Yes, when you’re ready.
It’s natural to want to protect children from knowing about serious health issues in case it scares, upsets or worries them. But keeping it from them isn’t the answer.
This is because:
- Children are very aware of what’s happening around them. Even if you try to hide your condition, they’re likely to pick up that something is ‘wrong’ – from snippets of conversations or from changes in the mood or atmosphere at home.
- Not knowing what’s wrong may mean that children come up with their own theories about what’s happening – and these may be worse than the reality.
- As Parkinson’s progresses it will become more and more difficult to hide your symptoms and your children may find out from someone else. It’s much better that they hear about it from you. If not, they may feel resentful or worried about why you didn’t tell them.
- Trying to keep Parkinson’s hidden from your children may be difficult and exhausting for you.
- You may feel relieved to tell your children. Speaking about your condition to your family may help to ‘normalise’ your situation and make it less frightening for everyone.
If you’re a parent with Parkinson’s, it would be best if your children hear the news from you and your partner (if you have one). Be aware, though, that how you discuss it will be influenced by the way you feel about your Parkinson’s – you may need support with your diagnosis before you’re ready to tell them or you may need other family members around at the time.
If you’re a grandparent with Parkinson’s, you may wish to tell your grandchildren yourself or tell them with their parents around too. Alternatively, you may think it’s best for the children’s parents to break the news, and you speak to them afterwards.
There’s usually no such thing as the perfect time, but it’s helpful to think ahead about when and where could be a good opportunity.
Try to tell your children as soon after your diagnosis as you feel you can. You don’t have to make it a big occasion, but make sure you’re in a calm environment, free from distractions. Give yourself and your children the time and space you need. Leading up to the initial conversation you may feel worried about how to do it, but often the thought is worse than the actual event.
Try not to think of talking to your children about your Parkinson’s as a one-off event. Think about it as an ongoing conversation – there’s no rush to tell them everything in one go.
As your Parkinson’s progresses, and as your child gets older, you’ll need to talk about different aspects of your condition. Starting the conversation as openly as possible will help children feel that it’s OK to talk about your Parkinson’s as time goes on.
You can tell children about Parkinson’s at any age, but what you tell them will depend on what they are able to understand. The younger your child, the simpler the information needs to be. But even for older children, it will be helpful to keep the information simple to start with.
For younger children (under the age of around 7), try to avoid medical terms. Even with older children, try to describe new words or ideas in an accessible way without using medical language. Try to use the same words or kinds of words your child uses when they ask questions or talk about their feelings about your condition.
Take the lead from your children about how much to say – they may not be able to take everything in at once. Afterwards, check with them what they’ve heard and make sure they’ve not misunderstood anything. How much the condition currently affects you is probably a good place to start. You might ask if they have noticed any changes in you. Or you might start by saying something like, “Mummy has something called Parkinson’s, which is why her arm is sometimes shaky.” Make sure children understand that Parkinson’s affects people differently, and it may affect you differently to other people they know or have seen in the media with the condition.
Be specific and clear in describing your condition. Be honest in what you tell them – children may feel mistrustful if they discover later on that you haven’t told them the truth. Also, don’t assume anything. For example, you may know that Parkinson’s is not contagious, but do they?
Older children may want more information – and may even have questions you don’t know the answers to. That’s OK. Remember you don’t have to discuss everything in one go. Just try to get the message across that it’s OK to carry on talking about Parkinson’s.
Encourage your child to ask questions – not just when you speak to them, but at any time. This way they can really join in the conversation and feel listened to. They’ll also feel more involved and able to share their worries.
Whatever the age of the children in your family, don’t forget to remind them that although you may not be able to do everything you used to do, you still love them just the same.
Being told that a loved one has Parkinson’s can affect a child’s emotions, behaviour and even their performance at school. Every child will react differently, even those in the same family.
Try to prepare yourself for the following emotions:
Let your children know that it’s normal for them to feel any of these emotions – and make sure they know it’s OK to talk about them.
