Caring for Terminally Ill Children with Cancer & Other Diseases

One of the hardest things to bear is the realisation that a child will not recover from their illness.

As a parent you will be their primary carer until they die. Your role during this time is to provide the most normal, happy and physically comfortable life for your child; to help prepare your child for their eventual death and to simultaneously manage your own heartbreak.

Caring for and supporting a terminally ill child is quite different from dealing with an adult in the same situation. Children often have no concept of death. Talking about your child’s illness and death with them is probably the hardest aspect of dealing with a terminal illness.

  • Children are perceptive and although you may think you are protecting them by not speaking to them about their illness and death they may already have their own suspicions or have picked up what other people are saying.
  • Hard as it is to face, if it is likely your child may die soon or the illness may progress quickly then it may be wise to talk to your child now.
  • You know your child better than anyone and you know what they can cope with. However, you haven’t been in this position before and the guidance and help of friends, family and professionals is vital when deciding when and what to tell your child.
  • Don’t shy away when they ask questions, view it as an opportunity to talk openly and finish when they seem to have got the information they need at that point in time.
  • Try to be honest and let a child know what is happening without terrifying them or leaving them so devoid of hope they can’t go on. There is a delicate balance and it is important to prepare what you are going to say before you actually talk to them.
  • Your child trusts and depends on you. Although you will be upset, this is not the time to fall apart. Your child needs you now more than ever and has to know that they can turn to you for love and support. Reassure them that you love them and will continue to do so and they will not be alone.
  • Discussing the illness, treatment and death will be a process rather than a one off event. Ask open ended questions that allow your child to express how they feel. Look for chances to discuss death and illness in a natural way, such as the death of a pet or illness on a television programme.
  • The age and developmental stage of your child will have an impact on how they communicate - you may need to use pictures to help them understand.
  • Try to keep things normal for as long as possible. Allow children to play, interact and be sociable. Let them attend school, see friends and maintain friendships whilst they are able.
  • Plan for the end. Ask your child what their wishes are and give them time to say goodbye.

Nothing can take away the pain you will feel at losing a child. You will feel angry and even guilty. Talk to friends and family or a professional about your feelings. Supporting your child during a terminal illness and allowing them to express how they feel can help bring closure to a devastating time in your life, if you need the support or guidance of others then try our forum.