Huntington's VictoriaHuntington's Victoria logo

Hope Dignity Awareness
Huntington’s Victoria is the leading specialist service that supports individuals impacted by Huntington’s disease.

Information for Carers

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. This information sheet will give you an overview of simple strategies to maintain your wellbeing as a carer.

boy and elderly manWho 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 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 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 getting 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 aside time 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 of who to ask, contact Huntington’s Victoria who can provide you with guidance and support.
  • Don’t be too hard on yourself, no one is perfect. Recognise your day to day achievements.
  • Plan time for yourself
  • Take regular breaks from caring
  • Build supportive relationships
  • Talk about how you feel
  • Plan ahead and arrange respite before you are burnt out

Resources:

ACAH

Accredited by the Australian Council on Healthcare Standards until 15/07/2017

ACAH