What do you tell the children?
What you tell your children and grandchildren and choosing the right moment to do so will depend on their age, their nature as individuals and the relationship you have with them. It’s natural to want to protect children from knowing about serious health issues in case it scares, upsets or worries them, but it is usually better to be open and tell them because:
Even if you try to hide your condition, children are very aware and are likely to pick up that something is ‘wrong’.
Not knowing what is wrong may mean that children develop their own theories about what is happening, and these may be worse than the reality.
As Parkinson’s progresses it will be difficult to hide your symptoms and your children may find out from someone else – and it’s much better that they hear about it from you (and your partner if you have one). They may otherwise 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. Talking with your family may help to ‘normalise’ your situation and make it less frightening for everyone.
If you are a grandparent with Parkinson’s, you may want 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.
Younger children often adapt quickly. They will probably ask if this means you’re going to die and are satisfied when they are told no and can carry on with their childhood games. Their main concern is usually that their parents (or grandparents) will be there.
For some great books that might help them, click here.
Be aware that it can be tricky for children to accept the fluctuations you may experience – one moment you may be able to join in an activity with them, and then you may be ‘off’ and unable to participate. This can be frustrating for them so it is important to explain your symptoms if they are old enough to understand.
Some children are extremely keen to help but do remember that they are children, not carers, so try to do as much as you can for yourself and don’t give them too much responsibility or depend on them too much. And remember to show them how grateful you are for all that they do for you.
When to tell children
It’s a good idea to think ahead about when and where could be a good opportunity. You don’t have to make it a big occasion, but make sure it’s in a calm environment, free from distractions and give yourself and your children the time and the space you need. You may worry 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 on-going conversation – there is no rush to tell them everything at once. And as your Parkinson’s progresses and your child gets older, you’ll need to talk about different aspects. Starting the conversation as openly as possible will help children feel that it’s OK to talk about your condition as time goes on.
What should we tell them?
What you tell children 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. Try to avoid medical terms. Use the same kind of language as 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. Older children may want more information – and may even have questions you don’t know the answers to. Afterwards, check with them what they have heard so that you can make sure they’ve not misunderstood anything.
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. You may know that Parkinson’s is not contagious, but do they?
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.
Teenagers often react differently - they may feel angry but this is usually driven by sadness and a deep felt wish for you to be well again. They may become self-conscious or seem embarrassed, particularly with their friends, until they notice that people accept you as still the same person. Sometimes they may try to help too much which can cause tension.
They will probably just need a bit longer to understand their emotions and accept the news.
With thanks to the European Parkinson's Disease Association for the use of this material (EPDA).
Other sources of information and help
If you, or the young people in your house are looking for a clear but quite technical explanation of Parkinson's, you might like to look at this video:
Parkinson's disease - causes, symptoms, diagnosis, treatment & pathology
For a much more personal view of parenting two young girl's following her diagnosis aged 36, take a look at Natasha McCarthy's blog here. Her writing is from the heart, and chronicles the way in which she manages to walk the tightrope between honesty and not overburdening her children.
Another personal view of raising children whilst dealing with Parkinson's is given by neurologist Dr De Leon. You can read her blog here.
For more information on talking to children and young people about Parkinson's, look at the information on the Parkinsons.UK site here
This video from New Zealand shows a young family dealing with Parkinson's and contains the now famous poem written by a father to explain his condition to his daughter...