Carer Support
You are considered an MND carer if you provide unpaid emotional, psychological or practical support to a family member or friend who is living with motor neurone disease.
Maintaining your health and wellbeing will support you to manage the caring role. It is important you have access to information about MND and you share your experience with others. It is also important that you relax, unwind and recharge.
By joining the MND NSW Carer Program, you will:
- be provided with a safe space for you to tell your story, hear from other carers, ask questions and seek information
- be invited to events designed to support the needs of MND carers
- hear from professionals about topics related to MND and the caring role
- learn about self-care and wellbeing.
Join now
Complete our Get Support: Intake Form and we will send you a Service Agreement to review and sign.
The Carer Program is free to join and is available to carers who support a person with MND residing in NSW, ACT or the NT.
Carer Program Activities
The kitchen table is the heart of the home. It symbolises conversation, connection and togetherness. Attending a support group and connecting with other carers, sharing experiences and tips can support carers to feel less isolated and better equipped to handle the caring role.
Join the Carer Program and receive an invitation to our virtual kitchen table. The online support group occurs twice per month. The next support group dates are advertised on the events page of our website.
Learn from other carers as they share their experiences. You are not alone.
“The Carer Kitchen Table Support Group provides a sense of connectedness and friendship. It gives me the opportunity to share my story with people who truly understand it because they have their own similar story.” Feedback from members of the group March 2024.
Throughout the year we host a range of webinars and events for MND carers. Events are advertised on the events page of our website.
It is important that young people are provided with information about MND. It is also important that they access the services and supports they need so they can manage the emotional and psychological impact of supporting a family member who is living with MND. The youth hub has resources designed for young people and links to other organisations that provide support to children and young people.
Parental guidance is recommended when accessing the National Youth Hub.
The Day of Hope and Remembrance occurs each year in June. All members of the MND community are invited to attend the MND awareness event.
The purpose of the event is to gather in:
- hope for a future without MND
- solidarity with the people and families currently battling the disease
- remembrance of those who have died.
The event includes a guest speaker and a short ceremony where we light a series of candles on behalf of different groups of the MND community and hear stories of courage, resilience and hope.
There is time for the MND community to connect and to dedicate a blue cornflower to someone with MND in hope for a cure, or in remembrance.
An important part of this event is the photographic display of people with MND called the MND March Of Faces. The display includes over 400 photos of people from NSW, ACT and NT who are living with MND and people who have died from the disease.
For more information about submitting a photo visit the March of Faces page of our website.
Check the events page on our website for details of the next Day of Hope and Remembrance.
Carer Tips
Carer Gateway provides emotional, practical and tailored support for carers.
Services include counselling, coaching, online courses, tailored support packages and emergency respite. They provide support to young carers as well as bereavement support, and support for those caring for individuals with dementia.
Find out more: 1800 422 737 or Homepage | Carer Gateway
Respite is a service avaiable to carers so they can take a break from care giving responsibilities.
Respite may be planned or it may be required in an emergency. It can be for a short period, a few hours in the day or longer, including overnight.
There are a number of different respite options, they include:
- in-home respite care
- centre-based respite care
- overnight or weekend respite
- residential respite care
- emergency respite.
You may be able to access support for respite via the National Disability Insurance Scheme (NDIS) or My Aged Care (MAC):
Carers Gateway may also support you to access planned and emergency respite.
More information
Caring for a person living with MND can be overwhelming and can take a toll on your physical, social, and emotional wellbeing. There are many ways to take care of your emotional wellbeing and physical health therefore, it is important to find what works for you.
Self-care tips for your emotional wellbeing and physical health:
- regular exercise
- ask for support from family and friends
- access respite
- call a friend
- take a walk, get some fresh air and sunlight
- listen to your body and rest when you need to
- journal or write down your thoughts
- talk to a counsellor
- take a moment to focus on your breath.
Contact Carer Gateway for access to free counselling or ask your GP for a mental health care plan to access 10 Medicare-subsidised sessions.
Ask for support from family and friends
If you have family members and friends available to support you, think about the practical assistance and tasks they can support with.
Some practical tasks may include:
- school pick ups and drop off
- providing cooked meals
- maintaining the lawns and gardens or helping with other household chores
- picking up medications
- collecting the mail
- putting the bins out
- buying groceries.
Members of the Carer Program have shared positive experiences with an app called Gather my Crew which can be used to coordinate support from family, friends, neighbours and colleagues. MND NSW does not endorse the use of the app or guarantee any experience using it.
It's okay to say no
It is okay to set boundaries around visits from friends and family members.
