MND Australia
MND Info Line 1800 777 175. 9am to 4.30pm Monday to Friday.

Caring for a loved one with MND

Caring for someone with motor neurone disease (MND) can be a complex and emotional experience – but there are ways that you can look after yourself, and your loved ones, when dealing with such a challenging situation.

At the time of diagnosis, both the person with MND and their family and friends may be feeling many conflicting emotions. Suddenly the world they knew and the future they had envisaged is different.

Time is needed to take in what is happening and to work through the many emotions you and your loved one may be feeling.  

Over time, as your loved one’s needs increase as a result of the progression of MND, so does the work load you carry. Being a carer, a voice, an advocate as well as a partner/daughter/son is an important role.

Becoming a carer can result in:

  • 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
  • doing practical things in everyday life differently – e.g. helping with mobility, meals and other needs

Many people don’t see themselves as being a carer – instead, they see themselves as wives, husbands, partners, friends, sons and daughters. Simply becoming known as a carer can be a big transition in itself.

Providing care is often a very steep learning curve as you learn about MND, clinics, equipment, service providers, My Aged Care, the NDIS and everything else that comes with progression of the disease.

 

As a carer, you may experience a range of emotions throughout the course of the disease. Remember: each person is unique and reacts emotionally in their own way. It is important to acknowledge that the overwhelming nature of caring for someone with MND can put the carer under great strain.

It is also important to understand:

  • it is normal to experience a confusing mixture of strong emotions
  • it is not always easy to talk about such powerful and personal emotions
  • you may need to think about ways you can share your feelings

Much research has been done to look at what it feels like providing care as the primary carer. It has been well established that caring has an adverse effect on a carer’s physical, social, emotional and financial wellbeing. Being a carer is a marathon of sorts, not a sprint, so it is important that you are well supported so that you can take care of your own health.

Some carers have strong skills, or past experience, in dealing with stress and related impacts from providing care. Others are at the start of their journey and still learning what works best for them.

There are many things you can do, however, to help maintain your mental health and wellbeing, ranging from finding ways to build in relaxation activities into your schedule and talking with health professionals, to getting help with basic things around the house and asking others to help

A good first step is becoming more informed. 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
  • contacting your MND association and health professionals from your MND clinic to learn about MND, the services available to you and the new skills you will require day to day
  • attending an MND association support group - call 1800 777 175 to find out more about groups in your area
Finding services in your community that can help

Services and support in your local community can be enormously beneficial for reducing stress and the physical burden of the caring role. Try and:

  • use external services providers and where possible hand over some of the more tiring physical day to day activities to others such as personal care assistants, cleaners and maintenance workers for help with showering, cleaning and lawn mowing
  • think about using respite care to allow you to do something you enjoy and to rest and relax. If you can accept and access respite earlier rather than later it provides a good chance for the respite provider and your loved one to get to know each other, whilst he or she is physically more able and when the impact of speech impairment may not be so great.
  • see your general practitioner (GP) for your own health - be proactive about looking after yourself by seeing a GP for regular check-ups and as soon as you have any concerns or notice changes with your health
  • For more information on accessing services in your community see Types of Care at Home, My Aged Care, NDIS and respite care webpages
  • Keep doing your best with the basics
  • Make sure you spend time doing the things you love and looking after the basics of daily life.
  • eat well and exercise regularly
  • explore relaxation activities that you can make part of your day, for example: meditation, yoga, breathing exercises and muscle relaxation techniques
  • don’t ignore tiredness – get some sleep when your body tells you to
  • avoid caffeine close to bed time
  • try warm baths before bed to help with sleep and relaxation
Apps for health and wellbeing

Many good quality smartphone apps, ones that are based on evidence of what helps reduce stress, are available for free or at low cost, including:

  • BeyondNow

  • ReachOut Breathe
  • Recharge
  • Pacifica
  • Smiling Mind

The VicHealth Guide to Healthy Living Apps is another great way to find an app that meets your needs.

Stay active

Physical movement and activities are a great way to relieve stress and manage difficult emotions. Make sure that you:

  • use relevant equipment for MND as soon as it is required to minimise the physical strain on you and your body
  • go for a walk, or sit quietly and reflect on your thoughts and feelings, if you have trouble expressing feelings verbally and need other ways to deal with emotions
Help is available anywhere, anytime

Sometimes, providing care can feel like it’s becoming too much. And often it is not easy to recognise depression from sadness.
If you are experiencing thoughts and feelings that are distressing and intense, there are great sources of confidential help for understanding what’s going on, and feeling more in control:

Stay connected

Research also finds that staying connected with others can play a big and positive role in reducing stress. If you can, try to keep participating in social, community or work activities that 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 maintain your employment whilst also supporting your loved one. Also talk with service providers and others involved in caring for your loved one to develop a schedule that will support your working day.

Finding ways to keep learning and developing new skills can help, too. Online courses or virtual exhibitions and tours that you and your loved one can enjoy together might be a useful way to learn new things at a time that suits you. There are many great online options, including:

Talk about how you feel with your loved one

Sometimes, you may feel that your loved one may be expecting too much from you. It is important to discuss how you feel and find ways to alleviate the pressure on you. If you’re talking with your partner about difficult things, try 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 is happening to both of you, what’s working and what’s not, and the impacts they have on you
  • when it feels okay, and respectfully, try to tell your loved one how you feel and think about what’s going on with MND, 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 tension

If you and your partner feel comfortable enough to approach a professional, you may also feel that it helps to talk things through with your partner as part of a relationship counselling session.

MND associations provide direct services and support to people living with MND, their family, friends and service providers in all states and territories across Australia.

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

Once you are enrolled with their service you will be assigned a MND advisor who can support you and your loved one by providing information, guidance and support. The knowledge and understanding of MND association staff is invaluable and valued by people across Australia.

Carers associations are also available in every state 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

Carers Gateway (previously known as Commonwealth Respite and Carelink Centre) 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 so if you were to get sick, have an accident or have to leave home suddenly. Having a plan in place means that if something goes wrong, the person you care for will still be looked after

Many different MND specific information events are held throughout the year in various locations around Australia. The events are organised by individual MND associations for people with MND, their family and friends. There is usually no charge to attend but it is important to register with the host association prior to the event.

Some events are presented 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.

Bereavement refers to time following the death of a person with whom we have had a relationship. Grief is how we react to the loss. Grief can be expressed very differently from person to person. For each person, grief and the bereavement experience is personal and unique. Most bereaved people, with the support of family, friends and their community, cope with this loss, however for around six percent of the bereaved their grief is chronic and disabling.

Following the death of your loved one, there may be a sense of abandonment, as friends and family begin to get on with their own lives. Many people involved in caring for the person with MND will no longer come to the house. The change makes it even more important to ask for help if you need it.

For those with extreme and disabling grief, it will impact their ability to cope day to day. 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 feelings of despair
  • thoughts of harming yourself

Be kind to yourself when going through bereavement. 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. There is support available to you which can help you move forward, feel better and more able to cope over time.

Your MND advisor is available to talk with you and they can provide information about where you can seek assistance if you wish to seek some more formal support such as bereavement counselling.