Support for Children: If a Parent Has an Incurable Illness
When a parent is terminally ill, children of all ages need support. Holding everything together for a young family during the uncertainty of a life-limiting illness is an almost impossible task. But you don't have to do it alone, and you can't do it perfectly.
With time, hopefully you will see that your children are inspirational. Young people are naturally resilient and resourceful, because they don't process information in the same way as adults. It can be easier than you might think to share facts and information with them, in age appropriate language, during anticipatory grief and bereavement.
Although we can't tell you that it will be easy, because protecting your children from harm is an ongoing mission without a guidebook. We've seen that loving them is enough to keep them safe and can help them, even in the very worst of situations. But there are no guarantees in life, you know that already.
Below are the charities, resources and practical tools we found helpful while living alongside terminal illness. We hope they also help your family.
School can become a pressure point when a parent is seriously ill. Children may struggle to concentrate, withdraw from friends or find it hard to leave home in the morning. Emotionally based school avoidance (EBSA) is when a child finds it genuinely difficult to regularly attend school. It can develop due to anxiety, fear of separation from a parent, social pressure or academic stress. It's quite common. If you notice it happening, and you're sure that your child is not being difficult, solutions usually involve consistent communication between parents, teachers and the child together. You may have to be a strong advocate for their needs through this difficult phase of their experience. Many schools have trained Emotional Literacy Support Assistants (ELSA) who can offer one-to-one support during the school day. Ask your school what their bereavement and pastoral care policy is, and whether they have an ELSA. Some schools run group support for young carers. Child Bereavement UK work directly with schools to establish these programmes. Ask whether your school has access to these resources or something similar locally.
Your children don't always need to talk directly to process what they're feeling. Often the most important thing is shared time with you, without an agenda. Activities like drawing, crafts, baking, sport or getting outside can create the conditions for conversation to happen naturally. Moving their bodies during games and art can help children voice emotions they don't have words for. The Ruth Strauss Foundation and Child Bereavement UK both offer ideas and resources to help parents open these conversations at home. Hearing other people's stories also helps. Films where characters experience loss, such as Coco, Up, The Lion King, Big Hero 6, Onward and Charlotte's Web, allow children to see that grief is a normal part of life, and that people find ways through it. You don't need to avoid the word "death" at home. Children who understand that everyone dies tend to find living with serious illness less frightening. For books, Child Bereavement UK publish age-appropriate reading lists including titles for children with special needs. For podcasts, search "podcasts for children about death" for current options and listen first to check they're right for your child's age and needs.
Teenagers are carrying more weight than younger children, because life keeps moving for them. Exams, friendships, sport, and social events will keep happening and they won't want to miss out. While at home they may need space to process and catch up with themselves. The gap between their life and the one they watch others living can feel enormous and isolating. Daily routines, physical activity, social connection and healthy distraction are genuinely important for adolescent resilience. Feeling their emotions during "normal" events such as joy at a match, laughter with friends, or pride in a performance is part of how teenagers gradually build a capacity to cope with the harder part of their own reality. It's normal for grieving young people to feel withdrawn, low or lethargic at times. If you're worried about your teenager's mental health, speak to your GP. Hope Again, the young people's service run by Cruse, offers peer support specifically for bereaved young people. As well as www.childbereavementuk.org 'Cheer The F**k Up' is an intentionally sharp, funny book by Jack Rooke about loss, the importance of conversation and mental health for teens. It may be useful for parents. This short film is a moving account of one young person's resilience. Watch it yourself, before sharing. www.youtube.com/watch?v=eebodvoT9XE
Several UK charities specifically support children and families living with terminal illness and bereavement. You don't have to wait until after a death to reach out. Child Bereavement UK supports families before and after bereavement, offering resources for parents, schools and children of all ages. They also run a helpline. www.childbereavementuk.org The Ruth Strauss Foundation specialises in support for families affected by incurable cancer, with particular focus on supporting children when a parent is ill. www.ruthstraussfoundation.com Childhood Bereavement Network is a hub for finding local bereavement support services for children and young people across the UK. www.childhoodbereavementnetwork.org.uk