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Living with serious or terminal illness

A diagnosis of serious or terminal illness, of a parent or sibling, causes emotional upheaval, change in routine and circumstance, and impacts upon everyone in the family.

Supporting your children through this journey can be exceptionally difficult for parents. You are dealing with your own emotional situation and trying to care for your children too. In this section we provide some information we hope will be helpful at this time.
If you would like some support to help your child manage a challenging life event, Kenzie's Gift may be able to help. Kenzie's Gift provides one-to-one therapy for children and young adults.

Supporting Children when a Parent is Ill

"She grew up in a world where we discussed death openly and freely. Emma and I never had any secrets from her and would share things on an age appropriate basis." Grant's daughter Rebecca was aged two and a half when her Mum Emma was diagnosed with a serious illness.

When a parent is diagnosed with life threatening or terminal illness, telling the children about it may seem extremely difficult and just too hard to do. This is understandable.

The diagnosis may have been expected, or could have come out of the blue, but it has brought with it a wide spectrum of emotions - shock, fear, anger, sadness and more - and feelings of guilt, anxiety and maybe even relief that finally some facts are known.

There is also the realisation that life has changed for everyone in the family. The future is uncertain. You had always believed both you and your partner would be there for your children, to see them grow up, but now you're not sure.
It is a lot to cope with.

This section provides some guidelines for telling your children about your partner's diagnosis. When treatments have been unsuccessful, or there is a diagnosis of terminal illness, we provide some further guidelines here (Link to Supporting children when a parent is terminally ill)

When to tell your children

The need to protect our children is instinctive and so the first thought could be, 'I cannot tell them' but even young children can sense when something is wrong. Keeping the information away from children can add even more to an already overwhelming emotional and physical burden. They can feel excluded, confused, anxious and insecure. We have provided some guidelines for telling your children here (link to Telling children about a parent's illness: some helpful guidelines)

What children need most at this time:

  • Security
  • The certainty they will be cared for now and in the future.
  • Information and explanation, in a timely, clear and honest way, using language that is appropriate for their level of understanding.

How much do children understand about illness and death?

  • A child's comprehension depends on their age and we've given some guidelines about this in our section about bereavement.
  • Children of any age will detect that something is wrong. Young children will respond by asking questions repeatedly (you may find developing a script for your child will help).

Older children will have a grasp of illness and the permanence of death but may struggle with a parent's illness at a time when they are trying to find their own identities.

Telling children about a parent's illness: some helpful guidelines

  • Just make a start ... as soon as you can
  • Take some time to prepare
  • Choose a time where you won't be interrupted and a place that is comfortable. Have a trusted adult friend or family member with you if needed.
  • Determine how much to tell at one time: base this upon the age of your children and how much you feel they can 'take in', allowing time for them to process and ask questions.
  • Rehearse what you want to say beforehand. Taking the time to find the right words can enhance children's understanding.

What and how to tell

  • Tell your children that you or your partner is ill.
  • Call the illness/disease by its common name (for example 'cancer') and refer to it this way from now on. This will avoid confusion in future.
  • Give as much information as you can in age appropriate language. Be honest.
  • Talk about what will happen now, to the best of your current knowledge (for example, 'Mum may have to go to hospital from time to time and we will tell you when and for how long').
  • Encourage questions and answer them as best and as truthfully as you can. If you don't know the answer, say you will speak to the doctor and find out.

Explain how things may change at home

  • Let children know about hospital visits, treatment plans and assure them you will keep them fully informed as to when and for how long
  • Let them know who will be helping to care for them and how
  • Explain that the illness may cause both of you to act a bit differently - irritable, upset, distracted - and the children may feel a bit left out for a while.
  • Reassure them that you will always try to be there for them but that the ill parent will need more of your time.

When medical treatments are needed

  • Explain these in simple terms for understanding, encourage questions.
  • Describe why the treatments are being given and how they may affect the appearance and behaviour of your partner.
  • Reassure children that you will do your best to keep life as normal as possible at home.

If treatment is unsuccessful

  • Sit down with your children and let them know what this will mean for your family.
  • Please visit supporting children when a parent is terminally ill for some guidelines to help with this discussion.

