MND is currently a life limiting illness. As it progresses, carers will find themselves in the position of supporting their loved one with MND at end of life. This can be the most rewarding yet challenging time that we face. As a carer we find ourselves supporting someone’s wishes while also managing our own grief. It is sometimes hard to know what to do…read on for some strategies that can assist you.
Create a calm environment
It is important to create a calm environment for the person that you are caring for. This may include showing them their favourite TV shows or movies, listening to e-books, or creating a list of music that may give them comfort and trigger some happy memories from across their lifetime.
Become familiar with the dying process
For some of us we want to know what to expect when someone is approaching the end of life, others may find this too confronting. Everyone’s experience and wishes will be different.
Palliative Care Australia has a brochure developed especially for carers which can give you some guidance about what to expect from the dying process. It covers what dying looks like, changes you may notice in the person and what you can do to help, how you will know that the death has occurred and what you should do. Click here for more details.
Self-care strategies
As a carer, it can be overwhelming in the final days of supporting a loved one as family and friends come together. It is essential that you still take time to prioritise your health and well-being. Take regular breaks for yourself so that you can rest and recover. Reach out to the Palliative Care team or their volunteers as they can provide you with support.
You may want to do something creative or physical, such as gardening, craft or going for a walk to provide you with an outlet without the need for words. You may want to write down your feelings by keeping a journal or do a short meditation. Read how mindfulness can assist you as a carer here
Continue to speak with others and let them know how you are managing. Your local palliative care service may also have a bereavement counsellor or support group available.
Practical tips from other carers who know what you are going through
You can find a range of tips from other carers from the My Aged Care website including supporting the person you care for, how to cope with your own emotions, working with health professionals, planning ahead, and available supports including counselling and grief support. These can apply to anyone who is facing end of life regardless of age. Read more here
MND Australia has an end-of-life guide which covers topics such as planning ahead, managing emotions and having difficult conversations, organising financial, legal and other personal affairs, choice and control at the end of life and advance care planning and decisions and what people living with MND have said about end of life. Click here to read.
CarerHelp Videos
There are a range of videos from health professionals that provide you with information about what it is like caring for someone at the end of their life and how to manage grief and loss. Click here to watch. There are also carers themselves who speak about their experience caring in the last few days, scroll down and click here to watch.
Carers Gateway
Carers Gateway also has some practical resources to help you during this journey.
Do you have your own strategies to share?
It is often good to hear from others who have the lived experience in end-of-life care. What has worked well for you and your loved ones? What have you learnt from your palliative care team?
Email us at
Join us at the next carer kitchen table, bring your strategies and share with others.
Join the MND NSW Carers Program
As a carer, you provide unpaid emotional, psychological or practical care and support to a family member or friend who is living with an illness or a disability.
Our Carer Program offers support for carers, including young carers.
If you are a carer and haven’t yet had a chance to join the MND NSW Carers Program, click here and Complete our Online Intake Form or call our Info line on 1800 777 175.
We will send you a Service Agreement to review and sign.
The MND NSW Carer Program is FREE to join for all carers supporting a person living with MND.
