Talking to children about your condition

Talking to children about your illness can be a very difficult thing to do, and may be upsetting for both you and the child. However, involving children in the situation and letting them know what is happening can be very supportive to them and can help them (and you) to cope better with the illness.

• A serious illness affects the feelings and emotions of the whole family and a child has a right to know about anything that affects the family.
• Children can sense when something is wrong, because they are very sensitive to tension and stress. If you try to protect them by saying nothing, they may fear that something even worse is happening.
• Not talking about your illness may suggest it is a subject too terrible to be discussed, and can make children have an exaggerated fear of illness later on.
• Children may find out the truth from someone else, or get misleading and frightening information from TV, the internet or other sources.
• Children can feel isolated if they are not told. They might feel they are not important enough to be included in an issue that affects all the family.
• Children are good at noticing things but may be mistaken in their interpretation of what they mean. For example: 'Grandad died in hospital. Now Dad has to go into hospital. He is going to die too.' Or 'I was cross with Mummy when she told me to pick up my toys. Then she was ill. Maybe I made her ill.'
• Children who know the situation can be a comfort to you. You won't need to watch what you say all the time or feel secretive and isolated in your own family. Openness can help all of you to feel closer.
• Children have an ability to deal with the truth that adults often underestimate. Not knowing things can make them feel anxious. Even very sad truths will be better than the uncertainty of not knowing what is happening. We cannot stop them feeling sad, but if we share our feelings and give them information about what is happening we can support them in their sadness.
• Dealing with a serious illness in the family can be an opportunity for children to learn about the body, illness, treatment and healing. They can learn about how strong people can be during hard times and how to deal with difficult feelings.

As a parent or carer, if you feel able to tell the children, it is usually best for you to do it. This is a very difficult thing to do and there is no easy way of saying it. It is all right to get upset or cry. Seeing you cry gives your children permission to cry too, and crying together can feel very supportive as you are sharing your feelings. You will know if you feel able to cope with being the one to tell them.

If you do not feel able to tell the children, your partner or a close relative such as a grandparent could do it. A nurse or your doctor or a member of the professional staff looking after you can also be involved. It is important that you know what has been said to your children, and it would be helpful for you to be present when they are told to ensure everyone is giving out a consistent message.

After being diagnosed, it's helpful to explain what's wrong. You don't have to tell everything at the same time. You can give a bit of information at a time.

Before treatment begins and when you're being treated, you can explain the treatment and how it's given. You can also talk about the side effects and about any changes in treatment, whether things will be different at home or how you feel. Some treatments can make you feel very tired and possibly irritable. It's helpful to explain this to your children so that they know that the treatment may affect how you behave and relate to them.

Try to keep information relevant to the current situation. It can be best to give children warning that something is about to happen, such as a scan or treatment, shortly beforehand, but not too far in advance.

After you finish treatment, explain to your children that you will tell them about your health and about any changes.

Be willing to talk whenever your child asks questions or seems concerned about your condition.

There may be particular places where you feel more able to talk to your children, or they may be more likely to discuss things with you. An example is when they're in the bath.

Often, children may talk about things or ask questions when they're in bed and settling down to go to sleep. It's very important to answer any questions that they ask at this time.

However, unless your child raises the subject, bedtime may not be a good time for you to start a conversation that could be difficult, as the child may then have a long time on their own to think about the situation or may not be able to sleep. If they do ask questions at this time and you talk to them, it's important to spend time with them to make sure that they feel supported before they go to sleep.

You can talk to your children as a group, or individually (if they need to know different things because of differences in their ages or how grown up they are).

You may want to practise what you will say and anticipate the questions that the children will ask. It's important to talk in a language and at a level that each child understands.

It's helpful to create an environment in which your children feel safe and in which they feel able to ask questions, even if they feel sad and upset. Set aside plenty of time, when you know that you will not be interrupted, and let the children know that you have plenty of time to discuss the situation with them.

Children need to be told information in a way that they can understand.

