How Children Understand Illness and Death

Children of different ages deal with illness and death differently. It’s important to consider the child’s age when deciding how to talk about coping with sickness and death. Here are general guidelines for when the loved one who is dying is a parent but can also be applied for other loved ones. These suggestions can help you and the other adults in their lives decide how to best approach each of your children.

Infants or very young children

Infants and children under the age of 3 don’t understand death in the same way adults do. Still, they need to be told that the parent is very sick, but not with something that you get over, like a cold or sore throat. The goal is to take advantage of the time the parent has left with the child. It’s also important to try to keep the child’s routine as normal as possible so that they feel loved, safe, and cared for. It helps children to know that Mom or Dad will be in bed more as death nears and won’t be able to play or even talk much. Remind them that it doesn’t mean that the parent is mad or doesn’t love them. Gentle cuddling, hugging, or holding hands may be possible.

Answer any questions the child asks as honestly as possible; in words they can understand. As the child gets older, they’ll be able to understand in more detail what happened with the parent.

• Have a parent or trusted adult who is a regular part of the child’s life spend time with the baby or child daily.
• Keep the baby or child near the parents or regular adult caregiver if possible.
• Get your relatives, nanny, or day care providers to help keep the baby’s or child’s routine.
• If a parent must be away for care (in the hospital or inpatient hospice), caregivers can use video, phone, and other means so the child can see and hear them in real time.
• Record lullabies, stories, and messages for after they are gone.
• Cuddle and hug often.
• Talk with the team social worker or nurse about your own emotions in dealing with your child’s distress.

Children ages 3 to 5

Generally, children younger than 5 are not able to understand that death is permanent and that everyone dies. Children at this age may expect someone who has died to come back. It often takes time and growing up for them to realize that the parent they loved will not return.

When death is very close, the child should know that soon the parent will die. Help them understand by using phrases like, “Soon their body won’t work anymore.” “They won’t feel or breathe anymore.” or “Their heart will stop.” If you say things like “Mommy will go to sleep,” the child will realize at some point that Mommy didn’t wake up. Children told these kinds of stories can become afraid to go to bed at night – it’s important to tell the truth and use the right words.

Some ideas for talking with children in this age group:

• Give very simple explanations of what’s happening and repeat them often.
• Check on the child’s understanding of what’s happening. Remember that the child may be able to say back to you what they heard the first time or two, but this doesn’t mean they understand it.
• The child will probably show more fear and anxiety when away from the main caregiver. The child will need a consistent substitute caregiver when the main one can’t be there and will need to be assured that they will always be cared for.
• Get your relatives, nanny, or day care providers to help maintain the child’s routine and provide daily care. Be sure the caregivers know about the family situation.
• Have a parent or trusted adult who is a regular part of the child’s life spend time with the child every day.
• Offer choices when possible.
• Do not tolerate biting, hitting, kicking, or other aggressive behavior. Teach the child how to express feelings in other ways.
• Teach acceptable expressions of angry feelings such as talking, drawing, or pounding a pillow (things that don’t hurt the child or other people).
• Encourage doll play and other play to rehearse or repeat worrisome or painful experiences or ask the child to draw pictures about mommy or daddy. Use play and artwork to help the child understand what’s happening in the family,
• Create opportunities for physical activity.
• Plan short visits with fun activities that include the parent. Be sure that the child understands which of the usual things they cannot do. Laugh together when possible.
• When the parent must be away for care (in the hospital or inpatient hospice), caregivers can use video, phone, and other means so the child can see and hear their parent in real time. Arrange in-person visits when possible. Explain any differences in how the parent looks or sounds ahead of time
• Give simple explanations for crying and sadness. For example, “I just feel a little sad and a little tired today. It makes me feel better to cry and get it all out of my system. Now I feel better.”

