Children and young people close to someone with an incurable illness

Children do not need to be wrapped in cotton wool – they need to be surrounded by safe adults with whom they can face any worries they come across in life. When facing a crisis, there is no need to spend your energy on creating an illusion for a child, pretending that everything is all right. Instead, it’s better to discuss the situation with the child in an honest way, ensuring safety and comfort even when the situation is difficult.

News about illness, or changes in the stage of illness or treatments, often come as a shock. Unless it’s urgent, the adult can take a moment to process the news in private, in order to be there for the child while sharing the news with them. However, postponing the conversation means that the child has less time to anticipate and adapt to any changes and to get the support they need.

When talking to a child, it’s important to be honest and use words that the child can understand. Break the news into appropriate-sized pieces according to the child’s age level, a little bit at a time, preparing to go back and repeat things again and again. Children need words for what they can see and hear, as well as for changes affecting their life in concrete ways. Especially with small children, explanations that work can often be very short as long as they are understandable: “Right now, Daddy is so sick that he’s being treated in the hospital. Grandma’s going to look after you today, while Mommy’s in the hospital with Daddy”; “Mommy’s lying on the sofa because her tummy hurts, but hopefully the medicine will make her feel better soon”.

Talk about what is and isn’t going to change for the person with the illness (for example: Will they still be going to work or school? How can you spend time with them? What can they currently do? Is their appearance going to change?) and for the child (for example: Can they still go to day care or school? Can they participate in hobbies, or visit friends and relatives as before?). It’s good to include practical observations in the conversations and show an interest in the child’s views, feelings, and thoughts.

• “You’ve probably noticed that your mother / father / grandmother hasn’t been able to take you to your hobby

  / eat on their own / get up from the sofa / has lost weight (or any other concrete change that the child is able to observe). Why do you think that is?”

• Encourage the child to ask questions and to say what’s on their mind. “What do you think about your mother’s / father’s / sibling’s / grandparent’s illness?”, “How does it make you feel?”, “Although your mother’s illness is a sad thing and it might make me cry sometimes, I want you to know that you can ask me questions or tell me how you’re feeling whenever you need”. However, children might not want to talk at the precise time that the adult thinks would be right – interrogation rarely works in helping a child open up, but it’s important for the child to know that they have permission to speak. If the child initiates a conversation but you’re unable to talk at that moment, thank the child for bringing up the topic and tell them when you’ll be able to talk.

In addition to factual information, children benefit from being able to name and share their feelings. Being close to someone with an incurable illness raises all kinds of difficult and painful emotions. These are normal reactions to a significant event. Receive and accept the child’s emotions as they are. The child does not need to feel a certain way, and there is no need to try and “solve” the emotions or get rid of them as soon as possible. All emotions are allowed, for both adults and children, and will eventually pass. At the same time, it’s worth bearing in mind that not all actions are allowed, and that there are limits that should be maintained: you’re not allowed to harm yourself or others.

The parent’s behaviour provides a model for how to act when facing adversity and how to cope with feelings. The child is given a model for how to process grief – is it an emotion that you can share and express, or something dangerous or unwanted that needs to be hidden away? It can be especially problematic for a child if an adult has uncontrollable emotional outbursts or sends mixed messages (for example, a child sees that an adult is crying, but the adult doesn’t give a comprehensible explanation for why they are crying and says that everything is fine).

It’s helpful for a parent to name emotions and give words to what they’re about: “I feel like crying because x got sick“, “I’m really angry, upset, and disappointed that we had to stop chemotherapy, but it’s not your fault”. “I’m sorry I snapped at you, I’m really nervous about the doctor’s appointment tomorrow and that’s why I’m more touchy than usual. I’m going to take a deep breath and try to calm down a little”, “How does it make you feel that Mommy no longer has hair?”

However, it’s not a good idea to share adult fears and worries unfiltered, even with a teenager; you should process them with another adult first. It’s advisable instead to ask children about their worries and fears, and to pay close attention to what is said between the lines and in unspoken gestures.

Make sure, and don’t assume, that a child is aware of the following, even if they don’t bring them up:

• Guilt: the child didn’t cause the illness, no matter what they did, said, wished for, or thought. When the illness is making the parent sad, worried, afraid, tired, or angry, it’s not because of the child.

