Strategies to care for a loved one living with Huntington’s disease
Creativity and adaptability are important when devising how to help
My brother, Gavin, has Huntington’s disease. It causes problems with his cognitive, behavioral, emotional, and sensory skills. We’re fortunate to have support from a care adviser from the Huntington’s Disease Association, who has provided my family with strategies to help manage Gavin’s symptoms.
For instance, Gavin is currently stuck on saying no to most questions he’s asked. The adviser suggested that we start a conversation by asking a question that we know he’ll answer with yes. Then we can follow up with the question we really want to ask. This strategy might “unstick” his automatic response.
Since Gavin might oppose anything that disrupts his normal routine, such as medical appointments or visits from family and friends, we’ve been advised to give him time to prepare and move from one activity to another. To do that, we might select the date and time of his appointment weeks in advance. Giving him control can encourage him to cooperate and balance the loss of control he feels over some aspects of his life.
Gavin also says we don’t listen to him. To address this, we try to tackle one problem at a time to avoid overloading him. We keep questions short, precise, and with limited choices. Then we give him plenty of time to answer, mostly to accommodate his slower processing skills. It gives him the attention he wants and makes him feel heard.
Reducing the amount of clutter in his home and keeping items in the same place also calms him and helps him remember where his things are. We try to encourage and prompt him to participate in tasks and routines, such as making a cup of tea and taking a shower. We’ve also been advised to avoid crowded, noisy places that may cause an outburst of anger. When he goes for a meal with our mum, for example, she finds a quiet space away from other people.
He has routines and writes notes to himself, which helps him to remember things and regulate himself. He also writes in a diary. We help by adding reminders to his diary if an appointment or event is happening.
All of these are strategies to help Gavin in living with his Huntington’s disease.
While he’s quick to lose his temper, he can calm down just as quickly. It helps to let him shout and not interrupt him. We try not to reason, explain, or persuade him, which would only increase his anger. Sometimes returning to an issue at a later date may be necessary to give him time to process information and calm down. We try to identify triggers and avoid them.
I hope he’ll agree to meet with his neurologist, who can prescribe him some medication that I think could calm his anxiety and anger.
Being consistently calm and polite also helps to build a good relationship with him, so we hope this behavior will allow him to trust a person enough to listen and let them help him. Gavin is also more receptive to professionals approaching him.
He also becomes fixated on things. It’s impossible for him to wait because of his neurological condition. We try to address this issue quickly, and if we can’t remedy it straight away, we give a realistic schedule of when we will.
In one detail, I’ve noticed that Gavin is more likely to be angry later in the day. He says his sleep is disrupted, so fatigue could play a factor. Organizing trips earlier in the day or allowing quiet time for naps each day can really help. It’s also possible that he’s physically uncomfortable, which might heighten his anger. We try to keep an eye on any possible medical problems and handle them when he’ll engage with us.
We’re also trying to introduce a personal assistant to our care. At times Gavin’s been open to this idea, but other times he’s strongly opposed it. We hope to build his openness by starting with small amounts of help and letting him work at his pace. We’ve found that it’s best to avoid mentioning his need for help in connection with Huntington’s disease. It feels disempowering to him, particularly because he believes he doesn’t have symptoms.
Despite all these strategies, I’d be lying if I said they work every time, because they often don’t. But some days we do have small wins. Still, I get angry and feel guilty and frustrated at times. I blame myself if I haven’t handled things well and have missed an opportunity to achieve a good response from him. I think it helps to understand and keep in mind why he behaves the way he does and have these strategies ready, even if I don’t get it right the first time.
My brother cannot help his behavior or change it. Therefore, we must try to be creative in how we adapt to him.
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