Supporting your child when you or a loved one have a life limiting illness.

At Jigsaw South East we recognise how life becomes different for children when a family member has a life limiting illness. Big emotions often can’t be labelled and they pop up out of nowhere. A child experiencing anticipatory grief puddles in and out of their big emotions just like a grieving child puddles in and out of grief. One moment they are overcome with the anticipation of what might happen and next moment they are asking for the ketchup to have with dinner.
Your child will need space and understanding during this time, and helping children to talk about how they feel takes time and practise. As their special adult you will be adjusting too, whether you are adjusting to your illness or as the supporting adult possibly adjusting to the new daily routines that caring for your loved one brings.
Our support workers are skilled at helping families prepare for loss and the challenges they face. Here are some ideas of ways you can communicate with others to help get the support you need.
Remind teachers and school staff of your family dynamic
Every new academic year brings new adults into your child’s life at school. It can be helpful for them to know that your child is facing these challenges and heightened emotions out of school. This could be an email to remind them or asking for a meeting with a new class teacher or Head of Year. Things to point out to staff is an increased sensitivity around special occasions, or quiet time needed to process their thoughts.
Leaving a loved one at the start of a school day can be hard
Children who are anticipating loss can find it hard to leave their loved one at the start of each day. They can experience more intense feelings of worry. Have a clear routine so you and your child know what’s happening. This routine can be more important in times of change. Speak to school about contact with your child during the day and it that is something that they can help with. Some children need to feel connected to their adult during the day, you may want to talk about how you would contact them during the day if you had to share important news with them about their loved one.
Allow for anger and give space for big feelings
Children need to show their feelings when a loved one is not expected to live. Anger is a difficult feeling as its usually shown towards you as their trusted adult. If you can, help you child recognise their feelings of anger when they are emerging. Have something that they can ‘do’ when they start to feel really cross – kicking a ball around, trampoline, throwing bean bags. If it helps, do it together
Make time for sadness and reflection
Just as anger creeps in uninvited, so can sadness. Children can appreciate this time to reflect, maybe having a ‘comfort box’ of special things could help them. This can be something you prepare together as a family. A favourite teddy, a comforting smell or something to help them feel close to their loved one could all be inside. Over time, they may recognise when they need to look at their comfort box.
Reach out for support, however small you think your question may be
Our support workers are on hand to listen, suggest and offer guidance if anything worries you about your child’s behaviour. Please do contact us via our Helpline, our website or using the contact details you were given after a referral.
Our helpline
We are here for you. For anyone struggling to cope, our helpline is open Monday – Friday, 9.30am – 12.30pm. Call 01342 313895 if you need support or advice. We help bereaved children and young people and those facing the death of a loved one in Surrey, Crawley, Mid Sussex and West Kent.