• Fear of contagion: tell the child whether or not the illness is contagious. Discuss how the child can be close to the person with the illness, as well as anything they need to take into consideration.

Nurture feelings of safety:

• Tell the child about what is being done to help the person with the illness: “Doctors and nurses are doing everything they can to slow down the illness / to make your mother / father / grandfather feel better”, “There are grown-ups looking after your mother / father / sibling / grandmother. You’re being looked after too.”

• If the child’s mother / father is unable to carry on with everyday life as before, who’s going to help? Identify the adults in the child’s life that can help the child and the family in different ways. Older children and teenagers may be able to take a bigger role in things such as household chores, but they can’t be made to take on adult responsibilities for keeping the family going.

When faced with death, we as adults are often confused, and it may be difficult to find the right words. Children, on the other hand, are only just learning the meaning of death based on observations from their surroundings. Children under school age are often very frank and direct when reflecting on issues related to death. At school age, when a child begins to have the understanding to fathom the finality of death, the theme becomes more emotional in nature. Young people’s understanding of serious illness and death is quite realistic.

If the child doesn’t bring up the topic of death, it doesn’t mean that they’re not thinking about it, or that they are not afraid. It might mean that the child has sensed the topic to be painful and off-limits, or that the child is too afraid to bring it up. It’s good to keep in mind that a school-aged child often has a lot of information from sources such as friends or the internet that their parents are unaware of. At worst, the child might constantly be watching for whether their parent or sibling is dying, because they’re unable to trust that other people will tell them the truth. In such cases, it may help the child to hear that their mother / father / sibling / grandparent is not dying of their illness right now, but that if or when that happens, other people will let them know. In the case of teenagers, you can also ask them directly how they would like to be informed about any changes.

When you learn that the moment of death is near, you should let the child know. Losing a loved one is even more painful if you haven’t had the chance to prepare for it. In the best-case scenario, the child has already been informed about the illness beforehand; this makes it easier to take in new information.

The child’s age and developmental level play a key part in what to say and how to talk about death. Some general advice for telling a child about their parent’s / sibling’s / loved one’s passing:

• Set aside some time without interruptions and make sure that the location is quiet. Ask your spouse, partner, or other adult close to the child to accompany you. You can also ask a professional, such as a nurse from a palliative care unit, a social worker, a professional specialised in psychological support, or a hospital chaplain, to join you.

• Begin by talking about what the child thinks is going on: “How do you think the person with the illness is doing right now?”. The child has probably noticed various signs that the situation is getting worse. “What kind of changes have you noticed? What do you think they mean? Are you scared about your mother / father / sibling / grandparent dying?” Don’t assume – ask questions and listen.

• Tell the child that the situation has changed from what it was before. If the child previously believed that the treatment was going to cure or slow down the illness, tell them that unfortunately, this is no longer the case, even though everybody wanted the person to get better. “The medicine / treatment is no longer working, and it can’t make the illness go away / stay away. The illness is going to get worse, and the person’s body can’t work as it should anymore. In the end, the body is going to stop working altogether, and the person is going to die.”

• Even though euphemisms might feel easier, you should use the actual words for what you’re talking about. For example, talk about “dying” instead of “resting peacefully” or “going to sleep”.

• Talk about how life will still go on after the child’s mother / father / sibling / grandparent has passed away, as well as who’s going to look after the child, any arrangements that need to be made concerning the child (for example, if they will have to move), and where the family can find support. The child may be relieved to hear that although the grief is heavy and will remain a part of life for a long time, they will keep growing and moving towards adulthood, and there are happier times ahead.

• Ask the child what they think about what you’ve told them and how they’ve interpreted the things you have talked about.

• Encourage the child to talk or ask questions whenever something related to the topic occurs to them. A child’s questions may be very concrete in nature:

  • Where is the dead person going to go? Will they be cold in the casket? Can you call someone after they’ve died?

  • Is the family allowed to live in the same home? Can they still go to the amusement park in the summer, or can they still do [specific activity] without their mother / father / sibling / grandparent?

  • The child may keep asking the same question over and over again, hoping for a different answer. Be patient and keep giving the same answer – the child’s mind is trying to adapt to the new information.

