We spoke to Emma about her experiences around being her dad’s sole carer and what it is like when your loved one will only accept care from you.

Tell us a little bit about your background and where you are from?

"I’m originally from Cornwall and lived there until the age of 11. My parents separated when I was two years old but I saw my dad regularly. In 2002, my mum and I decided to move away from Cornwall and moved to Wiltshire; however, my brother stayed with my dad. I used to spend every school holiday down in Cornwall, it was so lovely! When I was 19, I went to Plymouth University for a year to study Occupational Therapy - the perfect location between mum and dad! I decided to leave university before completing my degree, but if I knew then what I do now, occupational therapy would be an extremely useful degree to have!"

What's your connection to Huntington's?

"Huntington’s disease is on my dad’s side of the family. Growing up we always referred to my grandad as the ‘grandad who can’t keep still’. Me and my brother were forever asking ‘why does grandad keep jigging?’ The doctors put his chorea and other symptoms down to Parkinson’s, but I believe he was finally diagnosed with Huntington’s in his late 60s. After a couple of years, his symptoms had advanced considerably and he was moved into a care home, he, unfortunately, passed away with pneumonia in early 2012. In 2014, my dad’s colleagues noticed that he wasn’t the same Andy as usual. They noticed he was aimlessly wandering around the workshop and found it difficult to focus on things. They pushed for him to have a genetic test which unfortunately came back positive.

My dad was 48 years old when he first started showing symptoms. I’ll admit at this point I still didn’t really understand Huntington’s and didn’t appreciate the impact it was going to have on our families lives. My dad was still living in Cornwall, and as I was working full time, I couldn’t visit as often as I used to. However, in 2015, we decided to move my dad up to Wiltshire to be closer to me and my brother who had moved up a few years before. This was the best decision we could have made! After dad moved and I was spending more time with him, I began to realise the seriousness of this disease and decided to begin the process of genetic testing for myself. I began the process in September 2015, I remember going to see the GP and asking for a referral, he admitted he wasn’t sure what Huntington’s disease was and needed to do some research himself. I got my test results in May 2016, and I’m one of the lucky ones who got a negative test result meaning I haven’t inherited the faulty gene - my brother was not so lucky and sadly got a positive test result in September 2016 at the age of 27."

What was life like before your dad tested positive for the Huntington's gene?

"Life was just...normal, but wonderful! Now it is full of worry. It’s so important not to take anything for granted and I just wish we would have had more time to make more memories before Huntington’s shook us."

Were you aware of Huntington’s in your family before symptoms arose?

"Before my grandad was diagnosed later in life, our family had never heard of it. Sometimes being aware makes it more difficult, you’re constantly looking for symptoms."

What is daily life like for you now as a carer and how has your view of life changed after your experiences with Huntington’s?

"I’ll be honest, my daily life is stressful and I sometimes feel like the weight of the world is on my shoulders. Up until a couple of months ago, my dad refused any professional care. My brother struggled to help as he feels he is looking at his future self. I completely understand this, and never push him to help. This means for a long time it was just me caring for dad. I have been fighting with the Adult Care Team within Social Services for a couple of years and they are finally beginning to listen to me - but it has been very hard.

Nowadays, I go into panic mode every time my phone rings in case something bad has happened. I’m constantly thinking about dad and what I need to do. I'm constantly worrying that I don’t do enough for him and that I hope he’s happy - he lives alone in sheltered housing which makes me feel guilty if I’m not there with him for company. My view of life is very much ‘you’ve only got one life...so live it!’ Myself and my husband got married during the pandemic with just 15 family members. We could have postponed it but my husband knew how important it was for me to have my dad walk me down the aisle - I was so lucky to have experienced that and it will be a memory I will treasure forever."

As a carer for a loved one affected by Huntington’s disease, how do your friends and family support you physically or emotionally?

"Physically it’s very difficult for anyone to help and support as dad refuses care from anyone other than me - my nearest and dearest do offer though! I’m not very good at asking for help or telling people I’m struggling, I usually wait until it all gets too much and tend to have a bit of a breakdown over it - then give myself a good talking too and carry on! I get a lot of emotional support when I do open up to my friends and family, I just find it hard to lean on people. My husband is extremely supportive, and my dad adores him! My mum is also a huge help to me emotionally! Huntington’s is an extremely lonely disease, there isn’t a lot of awareness and I have lost friendships due to my caring responsibilities. Partly due to me not being open and honest and admitting I was struggling, I just withdrew myself and slowly got excluded from things."

What is the one thing you find most useful and supportive as a carer of someone affected by Huntington’s disease?

"I have found the social media Huntington’s community very useful! It’s been a way of connecting with people who may understand how I’m feeling and be able to offer support if I’m struggling with care or don’t know what the best thing to do is."

Do you have any advice for others who are having similar experiences to yourself?

"Talk. Reach out to people who are going through something similar, that old cliché ‘a problem shared is a problem halved' is true and it has helped me massively."

Thank you to Emma for sharing her experience with us. We hope that sharing her story will help others within the community. Please email us if you have your own story to share.

If you are affected by Huntington’s disease and are in need of support or advice, please contact us on 0151 331 5444 or email info@hda.org.uk. Our dedicated phone line is open 9 am – 5 pm, Monday – Friday with Specialist Advisers waiting at the other end to offer you support.

If you are a carer for a loved one, you can find information on how to get support here.