The role of a carer adds value to the quality of life of the person being cared for. Caring for someone with Huntington’s disease (HD) is a worthwhile but also extremely challenging role. Due to the complex nature of HD, it is easy for a carer to quickly burnout. The information below will give you an overview of simple strategies to maintain your wellbeing as a carer.

Who is a carer and what do they do?

A carer is someone who provides unpaid, ongoing assistance and care to a person with HD. Due to the hereditary nature of HD, a carer may be looking after more than one member of the family at the same time. A carer can be anyone from a parent, partner, child, sibling, close friend, neighbour or someone in the person’s close social network. A carer’s role is often defined by the needs of the person they are caring for. For example, it can be as simple as regularly assisting someone with their grocery shopping to helping with more complex tasks such as assistance with dressing, lifting, showering, toileting, etc.

Supporting yourself as a carer

Monitoring your own wellbeing is fundamental in your role as a carer. It is easy to overlook the importance of self-care because your focus is often on the person you are caring for. However, in order to effectively fulfil your role as a carer, it is critical to make sure you take the time to care for yourself. Always remember, you know what will work best for you.

Important tips to keep in mind:

Take time to regularly reflect on your own wellbeing and take note of when you’re not feeling okay. You can do this by asking yourself some simple questions:

Am I able to get enough sleep and exercise?

Am I eating regular, well-balanced meals?

Am I able to take time out from caring and work to pursue my own interests?

Do I have a supportive social network?

Do I set time aside to relax?

If you are concerned by changes you have noticed in yourself, there are ways to address these issues. Don’t be afraid to ask for help.  If you’re unsure who to ask, contact Huntington’s Victoria who can provide you with guidance and support.

  • Don’t be too hard on yourself, no is perfect. Recognise your day to day achievements
  • Plan time for yourself
  • Build supportive relationships; consider a peer to peer support group
  • Talk about how you feel
  • Plan ahead and arrange respite before you are burnt out. If you would like to discuss how you can access respite support please contact us for some guidance and support.