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Huntington's Disease Youth Organization

How can I help my mum?

HDYO has more information about HD available for young people, parents and professionals on our site:

www.hdyo.org

Q. How can i help my mum who has the disease?

Ellie, 13. London.

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A. Dear Ellie,

Thank you for getting in touch, I’m glad you felt able to contact us.

You have asked how you can help your mum who has the disease.

It is hard to answer this question in detail Ellie because HD can be a very individual disease and I don’t know how it affects your mum. There are three main things I would suggest right now. But please get in touch if you have any specific questions.

The first thing I would say is get information about HD and learn about the different ways the disease can affect people. People with HD can change a lot as they become more unwell so it can be important to learn about how the illness is changing them and the different ways you may be able to help. Understanding more about the way the disease affects the person you love can help you think about how to react. I expect you will have looked at some of the information on our site and I hope this will have answered some of your questions. Some common questions young people ask are  – How does hd affect people? Why does my mum behave the way she does? What can doctors do to help? How do people with Huntington’s disease think? We have tried to answer these questions, but you might have specific questions about how the illness affects your mum. If this is the case then please write back to us. It is also important to remember that having HD is not your fault – or theirs.

The second thing I would say is that because people with HD can change a lot as they become more unwell everyone in the family might have to do things they aren’t used to doing. This can have a big impact on everyone, and you may have to help out more. It might not be like this for you Ellie, and that is fine. But if you do help to look after your mum you may be a young carer - you help to care for someone in your family who is not well. If this is the case find out if there is a Young Carer’s Group in your area. It is also important to make sure you still get time for yourself.

And that is the third thing I would say to you Ellie – it is really important to look after yourself too. This can be hard when you just want to look after the person you love, but it’s very important to take good care of yourself when difficult things are happening. Try to make time for things you enjoy and that are important to you - hanging out with your friends, playing your favourite sport, watching a good film, after school activities. There is a great book written by a group of young people from New Zealand which has a whole A to Z of things they like to do which help them deal with the stresses of HD – the book is called ‘HD and me’ and is available on the HDYO book shelf.

It is also important to talk to people about how you feel with good friends, family, people you can trust. If people you trust know what’s going on they can try and help you. You could show them this website so they can find out more about HD and what it’s all about.

There can be a lot of difficult and strong feelings to cope with when someone you love has HD – you might get sad, angry, confused, guilty, embarrassed, worried, anxious. All of these feelings are normal, but they can be difficult to deal with. It really can help to talk with people you trust. It might also help to learn about how others feel – it can be good to know you are not alone. You can do this through our site or by getting involved with your local Huntington’s Association.

It can be hard living with HD Ellie and I have only suggested some very general things to you. If there are certain things about how the disease affects your mum that you don’t understand then please get back in touch. I would also encourage you to contact your local Huntington’s Association to find out what support they offer young people. Thank you again for getting in touch. Take care.

Karen Keenan