Advice

How do I tell my child I’m dying?

January 27, 2023

The minute you hear the news that you have a life threatening illness, everything changes. The minute you find out it’s terminal, well, change isn’t really the right word, is it? More like everything has just turned upside down, shaken you around a few times like a giant human sized blender, and dropped you back out of the bottom, pointing and laughing at you as it does so.

And then you have to tell your children.

When should I tell them?

We’re going to assume they already know that you have a serious illness (if not, our guide has lots of tips on how to tell them!), so they may already know that a terminal prognosis was a possibility. Firstly, when you find out that news, it’s important to take some time to process it yourself; it’s normal to feel anxious, angry, sick, upset, guilty and pretty much every other emotion there is and these feelings won’t go away overnight, but taking a little bit of time to let them settle can really help you be able to tell your children in a clear and open way.

It’s good to also take this time to prepare for what questions they may ask and find out the answers to anything you’re not sure about yourself – chances are, you’ve already thought of a few things you wish you’d asked the professionals, or you forgot most of the details the minute you stepped out of that room.

In terms of timing, children and young people will pick up on even the smallest of changes in the household, overhear snippets of conversation, or wonder why you won’t talk about your illness now when you’ve been open about it before. It’s important to talk to them as soon as you feel ready and able to, especially if other people in the family already know – them finding out you’re dying from Great Aunt Linda and thinking you’ve hidden it from them really isn’t going to help anybody…

How do I have that conversation?

We can’t lie and say it’s going to be easy. Think back to how they responded when you told them that you had a diagnosis; was there anything you could’ve done a different way? Anything you wish you’d put in place? Anything that worked well? It’s important to remember that they may react entirely differently this time – they may have been worrying that this conversation would happen since they were told you were ill, unlike last time when the news may have come completely out of the blue. For other young people they may have thought you were going to get better, so this will be a big shock they weren’t expecting.

However they react, it’s important to be honest. They may have questions you haven’t even thought about yourself, and it’s OK to say you don’t know.

As a parent, you want to protect your child, so you might automatically try and reassure them and look for positives – but it’s also helpful to say that actually, it is all a bit rubbish, and you understand if they’re upset and angry. This helps let them know that they are allowed to express their feelings, even if they aren’t particularly nice ones, without thinking they have to “stay strong” and bottle everything up.

The next steps

Young people in this situation need time to process what they have been told. They may want to know what is going to happen next, when your next appointment is, are you going to continue treatment etc, or they may want to pretend it isn’t happening and refuse to talk about it at all. They may disagree with you if you have decided not to have more treatment, think the doctors have got your prognosis wrong, or become angry and blame anyone and everyone for what is happening.

Allow them the space to understand and express their emotions in their own way, even if their response isn’t what you expected or had hoped for. Assure them that they can come to you if they have any questions or want to talk, and that however they’re feeling is OK and normal. There isn’t a right or wrong way to cope with this, for any of you, but you are all in this together.

It can also be worth encouraging your child to do things they enjoy at this time, as it can be easy for children to feel guilty or think they must stay home all the time to spend time with you. Making memories and being together is important, but let them know it’s equally alright for them to spend time with friends or continue their hobbies – as much as you love them, you might need some quiet time alone too!

Getting support

If you’re worried about how your child is coping, support is out there. It can be helpful to discuss what’s going on with their school, so arrangements can be made if they are struggling – try and find out if there is a process for what happens if your health deteriorates, for example; is your child allowed to keep their phone with them in lesson? Do the office staff have your child’s timetable so they know where to find them if you ring reception? Is there a pass they can have for if they need to get out of lesson and speak to the pastoral team? Just knowing these things are in place can be a little bit of reassurance to both you and your child, when everything else can be up in the air.

Sometimes it can be helpful to talk to someone outside of the family, so we can provide support to anyone in the UK aged 5-25 who has someone close to them with a serious illness. We do work from the moment of their loved one’s diagnosis, but young people can access our support at any point after that diagnosis – and our support continues, even if bereavement does happen. Our support page has the information you need.

Lastly, look out for yourself too. There are lots of organisations across the UK, both local and national, who are there to help. None of this is easy and you might feel you have to hold it together for everyone else, but do your research about what’s out there and reach out if you need to.