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Huntington's Disease Youth Organization

How can I help keep my mum's mind active?

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

www.hdyo.org

Q. Hello, I am a carer for my Mother who suffers with HD and she is very reluctant to leave home. I am worried that if I don’t keep her mind active at home she will get very bored and give up. Can you help me with ideas at all? We live in a ground floor flat. Thanks

Amy-Jo, Young Adult, UK

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A. Amy-Jo,

This is a very common concern for family members and caregivers. People with HD may often appear to be bored or not interested in doing anything. This is referred to as Apathy. Apathetic people tend to become unmotivated or uninterested, as they begin to lack spontaneity and lose enthusiasm for things they once cared for. Despite being physically able they usually don’t have the same ‘Get Up and Go’ attitude they may have once had. The brain is changing and the ability to manage all the decisions to complete any task or activity can become exhausting. We have found that the people really like what is familiar and get set in their routine, becoming anxious with changes like trips outside of the home. But, with that being said, I still believe you need to continue to try! Suggest simple short outings like a coffee house vs. a sit down meal which can be more intimidating.

It’s great that you live on the ground floor! This will make mobility much easier for both you and her. As far as activities go, keep it simple. Watching movies, TV shows, playing board games, video games etc. It’s also important for me to mention that HD is somewhat of a mask. You may not always be certain if the person is happy or sad or something in between. But, they are always listening and processing what is happening around them, it just takes longer for them to respond. Generally, you will be the one carrying the conversation or playing the game, but she will be right there watching and taking it all in!

P.S.: Just a note, that apathy and depression seem similar. So, be aware and talk to her doctor if you have any further concerns. Not all HD people are depressed! Most of the time they are ‘Simply in the Moment’

Good for you for reaching out to HDYO and know that you are not alone!

Gwen, HD Care worker specialist