If you would like some support to help your child manage a challenging life event, Kenzie's Gift may be able to help. Kenzie's Gift provides one-to-one therapy for children and young adults...

She grew up in a world where we discussed death openly and freely. Emma and I never had any secrets from her and would share things on an age appropriate basis.

- Grant

Supporting Children when a Parent is Terminally Ill

We've discussed some ways of supporting your children when a parent is diagnosed with serious illness here, but if treatments for that illness are unsuccessful, children will need to be part of another conversation with you. As hard as it was to tell your children about the initial diagnosis, letting them know that your partner will not recover can be even more overwhelming.

It is hope that keeps us going, and when hope is gone, it is a very hard and painful reality to accept. However if you have been communicating openly with your children up until now, and they have been a part of the journey every step of the way, they will probably have an understanding that things are not going well. Older children will be more cognisant of this but children of all ages have a need for security and will be feeling anxious about the future, and what the decline of your partner's health will mean.

A child's security is based on the trust they have for those who care for them and the impending loss of a primary caregiver is exceptionally stressful. Once again, ensuring honest and timely provision of information and continual reassurance that they will be cared for is vitally important at this time.

Here are some other guidelines for supporting your children:

  • A child's understanding of death is determined by their age - we have more information about this here
  • Deliver information in small doses. Allow time for questions and discussion.
  • Younger children have active imaginations and use 'magical thinking' to fill in the gaps or to make sense of things they don't understand. Ask questions to check they are taking in what you are telling them.
  • Connect what you are saying with what they have seen of your partner's declining health. Encourage expression of how they are feeling about themselves and the family.
  • Be prepared for answering questions that are difficult. It's OK to say 'I don't know'.
  • A terminal diagnosis doesn't always mean that death will follow soon. It may be weeks, months or even years before death. Such a concept of time is hard for very young children to understand and the associated emotional turmoil over a long period of time can be very stressful. Seeking help to get through a prolonged period such as this may be helpful for you and the children.
  • Children can move in and out of moods quickly: sad one moment, playing the next. This is normal but watch for mood changes that persist for long periods of time, or changes at school, particularly in young people and adolescents.
  • Having another family member with whom they have a trusting relationship (perhaps an aunt or uncle) can be fostered, as can the relationships they have with their peers. Teens are at a stage in their development where they are moving away from parental ties and so having someone else to talk to can be very helpful for them.
  • Maintain the usual routines and enforce usual parameters of behaviour.
  • Teens in particular may be fully aware that their parent is dying and yet their primary concern may be, 'Can I still go to the school prom?' They may also feel resentment at being the one within their peer group who 'isn't cool' because they have a dying parent. Keep up the communication, acknowledge their emotional ups and downs, keep usual parameters in place for routines and behaviour, and encourage the support their good friends can provide.
  • Young children may respond to the emotional stress through behaviour: anger, tantrums, withdrawal are common responses. Allow the expression in a safe environment.
  • Provide children with opportunities to be involved with the care of the parent, if they want to
  • Visiting the ill parent in hospital or hospice can be offered but not pushed.
  • Keep the children in contact with their Mum or Dad . Phone calls, emails, or hand written cards and notes will help children feel connected and included.
  • Hiding your emotions may make them feel embarrassed about expressing theirs, or that it's wrong to feel grief and sadness. Talk to them, tell them how you are feeling, and encourage them to do the same.
  • Even though it is a time of great sadness, there is nothing wrong with having some fun with your children. Give yourself and your children permission to enjoy yourselves.
  • When death is near, children need the opportunity to be there during the last times together. With the right help and support, children may look back on this final time as being very precious.
  • Children may want to say good bye by viewing the body of their parent. We provide some guidelines to assist with this decision here and some ideas for participation in rituals, funerals and cultural protocols

If you would like some support to help your child manage a challenging life event, Kenzie's Gift may be able to help. Kenzie's Gift provides one-to-one therapy for children and young adults.

I was completely lost and didn't know what to say to Ashton. How can you help a child so young understand what is happening? How do you tell him that Daddy only has a few years to live and cannot do the things other Dads do?

- Gemma

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