Caring for someone with motor neurone disease (MND) can be a complex and emotional experience. However, there are ways to look after yourself while also caring for your loved one.
When a loved one is diagnosed with MND, you may feel many conflicting emotions. It may take some time to take in what is happening. Working through the emotions you and your loved one may be feeling can take a while.
Many people don’t see themselves as being a carer. They see themselves as wives, husbands, partners, friends, sons and daughters. Accepting your role as a carer can be a big transition.
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.
More information is available on the pages Types of help at home and Government support and 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:
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.
Caring for someone with MND while you are working can take extra effort. There are ways to manage both.
Staying in work can give you income, social connection, and a break from caring.
You can choose if you want to tell your employer about your caring role. If you do, it may help you get support like flexible hours, working from home, or extra leave.
Your employer must not treat you unfairly and should make reasonable adjustments (changes) to support your caring role. You may be able to take carer’s leave or compassionate leave.
Changes to your work may affect your pay, super, and other benefits. You may be able to get financial support, such as Carer Payment or Carer Allowance.
Looking after your wellbeing is also important. Support services, counselling, and carer networks can help.
Read the Employment and MND: a guide for carers to learn more about your rights, supports, and how to balance work and caring. This guide is one of a series that provides information about managing employment and MND. There is also a guide for people living with MND, and a guide for employers.
Acknowledgements
Information on this web page is based on evidence and information from:
Aspects of Care: for the Primary Health Care Team, MND Australia.
Evidence and recommendations were also drawn from MND NSW Carers Kit, Mayo Clinic, Health Direct, Carers Australia, Care Search, Relationships Australia, Healthy Living (SANE Australia), RACGP Aged Care Clinical Guide (RACGP), Five Steps to Mental Wellbeing (NHS Scotland), 10 Tips to Staying Mentally Healthy (Better Health Channel) and the VicHealth Guide to Healthy Living Apps (VicHealth).