The Carer Kitchen Table MND Support Groups are available to you to stay connected and build new relationships with people who are caring for a person living with MND.
"Being a carer is both rewarding and exhausting, and one of the biggest lessons I’ve learnt is this - ‘no’ is a full sentence. You don’t need to justify it, explain it or feel guilty. Protecting your energy means you can keep showing up for the person you love." Anthea Smith, 2025, MND Carer
Storytelling and sharing experiences is a powerful way to connect and learn from others who are sharing similar experiences. It can support carers to feel connected, heard and understood.
The caring role is deeply personal and although MND carers may share similar experiences, your stories are unique.
There are a few ways you can share your story.
You can attend the Carer Kitchen Table Conversations: Online MND Support Group to have discussions with other carers. Many carers feel great benefit in having someone to talk with who understands what they are going through.
You can write to us and share your story in written or video format.
Here are some examples of MND carers sharing their stories and experiences:
You can share your story with us by speaking with the MND Carer Coordinator, contacting 1800 777 175 or
National Lived Experience Network
The National Lived Experience Network is coordinated by MND Australia. It is another way to share your experience and be involved in activities that relate to care, advocacy, information development or research.
An emergency care plan makes it easy for someone to take over from you in a hurry. It has all the information about the person you care for in one place, so you can get it quickly and easily.
The emergency care plan has:
- emergency contacts
- the care needs of the person you care for
- medical information and contacts
- a medicine list
- carer emergency cards.
Emergency Care Plan | Carer Gateway
Know who to contact
MND Advisors provide support to people living with MND and their families. They can help you navigate the health system, provide information about MND as well as assist you to connect with health and community care professionals in your area.
Contact Info Line on 1800 777 175 to find out more about the MND Advisor service.
A person living with MND will have a number of different health and community care professionals involved in their care. More information: Care Team
To speak with a registered nurse for non-life-threatening health concerns call Health Direct 1800 022 222
It is a good idea to have a list of key contacts and keep in a handy place, by the phone or on the fridge.
Other carers have suggested the list should include a friend or family member who lives close by, as well as the number for power supply issues in your area.
In an emergency, call triple zero, dial 000.
Information resources
- MND NSW: About MND
- MND Australia: MND Connect
Education
We offer a range of education programs for people living with MND, families and the MND workforce.
Visit the education page of our website to learn more about:
- Newly Diagnosed Info Session
- MND Upskill: Living and Working with MND
- The MND Hub for online courses
- Special Interest Group Workshop
- Inservice
Education from other organisations:
It's helpful to know where accessible public facilities are located and that you have a key to access those which are sometimes locked.
Master Locksmith Access Key (MLAK)
People with a disability are able to purchase an MLAK key that will open all doors, toilets, playground equipment and other facilities fitted with a lock that uses the special MLAK cylinder, including:
- Disabled toilets that are locked
- National Parks
- Many Council municipalities
- Elevators at railway stations
- Changing Places facilities
- Liberty swing.
Find out more about MLAK: Master Locksmiths Association of Australasia Limited - MLAK
You may be able to purchase the key via your Local Council. Some Council's offer a discount.
National Public Toilet Map
The Australian Government's National Public Toilet Map is a handy tool to search your area, or if you're planning a trip away. The map has icons to indicate where accessible toilets are found as well as those that require the MLAK key.
View the map: National Public Toilet Map
Changing Places
Changing Places facilities are designed for people living with high support needs and are located across Australia.
Find a Changing Places facility: Find a Changing Places toilet | Changing Places
For people living with MND, swallowing food, liquids, medications and saliva can become difficult. Difficulty swallowing is known as dysphagia, and it is a common symptom of MND. Around two thirds of people with MND will experience dysphagia.
Some people living with MND require modifications in food texture and consistency to make it easier to chew and swallow.
These modifications and changes doesn't mean food needs to be bland and uninteresting. Modified meals, including pureed foods, can be delicious.
MND UK has a handy eating guide which includes a number of recipes and tips: Swallowing, eating and drinking | MND Association
Contact
- It's all about the food not the fork!
- Lobster for Josino - Carer Resource
- Don't give me eggs that bounce
Try using specialty moulds for any pureed foods to help the food look more palatable. You can buy moulds from your local cooking shop or from stores such as Flavour Creations and Puree Food Moulds.
Something tasty to try: Avocado Chocolate Mousse
This recipe idea was provided by one of our MND community members.
Ingredients:
Melted chocolate, ripe avocado, melted butter, dutch cocoa powder and a sweetener. They also added sour cream and honey, and the top-secret special ingredient, ground salt and a bit of pepper.
