Serious illness in the family

Some tips to try

Short pieces from the library, and a first thing to try from each.

• Before Your Child Visits a Parent in Hospital. Check with the ward, ask your child whether they want to visit, and tell them what they’ll see.
  • Ask your child whether they want to visit, and check with the ward and the parent in hospital.
  • If the upset lasts, with problems sleeping, eating or at school, talk to the GP or the school.
  theparentbook.com/quick-tips/before-your-child-visits-a-parent-in-hospital
• The Teenager Who Looks Everything Up. A teenager may look the illness up whatever you say, so give them the real information first and offer to look together.
  • Tell your teenager the real information first, including what nobody knows yet.
  • If your teenager has a question you can’t answer, offer to take it to the specialist nurse or the doctor.
  • It helps a teenager to have someone outside the family to talk to as well. Hope Support Services, a UK charity, offers online support to young people of five to twenty-five when someone they love has a serious illness, and young people can refer themselves. It is not a helpline: its support starts with a form on its website. Your teenager can also talk to someone in confidence. Childline, 0800 1111. For anyone under 19 in the UK. There is a one-to-one chat online at https://www.childline.org.uk/get-support/1-2-1-counsellor-chat/. Help is free and available at any hour.
  • If your teenager’s low mood has lasted most days for two weeks or more, or you are worried about how they are, see the GP. If your child has hurt themselves, or talks about not wanting to be alive, stay calm, thank them if they have told you, don’t promise to keep it secret, and act that day: help them ask the surgery for an urgent appointment, and if it is closed, use the routes under “If you need help right now”, at the foot of every page.
  theparentbook.com/quick-tips/the-teenager-who-looks-everything-up
• When a Parent Is Not Expected to Live. Use the words “die” and “dying”, say it in parts, and let your child choose how involved to be.
  • When the doctors say the time is short, tell your child, using the words “die” and “dying”.
  • Let your child choose whether to visit and say goodbye, and tell the school.
  • A child may say they want to go with their parent, or to die too. Treat it as talk of not wanting to be alive, even if you are not sure what your child meant. If your child has hurt themselves, or talks about not wanting to be alive, stay calm, thank them if they have told you, don’t promise to keep it secret, and act that day: help them ask the surgery for an urgent appointment, and if it is closed, use the routes under “If you need help right now”, at the foot of every page. Your child can also talk to someone themselves. Childline, 0800 1111. For anyone under 19 in the UK. There is a one-to-one chat online at https://www.childline.org.uk/get-support/1-2-1-counsellor-chat/. Help is free and available at any hour.
  theparentbook.com/quick-tips/a-parent-not-expected-to-live

The rest of each tip, with more to try and why it works, is in the library.

Something to do together

A notebook for the questions. A notebook of your child’s own for the questions about a parent’s illness that are hard to ask out loud. You look in it every evening and answer the next day.

What it is for. Children often have fears about a parent’s illness that they don’t mention, and some stop asking questions to protect the adults. A notebook of their own gives your child a way to ask without having to say it out loud, and gives you a night to think about the answer.

• The first step. Write the first page yourself, before you give the notebook to your child: that they can write or draw any question in it, about the illness or anything else, and that you will look every evening and answer the next day, in writing or face to face, whichever they prefer.
• When you give it to your child, tell them two more things. If something is frightening them, or they feel unsafe, they should tell you or another adult straight away, and not only write it down. And if something they write makes you worried about their safety, you will need to get help, and you will tell them what you are doing.

Safety. Keep the notebook away from brothers, sisters and visitors unless your child wants to share it, but never promise that what is in it will stay secret: if it is about your child’s safety, or anyone else’s, act on it that day. Keep medical details your child hasn’t asked about out of your answers.

When to get help. If your child’s low mood has lasted most days for two weeks or more, if worry or problems with eating, sleeping or school do not settle, or if you are worried about how they are, talk to their GP and their school. A child may write or say that they want to go with their parent, or to die too. Treat it as talk of not wanting to be alive, even if you are not sure what your child meant. If your child has hurt themselves, or talks about not wanting to be alive, stay calm, thank them if they have told you, don’t promise to keep it secret, and act that day: help them ask the surgery for an urgent appointment, and if it is closed, use the routes under “If you need help right now”, at the foot of every page. If your child tells you that someone is hurting them, stay calm, thank them for telling you, don’t promise to keep it secret, and act that day, using those routes; if the person hurting your child lives in your home or your child’s other home, go straight to children’s social care or the police. A child protection helpline, listed under “If you need help right now”, at the foot of every page, will talk it through with you. If your child is badly hurt, or may have taken too much of a medicine, get medical help straight away, even if they seem well.

