Talking to children if you are not going to recover...

It is important to balance hope with reality. A time may come when the reality is that you are not going to recover. In many cultures death and dying are not talked about openly, and it will be difficult to face the knowledge that you are going to die. It will be difficult for your family and children too, but facing it together and allowing them to be part of that process is likely to help them look ahead to the future and will help with their recovery from grief.

Being prepared Back To Top

The more prepared you are to talk about what is happening, the more at ease you are likely to be when discussing it with your children. If you find that you cannot talk about it, there are other people who may be able to help such as:

• a trusted family member
• a friend
• your family doctor
• a specialist nurse at the hospital
• a counsellor
• a religious or spiritual person who knows your family and your values, and who your children know and trust.

Children often know much more than we imagine, and need to be given permission to talk about it. We need to speak in a language that they will understand, avoid jargon and use open, honest, direct communication. It is best to answer questions at the level that the child has asked them, using similar language and avoiding technical terms.

Even more importantly, we need to listen. Sometimes children may use symbolic language. For instance, 'I'll stay here and look after you' might mean 'I'm frightened to be on my own.'

The information on the previous pages of this section applies equally here. However, there are other considerations:

• What are your priorities?
• How do you want to spend your time?
• How might your children be involved?

You may not feel well or strong, but that might not matter too much because it will be the quality of time rather than the quantity that your children are likely to remember.

Maybe your children can help to look after or care for you, even if it is just bringing you something such as a drink. Without overburdening them, you can help them feel included and special if they can do small things for you.

If you are able you may like to do things together|.

Children learn about solitude, intimacy and companionship by being quietly in someone else's company and doing activities such as reading, drawing, sewing, or making things, without necessarily needing to talk.

Some questions your children may ask Back To Top

What about me?

What will happen to me? Am I going to die too? Will other people I love die too?

What about you?

Will I see you again? What happens to your body? Where do you go? Does it hurt? Why does it have to happen? Is it a punishment? Is it my fault?

Will I get cancer?

It may help to anticipate questions and to think about how you want to respond. There is no one right way – it will depend on your philosophy of life and beliefs. However, perhaps what is most important is that your children feel able to talk about their concerns and questions, and their feelings are taken seriously

Some answers you can give Back To Top

In answer to: 'What will happen to me?'

You could say something like…

'Daddy/Mummy/Granny etc. will still be here and will look after you. Daddy will take you to school and Auntie Jane will collect you after school and you will stay with her until Daddy comes home and collects you. Uncle Tom will take you to swimming/football/etc.'

Children need very specific answers to this question. They need to know where they will live and who with, and who will do all the things you have been doing for them.

'Will Daddy/Granny die too?'

'Everybody has to die at some time, but Daddy/Granny is healthy at the moment and there is no reason to think that he or she will die soon.'

'What about you?'

You may feel uncomfortable talking about your death with your child. Many parents find this too painful. If you feel like that, you can ask a friend or a professional who knows you and your child – possibly a teacher – to talk to your child. The chosen person must be someone that your child has confidence in and that they already have a supportive relationship with.

The main thing to remember about telling your child is that they need clear, simple, truthful information repeated as things change. Even if the situation has not changed, younger children often need the same information to be repeated several times. They may ask the same question over and over again, and it is important to answer as often as the child finds it necessary.

Other things you could say Back To Top

'It's no one's fault. Nothing you did or said made me ill.'

'Cancer is not catching. Most people die when they are old and their bodies get worn out. It is very unusual and very sad for someone young to be so ill that the doctors cannot make them better.'

'Although Daddy is dying, we will stay together as a family; we will look after one another. Daddy's love will always be with us.'

Children need to know what will change in their family life and why, and the reassurance of knowing that some things will stay the same: 'We will still go to the football match on Saturday.'

It can be helpful to use very direct, simple explanations such as:

'When someone dies their body is no more use to them. It is an empty shell. It cannot feel pain, happiness, hunger or sadness. A dead body has stopped working for ever. It is not like being asleep. A dead body cannot wake up again. A dead body is usually put in a special box called a coffin and either buried in the ground or burnt in a special place called a crematorium. This is known as cremation.'

'A funeral is a time when everyone who knew Mummy will get together to remember her. Some people will cry. Everyone will think a lot about Mummy. People may read poems or parts of books that mummy liked, or that remind people of her. We will play Mummy's favourite music. Uncle Tom will talk about Mummy. You can choose a poem to be read if you would like to.’ There will be special prayers/chants/spiritual practice/meditation and hymns/songs.

'Everyone is very sad that Daddy is dying. Sometimes it makes us all feel very angry too. It seems so unfair. It is no one's fault. It is because of Daddy's illness.' It is normal for us to feel like this.

Euphemisms for death can be very frightening to a child. For example, if you say that you will just go to sleep, they may become terrified to go to sleep in case they die in the night. If you say that the dead person has 'gone away', and the child has not seen the body, he or she may think that the person has just left, which can feel like abandonment. Although it can be difficult to do, it can be clearer and less confusing for a child if you use precise words such as 'When I die'.

It can be very difficult to describe to a child exactly how someone will die, as no one can ever predict exactly when it will happen. Children need to have gradual explanations about what has happened and why, and what may happen next. When death is very near, children may need to know that: 'We don't think Dad will live much longer now.' 'We think he will be weaker each day.'

Older children may want to know something about how death will happen and may be reassured to know that 'Dad will become more deeply unconscious. His breathing will get much slower, with big gaps between the breaths, until eventually it stops altogether. Dad's heart will then stop beating. It is usually quite peaceful.'

Our section on dying with cancer| gives a description of the process of dying, which you may find helpful to read.

Afterwards Back To Top

You can help your child to face life afterwards by preparing them for the future without you.

Some people write a letter for their children to read when they are older. Some people find it helpful to collect mementos together in a memory box or scrapbook. This can be a very positive thing to do, but can also be a very painful process: some people describe it as bittersweet.

A letter is a way of telling your child more about you, your feelings and hopes for them. Sometimes people want a letter or memento to be given to their child on a particular occasion, such as a birthday. It may help to know that you are leaving a message of love and good wishes for your child's future.

Children can be involved in the funeral and older children can make choices about their part in it. Perhaps you could make some plans beforehand, especially with older children. The funeral or cremation can be both a time to say goodbye and also a time to celebrate your life.

Anyone who is bereaved may find the person's birthday, or the anniversary of the death, particularly difficult to deal with. It may help to create particular personal ceremonies at these times, or perhaps visit the grave or cemetery and share stories about the person.

Many books discuss ways of talking to children about death and dying and supporting them through the grieving process. Some books| have ideas and advice about how to create a memento box, or a scrapbook.