Nikita shares the communication changes she experienced with her mum and the importance of talking to your loved one even if they cannot talk back.
People sometimes assume that if somebody can't talk, they can't hear or understand either, but that isn't true. Mum had lost her voice, not her ability to listen. Our main approach was simply to keep talking to her. I knew she recognised my voice, and I told everybody, "Just keep talking to Mum".
Nikita has been impacted by Huntington’s disease all of her life. It has been in her family for a number of generations. Nikita’s mum, Lesley, had Huntington’s and Nikita cared for and supported her at home during the early and middle stages of the disease.
During the early and middle stages, Nikita says that their communication was quite normal. They started to notice changes in communication towards the later part of the middle stage. Her mum might nod or agree without fully expressing what she meant or fully understanding what was being said.
In one Personal Independence Payment (PIP) assessment*, the assessor didn’t understand the cognitive and mental health effects of Huntington’s and she was judged as fit to work and had her PIP removed. This is where support from a loved one is really important.
Although she could still communicate, she had started to notice changes in herself and wasn't as confident. She then began to rely on Nikita a little more when it came to speaking or getting her point across.
We still tried to let her communicate as independently as possible. When we appealed the PIP decision, I sat beside her while she answered questions. She sometimes looked to me to answer because she knew I could explain more clearly how she was being affected.
Nikita and her dad wanted to care for Lesley themselves and keep her at home for as long as it was safe to do so. As the disease progressed, she became increasingly frustrated and sometimes aggressive. Eventually, her needs became too great for them to safely manage at home and she needed 24-hour care.
This was very difficult for all of us because it was so different from the Mum we knew. We had to constantly remind ourselves that it was Huntington’s disease causing the behaviour – it wasn’t Mum. At times, she didn’t realise what she was doing either.
In the later stages, Nikita’s mum unfortunately began to lose her voice. The loss of speech was one of Lesley’s biggest frustrations as she was always a chatterbox. This was really difficult for her family to watch. It was heartbreaking for them if they found out from the home that they had missed her saying something while they were not there.
We didn't make a big issue of her losing her speech or continually draw attention to it. We carried on talking to her, knowing that she was listening. She communicated through smiles, facial expressions and a very good side-eye. She still had the mum look too. For us, communication didn’t stop just because her speech did.
Hospital and care and communication
Hospital was where Nikita’s mum showed more aggression. This was likely because she couldn't communicate. If staff didn't understand her and they sometimes cared for her without speaking to her which was upsetting to her and the family.
Even when she couldn't talk back, I asked hospital and care staff to continue speaking to her while supporting, changing or cleaning her. She loved learning about people, so they could tell her about their families or animals and she would listen. It helped her feel included, comfortable and at ease.
What are your tips for when communication becomes more difficult?
- "We tried to preserve her independence for as long as possible. Routine and predictability became increasingly important as she needed more support."
- "Understanding that a person may be unable to speak but can still hear, listen and understand. Continuing to talk to them can help soothe them when they're distressed."
- "New people could make her anxious. When somebody entered the room and said very little, she would tense up. Talking helped her understand who was there and what was happening."
- "Putting things on that they enjoy. For Mum it was particularly musicals. Her favourite was The Greatest Showman, which was sometimes played several times a day."
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.
*Personal Independence Payments
We know that PIP assessments can be difficult and daunting. They have the added risk of claims being rejected due to assessors not understanding Huntington's disease, or the person being assessed not being able to answer the questions properly or being in denial about symptoms.
Our campaigning team have done a lot of work to try and make things easier for our community. One thing they are campaigning for is to make things easier for those applying for PIP and scrap the reassessment each year.
We have also done work around educating the companies that do the assessments to help them to understand Huntington's disease, the symptoms and the effect on the person.
You can read more about this below.
The impact of working with professionals
Professionals