Advice for Carers of People with MND
Caring for someone with Motor Neurone Disease (MND) is a role filled with deep love, responsibility, and often significant challenges. Whether you provide hands-on assistance or emotional support, your role as a carer is essential—and you don’t have to face it alone.
At MND Queensland, we’re here to support you every step of the way with guidance, practical tools, and emotional support.
Contact our Carer and Client Services Coordinator at carers@mndqld.org.au or call 1800 777 175 / 07 3372 9004 — we’re here to help.
Understanding MND
Learning about MND is an important first step after a diagnosis. It helps you manage the disease and prepare for the changes ahead. As a family or friend carer, being well-informed and receiving advice from the start is vital.
Learn more about MND at www.mndqld.org.au/page/64/what-is-mnd.
Understanding Your Role as a Carer
You might not think of yourself as a "carer," but if you help someone with MND manage daily life, you are one. Recognising this role is the first step toward accessing support, resources, and your rights.
Explore resources through Carer Gateway to help you on your journey.
www.carergateway.gov.au
Looking After Yourself
Caring for someone with MND can be physically and emotionally demanding. It’s crucial to prioritise your own wellbeing by managing stress, setting healthy boundaries, and looking after your physical and mental health.
Carers often find it difficult to take time out, but self-care is essential. Reach out for support from family and friends—they are usually more willing to help than you might expect.
Consider the activities and people that bring you joy and make time for them regularly. This could be as simple as a weekly coffee with a friend, a yoga class, or a hair or nail appointment.
In addition to informal community support, respite care—both day and overnight—can be arranged to give you a break.
Being Involved in Decision-Making
Understanding the benefits and risks of different treatments helps you make informed decisions. Patients and family carers should be actively involved in healthcare decisions and feel comfortable raising concerns or asking questions.
Advance Care Planning involves having conversations with your loved ones and making wishes known early. This may include:
- Advance Health Directives
- Enduring Power of Attorney
- Advance Care Plans
- Writing or updating of Wills – MND Queensland has partnered with Gathered Here, Australia’s most-trusted free online Wills platform. Create your free will online by clicking here.
- Funeral Planning – you may like to consider asking attendees to donate to MND Queensland in lieu of flowers. Our team can assist to create an In-Memory page to honour your loved one. www.mndqld.org.au/page/87/give-in-memory
Learn more about advance care planning at Carers Australia.
www.carersaustralia.com.au/information-for-carers/advance-care-planning-and-advance-care-directives/
Practical Tips for Daily Care
Daily care may include mobility support, managing communication changes, nutritional needs, and personal care tasks. Our advice covers strategies, equipment recommendations, and tips to make caregiving more manageable for both you and your loved one.
Read more about Living Better for Longer - www.mndaustralia.org.au/mnd-connect/information-resources/mnd-evidence-based-treatments-and-support-an-overview
Accessing Services and Support
Providing personal care—such as helping with transferring, dressing, washing, toileting, and feeding—is a major part of caring for someone with a life-limiting illness at home. This can feel overwhelming, and it’s okay to ask for help.
Family, friends, and community services can share the load. If caring impacts your ability to manage household chores like cleaning or gardening, support may be available.
- If you’re over 65 (or over 50 for Aboriginal and Torres Strait Islander people), you may be eligible for government assistance through My Aged Care – Call 1800 200 422 or visit www.myagedcare.gov.au
- If you’re under 65 (or under 50 for Aboriginal and Torres Strait Islander people), you might qualify for support under the National Disability Insurance Scheme (NDIS) - Call 1800 800 110 or visit www.ndis.gov.au
Our specialised MND Advisors provide tailored support, including:
- Guidance on applying for home help funding
- Assistance accessing suitable equipment
- Connecting you with local service providers
Who to Contact for Support
Caring for someone with MND can be complex. You may want to access:
- General Practitioner (GP)
- Social Worker
- Specialists involved in care
- MND Advisor
- Grief Counsellor
- Respite Care Services
- Pharmacist
- Speech and Language Therapist
- Occupational Therapist
- Dietitian
- Physiotherapist
- Respiratory Team
- Complementary Therapies (massage, acupuncture, reflexology, etc., alongside conventional care)
- Residential or Nursing Home Care (if home care needs increase)
- Specialist Palliative Care
Tips for Staying Organised
Keep a list of key contacts handy—by the phone or on the fridge—to make accessing help easier.