Supporting someone living with MND can be both rewarding and challenging. Whether you are a family member, friend, or support worker, you may play and important role in speaking up for them and helping with their changing care needs.
Becoming a carer can mean:
an enormous change in the relationship between you and the person with MND
a need to deal with many different emotions, feelings and responsibilities at the same time
needing to do everyday things in different ways – e.g. helping with mobility, meals and other needs.
Giving care is often a very steep learning curve. Some of the things you will need to learn about include:
MND symptoms and how to manage them
MND clinics
equipment
service providers
My Aged Care or NDIS
planning ahead
Over time, the person livign with MND will need more help with daily life. This means the support you provide may also change.
The State MND Associations give direct services and support to people living with MND, their family and loved ones, including support groups. Calling the MND Info Line on 1800 777 175 (9am to 4.30pm Monday to Friday) will link you into the services they provide.
A Carers Australia member organisation is available throughout Australia (call 1800 422 737 for your states' carers organisation) and can help carers with:
counselling
information and resources
education and training
carer support groups
carer support and programs
Carer Gateway is an Australian Government program providing free services and support for carers. Each region in Australia has a Carer Gateway service provider. You can contact them by phoning 1800 422 737. The Carer Gateway has staff that can talk through what support and services are available in your area.
Services provided by Carer Gateway include:
phone counselling
an online carer forum
self-guided coaching and skills courses
skills and information
emergency respite plans. Having a plan in place means that if something goes wrong, the person you care for will still be looked after.
Planning ahead and addressing symptoms as they arise will help support you in your caring role. Your healthcare team can be a great source of support in helping you and your loved one manage symptoms as MND progresses and needs change. For some people this will be through a multidisciplinary team at an MND clinic. For others, care is given through a local nursing, community or palliative care service.
The CarerHelp website provides resources and information for people caring for a loved one at end of life. Palliative Care Australia also has a range of information available for carers and links to palliative care services in your area.
Friends and family can also be a great source of help and support. However, they may be unsure of how to help and what to do. You may find it helpful to create a list of things friends and family could do to help you and your loved one should they ask how they can help. Setting up a roster, a WhatsApp group or downloading the HELP App might also be useful.
The State MND Associations organise MND information and education sessions throughout the year in various locations around Australia. The events are for people with MND, their family and friends. There is usually no charge to attend but you may have to register before the event.
Some events are face to face with an audience and others are virtual events. Some of the sessions are recorded and can be viewed after the event.
You can also go to our Living with MND and Information resources web pages to learn more about MND.
Acknowledgements
Information on this web page is based on evidence and information from:
Aspects of Care: for the Primary Health Care Team, MND Australia.
Evidence and recommendations were also drawn from MND NSW Carers Kit, Mayo Clinic, Health Direct, Australian Centre for Grief and Bereavement, Carers Australia, Care Search, Relationships Australia, Healthy Living (SANE Australia), RACGP Aged Care Clinical Guide (RACGP), Five Steps to Mental Wellbeing (NHS Scotland), 10 Tips to Staying Mentally Healthy (Better Health Channel) and the VicHealth Guide to Healthy Living Apps (VicHealth).