Children ages 6 to 8

Children this age are better able to understand death, including that death is permanent. Some children may see it as a monster, ghost, or some other such creature. Death often takes the form of an outside person who can come to catch them and if they run fast enough, they can escape. Children in this age group worry about monsters under the bed, witches, or devils, and it can be hard to reassure them that such creatures don’t exist. They may also think that the other parent or another loved one could have prevented the illness or death from happening.

Children at this age may come up with their own explanations of things, like why a sick parent won’t play with them (“Mommy doesn’t love me anymore because I told her I hated her.”) It’s important to explain changes right away. (“Mommy can’t play with you because she’s sick. She loves you a lot and still wants you to have fun.”) Once children believe their own interpretation, it can be hard to change their minds, and it requires lots of repetition and reinforcement.

Be patient trying to convince a child that a parent has really died. Don’t be hard on yourself if it seems like you can’t get through a child’s normal defense against such a difficult reality.

Here are some tips that may help:

• Keep the child up to date about the parent’s illness and treatment and be sure to explain what the child sees and hears. You may need to keep repeating this information.
• Prepare the children for bedside visits and explain what they will see. Give more information and offer time for questions after.
• Answer all questions honestly, including, “Will Mom (or Dad) die?” Get help from the social worker and cancer care team if needed.
• Listen for unasked questions and pay attention when the child talks about fears and concerns.
• Encourage and help youngsters to identify and name feelings.
• Encourage expressing and talking about feelings, especially anger, and safe ways to do it.
• Teach the child what anxiety feels like and how to manage it.
• Assure the child that it’s OK to be upset, sad, anxious, or angry and that their parent still loves and cares for them.
• Tell the child when death is getting close and let the child visit and be with the parent. Describe the parent’s condition and make suggestions as to what the child might say or do. Just touching the parent can mean a lot to the child. Tell the child to focus on an area of the body that looks the same (such as hands). Tell the child to talk to the parent and tell the parent about his/her day.
• Find out if the cancer center has special groups for kids with cancer in the family.
• It’s OK for the child to see the parent cry or be angry if the child understands that they’re not to blame for these feelings. Try to help them understand that it’s normal to have strong feelings and it’s good to express them.
• At least one adult should give the child permission to ask them questions and express feelings that the child thinks might upset others.
• If parents have trouble listening to the child’s distress because of their own, get family, friends, social workers, or other professionals to help talk with and listen to the child.
• If a child is having trouble in school, explain that it’s normal for school performance to suffer a bit when a parent is in the hospital, and you are not upset with them.
• Tell the child that it’s hard for everyone in the family, but that you are there for them.
• Assure the children that this is not their fault, they didn’t cause the cancer or the death.
• Tell the child’s teachers, coaches, and other school staff about the family’s cancer situation.
• Arrange for the child to stay in school and keep other activities on schedule as much as possible.
• Set up regular substitute caregiving when the parent is away or unavailable.
• Remind the child that it’s normal for them to need play time and time to be with their friends for games, sports, and other activities that they enjoy. It’s OK to still be a kid!
• Arrange for one family member or trusted friend to take a special interest in the child.

If the child shows severe anxiety, becomes fearful, is afraid to go to school, blames themselves, acts depressed, or shows low self-esteem, consider an evaluation by a mental health professional.

Children in this age range want reassurance that their parent loves them. Some want to hug the parent or hold their hand. Some are comforted by exchanging gifts or cards with the parent. These small gestures can become treasured memories for the child.

Children ages 9 to 12

Children this age may have feelings of sadness and loss during terminal illness and after a parent’s death. They may even feel embarrassed about their outbursts of strong emotions. They can understand more about serious illness and the finality of death, if they are given clear information all along. This doesn’t mean that the child won’t fantasize about Mom or Dad coming back from death – this is normal. But if given simple explanations about death, they will, with time, understand that the parent will not come back from death and that death is permanent. They’ll also understand that all living things die.

The child will need concrete, basic information about the parent’s illness and treatment to understand what’s going on. Understanding comes slowly, over time, when the truth has a chance to sink in and the child can more easily tolerate the loss.

