For carers week 2023, we spoke to Diane who cares for both her daughter and her ex husband.
Please tell us about your caring experience
"My journey with Huntington’s disease started 14 years ago when my ex-husband, the father of our daughter was diagnosed. Although at the time, I was remarried with another daughter, I didn’t hesitate to bring him into my home and care for him. He remained with me for 12 years until he required additional care, but even though he is in a facility, I still take care of him as much as I am able to. Our daughter, Brittany was diagnosed shortly after giving birth to my granddaughter, at the age of 29. Brittany became symptomatic during her pregnancy and although she hadn’t been tested, I knew in my heart that she too, would be gene positive. I wanted my daughter to enjoy her pregnancy and the experience of being a new mum, but after six months, the symptoms became more noticeable and I convinced her that we needed to go for genetic testing, which of course came back with a positive result. Unlike her dad, Brittany’s symptoms presented sooner and with a vengeance in a short amount of time. She was diagnosed seven years ago and has been with me since her diagnosis. She is currently 36 years old, with severe chorea and speech issues and is solely dependent on me for every part of daily living. Watching my little girl lose not just her ability to care for herself as a normal young woman, but the loss of her cognitive ability is the absolute worst thing that any mother can live through. I made the decision to retire from my career two years ago to stay home with her full-time as she was then at the point where she was no longer independent in any capacity."
What advice you would give to other carers?
"My advice as a caregiver is to do at least one thing for yourself every day. It would be as simple as sitting outside with a cup of coffee, to taking a bubble bath after your loved one has gone to bed. You may feel that you would never be able to handle being a carer for someone with a disease such as Huntington’s disease, but you will find the strength and surprise yourself on how much you actually can take on. Ask for help, and don’t be afraid that you will appear weak or incapable of caring for your loved one. It is an extremely difficult position to be in for such an extended period of time and you will need to give yourself grace and find resources to assist you. Here is my biggest piece of advice I will give to you, ALWAYS remember that as the disease progresses and you start to lose the person that was once healthy and thriving, and there is no longer the strong connection that you once shared, in their heart they still love you as they always have. It’s a cruel, devastating disease that nobody deserves, but everyone deserves to be loved through it."
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.
