For many people looking after their family or friends, they may not immediately see themselves as a carer. This is particularly true during the early stages of progressive conditions such as Huntington’s disease.
As Huntington’s disease gets worse over time, the support that people need at the beginning can often be minimal. However, as the disease progresses, their friends and family members may have to take on more caring responsibilities to provide the support that they need.
The symptoms of Huntington’s disease
Huntington’s disease is a genetic condition that can affect multiple generations. It is caused by a faulty gene in the DNA that impacts the nervous system.
Like most diseases, Huntington’s affects different people in different ways, even within the same family. The three main areas affected by Huntington’s are:
- Cognitive thinking, including difficulties in planning and thinking
- Movement, including unintentional movement and difficulty moving
- Mood, including changes to personality and temperament
Whilst people can live with the gene for Huntington’s disease for years without symptoms, they will develop eventually. This is typically between the ages of 30 to 50, however Juvenile Huntington’s can develop before the age of 20.
Providing care to your loved one
Helping someone with Huntington’s disease with their daily life can start out as a relatively simple task. As time progresses, your role may turn from a relative or friend who is helping out to a full-time carer as your responsibilities increase.
This can be complicated by the genetic nature of the disease. For example, it is possible that you could also be a carrier of the gene if you are caring for a relative. It could also be that you have been involved in caring for multiple generations of loved ones who have been affected by this disease.
As each person will experience Huntington’s disease differently, the care will depend on your loved one’s individual experience. Your responsibilities may include anything from support with movement or getting out and about to emotional support and guidance.
The latter can take a toll on those who are caring for a loved one, particularly if they are dealing with changes to their personality or mood swings. This is why taking the time for yourself is important.
Getting support as a carer is vital. Whilst many people wait until they hit a breaking point to get help, it is important to get the support network ready ahead of this.
Making sure that you are not alone in being a carer is vital. Support can come from other family or friends, your GP, or trained carers. This ensures that you are able to take a rest when you need to, so you don’t burn out in your role as carer.
You can also reach out to support groups for carers who are going through experiences like yours. This can help you to share the difficulties you may be facing with someone who understands on a deeper level.
It is also best to make sure that you get professional carers onboard. The earlier that this is done, the more preparations can be made for the progression of the disease, meaning care and support is available when needed. This not only takes the pressure off you, but also ensures that specialists are on hand to deliver the right support.
Our team can work alongside you and your loved ones to develop a care plan that is unique to their needs, symptoms, and lifestyle.
To find out more about the support we can offer to people diagnosed with Huntington’s disease, please contact our team today.