You should also look out for children trying to hide their feelings. They may do this because they think their reaction might worry you. If you think they’re hiding their feelings, carry on talking and encourage your child to talk to others too. You may want to tell other adults who your child has regular contact with, such as family members, family friends, teachers or childminders, about your Parkinson’s, so that they can keep an eye on your child and be another source of support. But only if you’re ready to talk openly about your Parkinson’s.
Children may also want to do something positive to help you. Perhaps you could start a new activity together, such as walking or another type of exercise.
Although it can be hard for them to cope with Parkinson’s, children are incredibly adaptable and, with the right support, they may surprise you with how well they can adjust. It may be one of those things in life that helps them become more responsible, independent, patient, mature, open and aware.
Common questions children have
- How did you get Parkinson’s?
- Why do you have Parkinson’s?
- Will I get Parkinson’s too?
- Will it go away?
- Can the doctors help you?
- Does it hurt?
- Are you going to die?
- Is it a secret?
- Will you still be able to take me to football/music/drama/ballet/etc?
There may come a time when you think your child needs extra help – or they may tell you they’re finding things difficult. Although it may be useful for them to speak to another family member, sometimes it can be better to talk to someone not involved in their family life. This may be a friend, a teacher or their GP, for example. If they still seem troubled or depressed, you could arrange for some counselling – for the child alone or with the whole family.
If you would like more help for your child, the first step is to talk to your GP. They should be able to explain the different kinds of help available and refer you to an appropriate service. There are also several organisations for children and young people that offer confidential phone support – see below. Some of these organisations, for example YoungMinds, also have a helpline that parents can ring for advice.
Remember, every family is unique and you’ll find your own way of living with Parkinson’s. If you have any concerns about talking to your children about Parkinson’s, call our helpline or speak to your Parkinson’s local adviser.
Parkinson’s UK has resources to help you explain Parkinson’s to your family. For children aged 3 to 7, we have a range of books available called My grandad has Parkinson’s, My gran has Parkinson’s, My mum has Parkinson’s and My dad has Parkinson’s. Older children could also read these alone.
You may also find our Easy read information about Parkinson’s booklet useful. It explains Parkinson’s simply by using easy language and pictures.
Don’t forget you can call our free, confidential helpline on 0800 800 0303 at any time to discuss any worries you have about Parkinson’s, including talking to your children or grandchildren. Your Parkinson’s local adviser will also be able to offer emotional support and advice.
Carers Trust - The Carers Trust works to improve support, services and recognition for those caring for a family member or friend, including young carers.
Carers UK - This organisation provides information, advice and support to carers. They also develop projects and campaigns on behalf of carers and have several young carers projects.
ChildLine - A free 24-hour helpline for children and young people in the UK. Children and young people can call the helpline about any problem at any time – day or night. ChildLine counsellors listen and help them find ways to sort things out.
The Children’s Society - This charity’s young carers initiative raises awareness of young carers’ needs, campaigns for policy change, supports schools, and works to see that these young people get the future and support they deserve.
Depression Alliance - This organisation works to relieve and prevent depression by providing information and support services to those affected by it.
Disability, Pregnancy and Parenthood - This organisation promotes better awareness and support for disabled people during pregnancy and as parents.
Family Lives - This organisation offers help and information to all parents and guardians. They also run a freephone helpline for anyone concerned about the children they look after.
Young Minds - This national charity is committed to improving the mental health of all children and young people. It has a free, confidential helpline which provides information and advice to any adult with concerns about the mental health of a child or young person. It also has several useful publications that help young people, parents and professionals understand when a young person is feeling troubled, and explains where to find help.
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Watch Anna and Lara talk about life with their dad, Nick, who has Parkinson's.
Animation by Teehee Creative Animation Agency.
A guide for teenagers
We've created information specifically for teenagers who have had a relative diagnosed with Parkinson's. It should help them to understand a little about Parkinson's and how it might affect their family.
Last updated November 2018. We review all our information within 3 years. If you'd like to find out more about how we put our information together, including references and the sources of evidence we use, please contact us at [email protected].