• Tell the child as much detail as possible about the cancer and what to expect and what the parent may be feeling (for example, weaker, have trouble eating, or sleep a lot). If possible, use pictures from children’s books about cancer, and for older children, science books about the human body. Explain what the child sees. Answer questions honestly.
• Assure children the illness is not their fault.
• Let the child spend as much time with the parent as possible. Suggest topics to talk about. If the parent is in a hospital or inpatient hospice, it’s helpful if children this age meet medical and nursing staff and explore the facility a bit.
• Keep the child up to date on how the parent looks.
• Help the child stay involved in after-school activities, sports, and keep him or her in contact with friends. Remind the child that it’s OK to have fun.
• Tell the child’s teachers, coaches, and other school staff about the family situation.
• Let the child help if they are interested in helping with the parent’s care, but keep in mind that the child shouldn't oversee the parent’s care.
• Assure the child that it’s OK to be upset, sad, anxious, or angry and that their parent still loves and cares for them.
• Encourage expressing and talking about feelings but allow the child to keep their feelings private if that’s what they prefer.
• Encourage the child’s interest in reading or writing about cancer or its treatment and their responses to the parent’s illness (if they want to do this).
• Arrange for one family member or trusted friend to take a special interest in the child.

Teens

Teenagers have an adult understanding of death but might not have adult coping skills. They may have a particularly tough time with the loss of a parent. This is easier to understand if you keep in mind what a teen needs to accomplish in growing up. The major task of the teen years is to achieve a separate identity from their parents and discover themselves as young adults. The struggles that go on between parents and teens are a normal and necessary part of gaining a new identity.

Teenagers often behave in unpredictable ways – one day they feel independent and the next they retreat into the safety of childhood. As every parent of a teenager knows, it can be a delicate balancing act between giving a teenager enough independence to learn and experience the world while trying to protect them from what they’re not yet mature enough to handle. These struggles go on in every household.

Teens are old enough to know that their lives will greatly change due to their parent’s illness and death, and they struggle to deal with this threat. They may cope in ways that are hard for parents to understand, such as refusing to talk about the illness or trying to take control. Others may adapt, try to get closer to parents, and/or try to restore order to the home.

As the parent gets sicker, the teen may want to sit with them for short times each day. Some teens may want to be as far away as possible from their sick family member and thoughts about their death. Most want to spend time with the parent, but still have some time to be a kid. It’s OK for the teen to help, but they should not oversee their parent’s care.

Some tips on helping teens:

• If they are interested, give teens details about the parent’s condition, symptoms, possible side effects of medicines, what they might expect in the next few days or weeks, and other information.
• Keep the teen up to date with what’s happening with the parent’s treatment. Answer all questions honestly, even as death approaches.
• Let the teen spend as much time as they like with the parent, if possible. Suggest topics to talk about.
• Explain that even though the parents have less time and energy for them, they still love and value them.
• Tell the teen’s teachers, coaches, and other school staff about the family situation.
• Discuss any spiritual concerns related to illness, death, and dying.
• Try for as normal a life at home as possible.
• Don’t expect the teen to take on caregiving and other difficult tasks. Talk with the cancer care team about your family situation and see if you can get other help.
• When possible, let the teen have a voice in where to go after school and in whose care they prefer to be when a parent can’t be there.
• Be sure teens know that having fun and spending time with friends are important parts of their lives, and there’s no need to feel guilty about it.
• Encourage teens to keep up their usual involvement in school and other activities.
• Ask a relative or trusted friend to take a special interest in the teen.
• Address feelings of anger and frustration (even if they are unspoken).
• Being willing to tolerate some reluctance to share thoughts and feelings.
• Teens may try to protect parents by trying to hide their sadness, anger, or fears. Check in with teens often and let them know that everyone has feelings that can be confusing and overwhelming. Tell the teen it’s OK to ask you questions and express feelings that they think might upset others.
• Encourage your teen to keep a journal or log.