• Tell them what has happened, such as some details about your illness.
• Explain what will happen next, such as how it will be treated.
• Leave them with feelings of hope that even though you are upset now, there will be better times.
• Assure them they will still be loved and cared for. Tell them who will look after them if you become very unwell and if you don't survive.
• Listen to them – it lets you know what they can cope with.
• Answer their questions simply.
• Ask them what they know about your illness. Explain it as well as you can.
• Ask them if they are worried about anything in particular.
• Correct any misunderstandings they may have.
• Be honest.
• Let them know how the situation affects your feelings and emotions, as well as giving factual information about your illness and treatments. An example is that you can say you may feel more sad than normal, or may be more easily irritated.
• It is better to be honest and say you don’t know the answer to a question than to make something up. Say you will try to find out the answer for them.

• 'I have an illness. It's called [your illness]. The doctor is giving me medicine to help me get well. Sometimes I will feel ill or tired and sometimes I will feel fine. Dad/Mum will help me to take care of you until I feel better.'
• Simple and straightforward language is the most helpful, for example: 'Some of the cells in my (tummy) are growing too quickly and have made a lump that is sore. The doctors will take the lump out during an operation.'
• 'Being ill makes me feel sad. You are a help. We can have all sorts of feelings when someone is ill – we can feel angry, sad, happy, upset, or whatever and this is okay. Mummy/Daddy and I will always love you’.
• 'The multiple sclerosis is active again. That makes me angry and sad, too. I need to use a wheelchair now because my walking is affected. Doctors know a lot about taking care of people when this happens.'

Sometimes it can be helpful to use books about your illness to help you to describe it. Below is a list of suggested books which may be helpful, but your specialist nurse or local hospice may also be able to help recommend other books which are suitable.

3-5 years

• When Dinosaurs Die: A Guide to Understanding Death by Laurene Kransy Brown and Marc Brown, publisher: Little, Brown and Company (2006)
• I Have Feelings by Jana N Hunter, publisher: Frances Lincoln (2002)
• Badger’s Parting Gifts by Susan Varley, publisher: Collins

6-10 years

• Muddles, Puddles and Sunshine, Winston’s Wish (2000)
• When Someone has a Very Serious Illness by Marge Heegard, publisher: Woodland Press (1991)
• A Dragon in your Heart by Sophie Le Blanc, publisher: Jessica Kingsley (1999)
• What on Earth do you do When Someone Dies by Trevor Romain and Elizabeth Verdick, publisher: Free Spirit (1999)
• Waterbugs and Dragon Flies by Doris Stickney, publisher: Continuum (1982)
• The Secret C: Talking Straight About Cancer by Julie Stokes, publisher: Winston’s Wish (2000)

11-13 years

• Finding a Way Through When Someone Close has Died by Pat Mood and Lesley Whittaker, publisher: Jessica Kingsley (2001)
• Can I Still Kiss You: Answering Your Children's Questions About Cancer by Neil Russell, publisher: Health Communications Inc (2001)

Teens

• Straight Talk about Death for Teenagers by Earl A Grollman, publisher: Beacon Press (1993)
• The Young Person’s Guide to Multiple Sclerosis by Kerry Mutch and Alison Whittam (2010), publisher MS Trust
• Healing your Grieving Heart for Teens by Alan Wolfet, publisher: Companion (2001)
• A Pocket Full of Plasters, Winston’s Wish

Some don'ts

• Don't lie.
• Don't trouble them with complicated medical details, money problems (except when it will affect them), or your worries about waiting for the results of tests, etc.
• It's best to avoid words for cancer, such as 'the big C', or 'breast mouse' for breast cancer, or 'a nasty tree growing inside me' as this can give children the wrong idea which can be very frightening. Just say 'cancer'.
• Don't make promises you may not be able to keep. (Say 'I think I will be able to...' or 'I'll try to...')
• Don't be afraid to say 'I don't know'.
• Don't push children to talk if they do not want to.

Sometimes all that is needed is time to adjust. At other times, there are various things that you can say or do to help.

Dealing with uncertainty

The uncertainty of what may happen is what will make your illness especially difficult to cope with. Living with uncertainty is part of having a serious illness and it can be hard to accept that. There are some questions you will not be able to answer. It can be helpful to tell your children that things are uncertain and acknowledge how difficult it can be to cope with that.

Find out all you can about your illness and its treatment, to make the unknown more familiar. You can also find out about symptoms of your illness, or possible side effects of the treatment. You can get this information by speaking to your specialist nurse or GP.

