Susan explains why dignity must remain central to a person's care. When it's not, it can impact communication and behaviour in a negative way.
Susan spent over ten years caring for her husband Tracy before he went into a home. As his disease has progressed, communication has become increasingly difficult. But Susan has tried to understand his wants and needs and what might be causing him frustration.
Through caring for Tracy, Susan learnt that people with Huntington’s disease can only process so much information at once.
One thing I think that's important with Huntington's is that you've got to give one instruction at a time. And I had to learn that. For example saying go to the toilet. That’s get up out of your chair, then walk to the toilet, then go to the toilet, which is three things he was processing. That was quite hard for a while.
Communication issues and behavioural outbursts can be caused by the person with Huntington’s being unable to do something, or not being able to explain themselves. Sometimes simple changes can help avoid an outburst if the person is unable to communicate what is upsetting them or what they are finding difficult.
For Susan, understanding what Tracy was struggling with was key to supporting him. "You need to be able to get inside the person and think, So what is it he's struggling with? What is it he finds hard?" she said. So finding practical solutions became an important part of Susan’s care.
I found lots of tricks that really helped him to stay independent, like having a push button kettle because he loved to make his own drinks. Because he couldn't put sugar in, he used to get angry with the sugar so I got sugar cubes so he could do it himself and didn't have to use a spoon.
Keeping him engaged with things that he is interested in and bring him joy was another important part of Susan’s communication and care.
Later in life he decided he loved metal detectors. So I got him the treasure hunting magazine every month, and his metal detector is in the room with him. He goes, beep, beep, when he wants to go out with the metal detector because that's the noise it makes.
As communication becomes more difficult, it’s important to remember the person before Huntington’s disease. Susan has always wanted to ensure Tracy feels like himself despite his condition.
He wants to still feel like a man you know, He's still a man, he's still a husband, he's still a dad. And I think that's the important thing is not just to see them as a victim, but just as a human being that's just got something wrong with him that makes them do weird stuff now and again.
Understanding why people get frustrated
Susan and Tracy had a difficult time when he was admitted to hospital. It was frustrating for Susan but because she, as Tracy’s wife and carer, understand both him and his condition so well, she was able to see why he was getting angry, throwing things and having behavioural issues.
This particular hospital truly didn't get Huntington's at all, not in any way, shape or form. I had to give a ton of information to them. We've got to bring his meals on a plastic tray. He keeps throwing the plates. I said, but you've left the clingfilm on the top. He can't pull the clingfilm off. That's why he's throwing this back at you, because he needs support.
Susan says that the person’s dignity must remain central to their care. "At the end of he’s a man and he's a proud man. It's why when he went to hospital, he would just throw everything because they did not treat him like a man."
Managing behaviour and communication changes
You can find out more about how a person's behaviour and communication are impacted by Huntington's disease. On the page below we share management tips for each stage of the disease, personal stories and frequently asked questions on this topic.