  • If a child’s question upsets you, try to thank the child for asking the question regardless. You can say, “That’s an important question – let’s talk about it some more once I’ve had time to give it some thought.” “I don’t know” is also a good, acceptable answer.

• After having the conversation, it’s good to move on to do something else, like an everyday activity or something you enjoy: maybe watch a film together, play a game, read a book, draw, or do something else that stabilises you.

Children react in their own unique ways. This can mean disbelief, grief, disappointment, anger towards the person who is ill, confusion, or acting as if nothing has happened. Come back to the topic later on to see what the child took away from it, and be prepared to have the conversation again.

The younger the child, the more difficult it is for them to understand the meaning and finality of death. Instead of the concept of death, it might be easier to understand that the body stops working.

• When a person dies, it means that they can no longer talk, and you can’t see them or do things together anymore. Once someone is dead, they can’t come back. However, those close to us will always remain in our hearts, memories, and minds, and in photographs.

• When a person is dead, they no longer feel, see, or hear anything. The dead can’t feel pain. The heart stops beating, and the person doesn’t breathe anymore. Make a clear distinction between sleeping and being dead.

• Come up with concrete examples of death that the child can understand. Has the child previously experienced the death of someone they know, or a pet? Or is there someone who has passed away earlier, but the child has heard others talk about this person and knows that you can’t meet this person anymore, even though you can talk about them and see them in photographs? You can also help the child understand by using a dead insect, worm, or animal you’ve found outside as an example: the dead can no longer move or come back to life.

• Story books and age-appropriate television shows or films are good ways to help the child understand and process the issue. For young people, blogs and social media content may also serve as valuable support.

It’s natural to want to protect a child and try to shield them from pain. By avoiding a difficult topic, we’re also trying to shield ourselves from the pain we believe the topic will bring to the child. How we talk about difficult things is shaped by our own experiences of how others have brought up difficult topics with us during our life.

Despite the difficult emotions involved, we can make the decision to talk, provide information, and ask the child about their thoughts, worries, and fears, because this is the key to helping the child cope better in a challenging situation. The conversation doesn’t have to be perfectly thought out, and the adult doesn’t need to feel perfectly calm in order to get started. There are no perfect words, nor is there a perfect moment – instead, even clumsy efforts are often helpful, unlike avoiding the topic. Contrary to what the adult might expect, talking about what’s happening is often a relief from the child’s perspective.

Maintaining an open dialogue and talking about things together promotes the child’s normal growth and development going forward. Other things that support the child when facing changes include everyday activities, going to day care or school, having meaningful hobbies, and spending time with friends.

It’s a good idea to inform those involved in the child’s daily life about the situation in the family. This could mean early childhood education and care, school, hobbies, and the parents of the child’s closest friends. This frees the child from having to hide the situation, and gives them the opportunity to get support from outside the family as well. In the case of school-aged children, and especially with teenagers, it’s good to have a discussion about how to tell others (who’s going to tell, who is being told, what is told and when).

Children can be involved in their parent’s or sibling’s hospice care throughout the process. In the case of planned hospice care at home, hospice care professionals from home hospital services, a hospice care unit, or a hospice are there to support the family.

Ways to help children prepare for the death of a loved one include concrete advice about how to spend time with their parent or sibling despite the illness and approaching death. You can also talk about what happens when a person dies. Let the child decide whether or not they want to be present during hospice care and at the moment of death. If the child wants to know where their loved one is held before the burial, let them know.

Children process grief in their own ways. When it comes to children, dealing with loss often doesn’t involve speech or big words. Instead, they may express their grief through drawing, playing, writing, or music. It’s important to give space for grief, but it’s equally important to give space for life and joy.

Children largely live in the moment, and while they are dealing with the illness or death of a loved one, regular everyday events are often very emotional as well. Give the child time to think about what they’re experiencing at their own pace. Sometimes a child’s grief reactions or questions come up after a lot of time has passed. It’s good to keep in mind that when working to comprehend the death of a loved one, a year is a very short time. As the child grows and their understanding develops, they may well want to hear more details about what exactly happened and how their loved one died. If the child was very young at the time, it’s also important to keep in mind that the image they have of their loved one is based on stories told by others, and on cherished memories.

The experience of losing a loved one is unique. It leaves a lasting impression on the child’s mind. We are able to contribute to what this impression will be like.