Changes

Everyone in your home is likely to be affected by your illness, even if they don't all show their feelings. There may be changes in how you look and there may be changes in what you're able to do.

You will want to try to keep things as normal as possible. Be there as much as you can for your own and your family's sake. Keep as many things the same as you can. A daily routine is important. Make sure that the necessary things get done.

Getting help

Another family member may have to take over some of the things you usually do. Children will learn that this is part of what it means to be a family. Get outside help if necessary, especially if you have side effects from repeated treatment that make it difficult to cope with a home and family.

It is also best, if possible, to have the same person helping, especially when there are young children who need consistent care. The Scottish Family Information Service can give you advice on finding childcare and social workers as well as information on local childcare facilities and help with finding funding for childcare, if necessary.

Who can help?

If you find that problems continue, let your GP and the hospital know. Don't hesitate to ask for professional counselling. This can help people to recognise, understand and deal with their emotions and feelings. Your GP can give you advice on how to contact other professionals who may be able to help or you can contact the British Association for Counselling and Psychotherapy.

It may be possible for the whole family to be counselled together. It is helpful to tell your child’s school about your situation so that the staff there can support your child.

You may find it useful to join a support group in your area, as it can be comforting to talk to someone in a similar situation. Ask your local library if there are any videos or books that may be helpful.

Physical changes

You may look different due to the illness or treatment: for example, you may put on or lose weight. Children are often more able to accept body changes than adults; however, it can help to let them know it's OK for them to talk to you about it. You may also feel tired and may not be able to do as much as you usually manage. You can give a brief explanation of why you look or feel the way you do, and leave it at that.

Other children

You may find yourself a subject of gossip among the local children. This may be your chance to help them to understand something about your illness, if you feel able to. On the other hand your children may not want to admit that anything has changed in your home. Let them know you are willing to talk to their friends if they would like you to, and if you feel that you would be able to. It is also helpful if you let your children know that it is OK for them to talk to their friends, other adults or health professionals about these changes and how they feel.

Dealing with change

Be as flexible as you can – sometimes changes make it necessary to declare a ‘state of emergency’ when everyone in the family has to adjust their plans at short notice. Try to be relaxed if changes must be made, although sometimes you may feel overwhelmed by many changes happening at once. Try to involve children as much as you can in the new plans. Children respond differently to situations according to their own nature and personality and have different needs at different ages.

Support for children

If children seem to need additional help and support, you could ask your hospital or GP about child psychologists or other help that may be available locally. Very young children may benefit from seeing a play therapist. Your GP, hospital specialist, hospice or social worker can arrange these services for you.

Discipline

Maintaining discipline during times of stress and illness may be difficult because children can behave badly in order to get the attention they feel they are missing. A breakdown in discipline can send signals to a child that something is very wrong at home and so it is important to set consistent and familiar limits and find ways to enforce them.

Let your children know you understand, love and accept them, but not their misbehaviour. Reward good behaviour and let them know that you especially appreciate cooperation now.

Helping children to understand your experience with your illness needs sensitivity and a good sense of timing. Your children may go through some of the feelings that you may have, such as disbelief, anger, uncertainty, hope, fear and acceptance. They may have special needs because of their ages, and these may change at different stages of your illness.

Children may show their worry or concern through disturbances in eating, sleeping, schoolwork or friendships. Children at any age may start behaving like younger children. Sometimes it is just their way of saying 'I'm here too'.

Fives and under

• The youngest children fear separation, strangers and being left alone. If you're in hospital, arrange for a familiar person to stay with them. Talk to them and assure them that you're coming home from hospital soon and that you think of them when you're apart. If they come to visit you, suggest they bring a well-loved toy with them. You can give them something special (such as a toy or a blanket) that they can keep with them when they are at home, to remind them that you're thinking of them and that you care about them.
• Young children often feel they have magical powers and that what they wish will come true. They may feel guilty that a parent is ill, or that they have had bad thoughts about a parent. Assure them that nothing they have done, said or thought could have caused your illness. They may also worry that they too will get your illness, and it is helpful to let them know that it is not 'catching'.

