Caring for a loved one with MND

Each person is unique and reacts emotionally in their own way. Caring for someone with MND can be overwhelming.

It is not uncommon to experience the following:

• a confusing mixture of strong emotions
• finding it hard to talk about such powerful and personal emotions
• having to think about ways you can share your feelings.

Research shows that caring has an adverse effect on a carer’s physical, social, emotional and financial wellbeing. Being a carer is a marathon, not a sprint. To endure, you need to be supported so that you can take care of your own health.

Some carers have skills and experience caring for others. They may be better able to deal with the stress and related impacts of caring for people. Others are at the start of their journey and still learning what works best for them.

There are many things you can do to help keep your mental health and wellbeing. Some of these include:

• making time for relaxation activities into your schedule
• talking with health professionals
• getting help with basic things around the house
• asking others for help.

A good first step is getting more information. Some great sources of information and advice can help with your wellbeing, including:

• calling the MND Info Line on 1800 777 175 to learn what support is available for you as a carer
• talking with your MND Association and your healthcare team to learn about MND, the services available, and how you can be supported to learn the new skills you need day to day
• attending an MND Association support group - call 1800 777 175 to find out more about groups in your area.

Ways to build relaxation activities into your schedule include:

• making sure you spend some time each day doing the things you love
• eating well and exercising regularly
• exploring activities like meditation, yoga, breathing exercises and muscle relaxation techniques
• listening to your body and resting when you need to
• avoiding caffeine close to bed time
• having warm baths before bed.

Community support

Services and support in your local community can reduce stress and the physical burden of the caring role. Try to:

• hand over some of the more tiring physical day to day activities like showering, cleaning and lawn mowing to others
• think about using regular respite care to allow you to do something you enjoy and to rest and relax. Do this earlier rather than later as it allows the respite provider and your loved one to get to know each other
• see your general practitioner (GP) about your own health – get regular check-ups raise any concerns or changes with your health.

For more information see Types of Care at Home and Government support & benefits. These pages outline eligibility criteria and how to access My Aged Care, NDIS, respite care and financial support such as the Carer Payment and Carer Allowance.

Apps for health and wellbeing

A range of evidence-based smartphone apps help you manage your health and wellbeing. Many of these are available for free or at low cost, including:

• BeyondNow
• ReachOut Breathe
• Recharge
• Pacifica
• Smiling Mind

Stay active

Physical movement and activities relieve stress and help you manage difficult emotions. Make sure that you:

• minimise the physical strain on you and your body by using specialist MND equipment for your loved one
• maintain your usual exercise activities and hobbies
• take time to go for a walk, or sit quietly and reflect on your thoughts and feelings.

The MND Association has a number of short audio and video activities to help support carer wellbeing with mindfulness, meditation and gentle exercise.  

Help is available anywhere, any time

If you are having distressing and intense thoughts and feelings, there are great sources of confidential help to help you understand what’s going on, and feel more in control:

• your GP who can refer you for counselling if needed
• Beyondblue on 1300 224 636 (24hours/ 7days a week)
• Lifeline on 13 11 14
• Mindspot on 1800 61 44 34
• Relationships Australia on 1300 364 277

Stay Connected

Staying connected with others can also help reduce stress. If you can, try to keep taking part in activities you enjoy such as local sporting clubs, libraries, book and movie groups.

If you are working, talk to your employer about flexible work and other options to help you keep working while supporting your loved one. Service providers and others involved in caring for your loved one can help to develop a schedule to support your working day.

If you can keep learning and developing new skills, that can help too. There are a range of online courses, or virtual exhibitions and tours that you and your loved one can enjoy together. Some examples include:

• MOOCs
• Australian Centre for the Moving Image
• Open Universities Australia
• National Museum of Australia Online

Talk about how you feel with your loved one

Sometimes, you may feel that your loved one is expecting too much from you. Try to talk about how you feel. When having hard conversations it may help to:

• find a place and time to talk without distractions (e.g. a quiet room, a place without many screens or devices)
• talk about what’s working and what’s not, and the impacts they have on you
• try to tell your loved one how you feel and think, even if it’s difficult
• listen to what your loved one says and understand what they feel and need
• express what you need and see if you can work through any differences or tensions.

It may also help to talk things through with your partner as part of a relationship counselling session.

MND Associations give direct services and support to people living with MND, their family and friends.

Calling the MND Info Line on 1800 777 175 (9am to 4.30pm Monday to Friday) will link you into the services they provide.

Carers associations are also available in every state and territory in Australia and can help carers with:

• counselling
• information and resources
• education and training
• carer support groups
• carer support and programs

Carers Australia or call 1800 422 737 for your states' carers organisation.

Carer Gateway (previously known as Commonwealth Respite and Carelink Centre) or call by phoning 1800 422 737 between 8am and 5pm. Each region in Australia has a Carer Gateway service provider. The Carer Gateway has staff that can talk through what support and services are available in the area you are calling from.

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. Palliative Care Australia 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 or a WhatsApp group might also be helpful. Find out more about Friends, Family & Relationships

The state MND Associations organise MND information 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.

Learn more about MND information sessions

The website CarerHelp provides resources and information for people caring for a loved one at end of life.

Grief is how we react to the loss after someone has died. Bereavement refers to time after the death of a person with whom we have had a relationship. 

Grief can be expressed very differently from person to person. For each person, grief and loss is personal and unique. Most people learn to cope with loss over time with the support of family, friends and their community.  For around six percent of people who lose someone, their grief is chronic and disabling.

After the death of your loved one, there may be a sense of abandonment. Over time, friends and family begin to get on with their own lives. People involved in caring for your loved one may stop coming to the house. This can add to feelings of abandonment and isolation. The change makes it even more important to ask for help if you need it.

When grief is extreme and disabling, a person’s ability to cope day to day is impacted. In cases of disabling grief, it is important to seek help. Signs that you may need to seek help include:

• appetite changes (loss of appetite or overeating)
• intense sadness
• difficulty sleeping
• feelings of emptiness and despair
• thoughts of harming yourself.

Be kind to yourself. You have been through a lot, and while it might feel difficult to ask for help, it is courageous. Talk confidentially with your GP, the palliative care service involved in caring for your loved one, or with a relative or friend that you trust. With support, you can begin to move forward, feel better and become more able to cope.

Your MND Advisor is available to talk with you during this time. They can give information about where to seek some more formal support such as counselling.