The other three steps, and your part in it, are in the library.

If you want to read further

• When a Parent Is Seriously Ill. For parents whose own serious illness, or the other parent’s, has changed life at home. theparentbook.com/reader/when-a-parent-is-seriously-ill

Worth your time

• A book for you: Listen, Kathryn Mannix. Kathryn Mannix on how to have tender conversations with people in distress, including children, using curiosity, silence and good questions. Useful before telling a child difficult news or hearing their worries. uk.bookshop.org/p/books/listen-how-to-find-the-words-for-tender-conversations-kathryn-mannix/e94fb15b1ff920a3
• A book to read together: I Have a Question about Cancer: Clear Answers for All Kids, including Children with Autism Spectrum Disorder or other Special Needs, Arlen Grad Gaines and Meredith Englander Polsky. Plain questions and answers, illustrated with symbols, for any child whose parent or relative has cancer, including autistic children and those with other additional needs. It suits a child who takes things in best when they are set out simply and in order, and has guidance for the adults.
• Something to watch: What Is A Young Carer | A Short Film By Young Carers, Carers Trust, YouTube. Made by young carers themselves: what caring for a parent or sibling involves, how it feels, and why being recognised as a young carer opens the door to support. www.youtube.com/watch?v=BxzoS3-ILu4
• Something to listen to: Episode 195 - Dr Cassie Rhodes Talks with Professor Louise Dalton: Talking to Children and Teens about Serious Illness, Get a Grip - Evidence-Based Conversations for Parents and Educators, 48 min. Oxford researcher Louise Dalton explains why being open and honest with children about a parent’s or relative’s serious illness protects their mental health, and how to begin those conversations, with advice for schools. podcasts.apple.com/gb/podcast/episode-195-dr-cassie-rhodes-talks-with-professor/id1450644258?i=1000705587764

Who else can help

This usually starts at school, which sees your child every day; the council is the route to a young carer’s needs assessment, and to a carer’s assessment for the adult at home; the GP is there if your child’s distress lasts or deepens; and Citizens Advice can help with benefits, work and money.

• Your child’s school. The pastoral lead, the head of year, or the form tutor. Free, already knows your child, and often the quickest way to get something changed at school. Before or alongside anything else. A school cannot act on what it has not been told, and what you bring is often what it did not have.
• Your local authority. The council’s children’s services and SEND team. They hold statutory assessment, the Local Offer, and early help for families who need more than a school can give. In England it must also arrange a young carer’s needs assessment if your child or you ask for one, and a carer’s assessment for an adult who gives regular care. When school-level support has been tried and is not enough, or when you want to know what your area actually provides. www.gov.uk/find-local-council

• Macmillan Cancer Support. The clearest UK guide to telling children about a parent’s cancer, age by age, and a free daily support line with nurses on the same number. When a diagnosis has arrived and you are rehearsing how to say it. Macmillan Support Line 0808 808 00 00 · Every day 8am-8pm · Online chat every day 8am-7.45pm; email through the online form, answered within two working days; the advisers on the line include cancer information specialist nurses · Outside those hours the line is closed. Samaritans answer at any hour on 116 123, and Shout answer if you text the word SHOUT to 85258. www.macmillan.org.uk/cancer-information-and-support/diagnosis/talking-about-cancer/talking-to-children-and-teenagers
• The Children’s Society Young Carers Service. The Children’s Society’s young carers programme, with a finder for the young carers’ service in your area. When your child has taken on caring for someone at home; the young carers’ project nearest you is the thing to find. Charged at your standard call rate, not free. Include (Children’s Society Young Carers) 01962 711 511 · Mon-Fri 9am-5pm · Outside those hours the line is closed. Samaritans answer at any hour on 116 123, and Shout answer if you text the word SHOUT to 85258. www.childrenssociety.org.uk/information/young-people/young-carers
• Hope Support Services. Free one-to-one support for your child, aged five to twenty-five, by video or audio call, messaging or email, while someone they love has a serious illness; you refer them on Hope’s website, where a young person can also refer themselves. Once your child knows about the diagnosis and is finding it hard, at any point from then on, though it is not a 24-hour service. hopesupport.org.uk/support

The full list for serious illness in the family, with what each organisation does and when it is the right call, is at theparentbook.com/help/serious-illness/services