Ages 6-11

• Children between six and eleven may be very concerned about a parent's health. It is important not to put pressure on them or worry them with details.
• Many children of this age have a basic knowledge of body parts and their functions, and can understand simple explanations about your illness and its effects on the body.
• Let the children's teachers and school nurse know about your condition, as their suggestions and understanding will help if there are any problems. You could also ask your child if there is anyone they would like you to tell about your illness, such as their brownie or cub scout leader or their friends' parents.

Teenagers

• Teenagers can have an especially hard time – adolescence is not an easy phase in any case. Their emotions are sometimes complicated and troublesome. They may find it hard to talk to you or to show you how they feel, and at times their behaviour may be difficult for everyone to deal with.
• At a time when they're probably struggling to be grown-up, they may feel that it will be seen as childish to show their emotions or to ask for help. They may stop talking to you because they are trying to appear strong for you, or are worried that they will be misunderstood.
• It may help to reassure them that talking about their feelings and worries is a positive way of coping and is how adults often deal with stressful situations. If they are finding it hard to talk to you, encourage them to talk to someone close who can support them, such as a relative or family friend.
• Your illness may mean that they are asked to take on more responsibility than they had before. This can be a positive experience for them if they feel that their efforts are helpful and recognised. However, difficulties can arise if they feel over-burdened with responsibility to the point of not having their own needs met. Teenagers need to be included and consulted as adults, but will continue to need guidance, support and reassurance.
• Boys may have difficulty dealing with women's illnesses due to self-consciousness around the time of puberty, and girls may worry that they will develop the same type of illness.
• Girls may have difficulty dealing with men’s illnesses, such as prostate or testicular cancer. Boys may worry that they may develop the same type of illness.
• Keeping to any rules that you had before your illness is also important. Teenagers need to know that a normal life matters even more than before.

If you never show how you feel, the chances are your children won't either. Trying to hide strong feelings can be very difficult and may cause even more problems. Covering up strong emotions can mean that the emotions build up. A child can become frightened of his or her own feelings instead of accepting them as normal.

You are likely to be very sad about what has happened. Don't be afraid to express it. If you can let the sadness out and cry together, the tension is likely to ease and this can be very supportive for everyone.

Children may feel other things:

• Some children will feel sorry for themselves when a parent is ill, then feel guilty because they think they should feel sorry for the parent.
• Some children will try to make up for these guilt feelings by being especially good and setting impossibly high standards for themselves.
• Some children will cling to you too much, afraid that something will happen if they are not there.
• Some children will withdraw from you, unconsciously trying to become more independent in case something else happens to you.
• Some children will resent the fact that they need to help you when the opposite was true before.
• Some children will laugh and behave badly to cover up their real feelings or their lack of understanding (especially in awkward situations).
• Some children will pretend to be ill to get attention or because they want to be with a parent. They might make a big fuss about a minor illness.
• Some children may be afraid that they will get your illness too.
• Some children will have physical effects such as loss of appetite, stomach ache or stress-related headaches.
• Other children may show their distress in other ways such as lack of concentration, sleeplessness, bedwetting or babyish behaviour.

These things will pass with time, but let your children know that you understand and accept them as they are.

It is important to balance hope with reality. A time may come when the reality is that you're 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're 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 help them work through their grief.

Being prepared

The more prepared you're to talk about what is happening, the more at ease you're 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. It is important that this is someone who is known and trusted by the child or children, but this may not always be possible. The following people may be able to help:

• a trusted family member
• a friend
• your family doctor
• a specialist nurse
• 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's 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?

Some questions your children may ask

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 your illness?

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. Sometimes it helps to set aside a time each day to allow your children to ask questions or talk about how they're feeling. You will know your child best and whether this is a good idea or not.

Some answers you can give

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 in a consistent way as often as the child finds it necessary.

Other things you could say

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

'My illness 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.'

‘Unfortunately, I have an illness called______and that is why I have become ill even though I am not old.’

'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.'

‘Daddy doesn’t want to leave us, but there is no treatment to make him better and so he will not live to be old.’

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's no one's fault. It's because of Daddy's illness.' It's 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 ‘What is dying like?’ gives a description of the process of dying, which you may find helpful to read.

Afterwards

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.

Many books discuss ways of talking to children about death and dying and supporting them through the grieving process. Winston’s Wish and Macmillan Cancer have ideas and advice about how to create a memory box, or a scrapbook.