Their other top tip was, if you use dark chocolate (80% cocoa content), season with salt as it makes the dark chocolate even sweeter!
Method:
You can find several versions of this recipe online and modify it to your tastes and thickness needs. Essentially you blend all the ingredients in a blender, pipe into serving dishes or coffee cups, and top optionally with double cream or custard or both and grate nutmeg over it and devour!
If the person you care for is experiencing changes, always consult your health care team before trying something new.
Financial assistance
Services Australia has a range of payments and services if you provide temporary or ongoing care and assistance, and if you need to take time off work to care for someone.
Caring for someone - Services Australia
Financial assistance for carers include:
- The Carer Payment is for someone who is unable to work because they are caring for another person full time.
- The Carer Allowance is for a person providing extra daily care to someone with a severe medical condition. This can be paid along with the carer payment.
- The Carer Supplement is an annual payment for a person who has caring responsibilities and is accessing certain carer or Department of Veterans’ Affairs payments.
State and territory governments offer discounts and subsidies for people living with disability and their carers, including:
Find a full list: Discounts and subsidies in your state if you have disability | myGov
My Aged Care
My Aged Care has information about costs associated with accessing services, there is also financial hardship assistance available.
Working out your costs | My Aged Care
Moneysmart
Moneysmart, by the Australian Government, helps you make money decisions with free tools, tips and calculators.
Planning ahead
Advance care planning is about making your wishes and preferences known now for your future care.
It includes:
- Talking to your loved ones and health care team
- Putting legal documents in place that reflect preferences, including an advance care directive.
- Helping others understand what matters most to you.
More information for carers: Advance Care Planning and Advance Care Directives - Carers Australia
Important documents for planning ahead:
- Advance Care Directive is a legal document detailing future decisions about medical care.
- Enduring Guardian is a legally nominated person who can make lifestyle, health and medical decisions.
- Enduring Power of Attorney is a legal representative appointed to manage financial and legal matters.
- A will is a legal document with directions about important things such as inheritance, your estate, or the care of children.
- Superannuation Binding Death Benefit Nomination is a form which allows your remaining super to paid to the person of your choice. It is important to check with your super provider as rules can vary.
Carer Gateway Counselling Service
1800 422 737
Carer Gateway offer bereavement counselling.
GriefLine
1300 845 745
Free, compassionate and confidential support every day of the year.
Griefline - Grief Support - You're Not Alone
LifeLine
13 11 14
To support with emotional distress, crisis support and suicide prevention.
Other resources
- Palliative Care Australia: Understanding grief
- GriefAssist: Grief Factsheets and Information
- Coping With Grief After Voluntary Assisted Dying: A Guide For Family And Friends | Griefline
Palliative care is more than end of life care. It is a family-centered model of care that focuses on quality of life. It is for everyone who has a life limiting illness.
Although eligibility and services differ from area to area, palliative care services generally include support with pain relief, sensitive family discussions and advanced care planning.
It may also include support with meeting cultural obligations as well as emotional, social and spiritual concerns. Counselling and grief support may also be provided, as well as access to other services and respite care.
We know that early access to palliative care can support better quality of life for people living with MND.
- NSW Government: Palliative care aims to improve quality of life
- ACT Government: Palliative care services - ACT Government
- NT Government: Palliative care | NT.GOV.AU
What does palliative care cost?
What does palliative care cost? | Australian Government Department of Health, Disability and Ageing
Other resources
Resource Library - Palliative Care Australia
A range of resources and tools for people living with a terminal illness and their family, friends and carers.
Palliative Care – Caring for our mob at the end of their life
A short video about palliative care among the Aboriginal and Torres Strait Islander community
Palliative care – supporting patients & family
Video for Aboriginal and Torres Strait Islander health professionals on how best to support a palliative patient and their family
Other helpful websites
CarerHelp is designed to assist people who are caring for someone who is at the end of life.
CareSearch palliative care knowledge network provides evidence-based information about palliative care. Includes resources in different languages.
The Disability Gateway has information and services to help people with disability, their family, friends and carers, to find the support they need.
Dementia Australia has a range of information and support for carers.
Nationwide, 24-hour dementia carer support | Dementia Support Australia
Cognition, Thinking & Behaviour in MND | MND Australia includes information about cognitive and behavioural change in MND, signs, symptoms and support as well as information about frontotemporal dementia or MND FTD.
MND Australia is the national peak body for MND care, advocacy and research.
MND Australia has a list of current research and clinical trials, as well as a range of information about MND, resources and tools.