Children of all ages have many questions. Encourage them to ask questions about anything they are unsure about or feel troubled by.  Answer questions honestly, keeping the child’s level of understanding in mind. Keep your responses short and to the point.  Children understand illness and the dying process little by little. They may ask the same questions over again and it will reassure them when they hear the same information again and again.  It’s also okay to say “I don’t know”, if it is true.  
Children may only be able to take in a little bit at a time – and you may only be able to talk about it in brief spurts.  That’s okay.  Coming back to the topic later actually helps children digest it in their own way.  Leave the door open for ongoing conversation.  Regular updates that fit the child’s age and level of understanding can help them trust.
Examples: 
After providing an update:  “I just gave you a lot of information and used some words you’ve probably never heard before. I’m thinking you might have some questions.  What are you wondering about right now?”  
“We’ve decided that we’re going to have family meetings every Thursday night so you can ask for the latest information about this illness.  Of course, you can ask any question that you have at any time, but we wanted to make sure to save special time to talk as a family so we don’t get so busy taking care of things that we forget to talk with one another.”
“Anything you want to ask about Grandpa?  Whenever you are ready, we’ll talk.”
A chance to share feelings
It’s normal for children to feel all sorts of feelings, including sadness, anger, guilt, confusion, frustration and fear.  Children often feel anger followed by guilt.  They can be helped to express their anger safely with activities such as pounding on pillows or throwing a ball at a target.  Sometimes children don’t yet have words for their feelings.  Sharing your own emotions can be a model for them and reassure them that others also have these feelings. It’s good to remember that many times children express and show their feelings through art and play rather than just talking about how they feel.
Reassurance that nothing they did caused the illness
Children make sense of the world from their own point of view, based on their age and ability to understand.  They may think that something they did or said caused the illness.  They may see the person’s illness and death as a punishment for something bad they did.  They also may believe that they can keep the person from dying by promising to be good.  Children, especially young children, need to be reassured that nothing they did or said and nothing they will do or say is connected to the illness.
Time to play
Playing hard, laughing, and being with their friends can give children a needed break as well as reassure them that their life will continue.  Give them opportunities for play and art. This helps them express themselves at their own pace in the way most familiar to them.  Because children learn through play, they may act out medical scenes or want to have a funeral.  A medical play kit allows a child to act out medical scenes.  During pretend play, going along with the child’s pretend scenes can help you get an idea of anything they may be missing or not understanding about the illness. 
Keeping routines as much as possible 
Children find comfort in their normal activities and schedules.  They feel safe when their world is predictable and they are surrounded by caring family and friends.  Try to keep routines as normal as possible.  Let them continue with their out-of-school activities if possible.  Have a trusted family member or a friend that your children are comfortable with help out with driving if needed.  Try to have regular meals and a consistent bedtime.
Take care of yourself
If you are also a caregiver, take care of yourself as you balance the needs of the ill person with those of children.  It is okay and normal if sometimes the children’s needs take a backseat to the needs of the parents.  Find time to take care of yourself in the ways that help you rest or recharge. This may be through exercise, talking honestly to friends or family members, creating art, meditating, going to church, etc.  Many adults, as well as children, are helped by counseling during this time.