Being a carer for a loved with MND can be both rewarding and challenging. As well as their partner/daughter/son/loved one, you're also a voice and advocate for their complex and progressive 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, as MND progresses, your loved one’s needs will increase and change. This means your workload can also increase.
The State MND Associations give direct services and support to people living with MND, their family and loved ones. 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.
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