While caring for a loved one with MND can be very rewarding, it also involves many stressors. It can be difficult for carers to find time for themselves and since caregiving can be an ongoing challenge, the emotional impact can snowball over time. And so, it’s important to remember that carers also need to take time out to care for themselves so they can continue to provide the best care for others.
But first, what is carer burnout
If the stress of caregiving isn’t well managed then it can take a toll on other aspects of your life, such as your health, relationships, and state of mind and this can eventually lead to carer burnout. Carer burnout is when you are feeling emotionally, mentally, and physically exhausted. When you reach this point of exhaustion, both you and the person you’re caring for can suffer. That’s why taking care of yourself isn’t a luxury, it’s a necessity. Cultivating your own emotional and physical well-being is just as important as making sure your loved one is receiving appropriate and loving care.
So here are five of the best resources we’ve found to help carers of people with MND to avoid carer burnout:
#1 CarerHelp
A new website to support people in Australia who are caring for a partner, relative or friend living with a terminal illness.
CarerHelp features:
- Evidence based and practical information about symptoms of carer burnout
- How to get help on financial/legal issues
- Downloadable forms, tools and online learning modules for carers
CarerHelp has been developed as part of the Australian Family Carer Toolkit Project and it aims to ensure that Carers are more informed and better prepared for their role. The idea is that by providing carers with appropriate information and support, they will feel less distressed and more competent, improving their overall well-being. Find out more here.
#2 Carer Gateway
If you care for a family member or friend, then Carer Gateway could help you. Carer Gateway provides practical advice and support for carers as well as:
- Helping you to get the services and support you need
- Free counselling services over the phone
- Self-guided free coaching to help you in your carer role
Carer Gateway is an Australian Government initiative and can also provide information on respite and planning for an emergency. Find out more here.
#3 Carers NSW / Carers ACT
Carers NSW/ACT is a non-government organisation for carers in NSW and ACT and their focus is on improving the lives of carers. Carers NSW and Carers ACT work with all carers regardless of their age, location, life-stage or circumstances and can support by:
- Online training and information resources
- Providing counselling and support groups for carers
- Providing specialised information e.g. employee assistance program
- Support for young carers under 25
#4 Carer Gateway Community Forum
This forum is managed by Carer Gateway and provides a safe, anonymous space online for people to connect with other carers and to support each other. Discussion topics include self-care, relationships, money and work, tough times and a social space.Find out more here
#5 Carer Peer Connect
While face-to-face peer support is shown to be beneficial to carers, it’s not always possible for carers to attend a group in person due to the demands of their caring role, their geographic location and/or other commitments like full time jobs and family commitments. Carer Peer Connect provides online chat forums which discuss disability and illness specific issues as well as more general topics, such as managing relationships. Carer Peer Connect is centrally managed by Carers NSW and funded by Family and Community Services (FACS). Find out more here.
We hope these resources can help carers to find ways of managing their stress and emotional needs as well as providing practical information and peer support. Carers are also always welcome to call the MND Association information line on 1800 777 175 or to email us on