Talking about the future when you are living with MND can be hard. MND is a progressive, life-limiting disease. This means that thinking about what is ahead will include talking about care at end of life. However, the earlier you can start to think and talk about end of life, the better.
Learning about what is involved can make conversations with family and friends easier. Planning ahead can also help you feel less worried about what lies ahead. It can help you feel more in control and reduce stress.
You can feel safer knowing there are plans, care and support in place as MND progresses. Planning ahead for end of life helps you and your family.
When you make your wishes known, you can make sure your needs are met and your wishes respected.
Below you will find information about what you can do to plan ahead, and how it helps. You will also find an introduction on:
We hope the information helps you to start to think and talk about end of life care. You will also be able to find other useful resources and tools. You may like to read the resources and information here with your carer, family or others close to you.
Read as little or as much as you feel able to. You can stop at any time and return when you feel ready.
You can also speak with your MND Association Advisor or Support Coordinator and/or your MND clinic or palliative care team. They will know how hard it is to talk about challenging topics. They can talk about any questions or concerns you may have.
Planning ahead involves thinking or talking about end of life with family and friends. It can be hard, but this is completely natural.
You may feel concerned about what lies ahead. You may wonder about how decisions about your health care, lifestyle and finances will be made.
Talking about your future wishes helps bring some peace of mind to you and your loved ones. It also makes it more likely that you will get the care you want. It can also help maintain quality of life so you can get on with living in the time you have.
The main things we suggest you start thinking and talking with loved ones about are:
Needs may change over time. Having regular discussions will make sure your quality of life is supported. Planning ahead does not have to lock you in to your decisions. You can change your mind at any time.
See our Planning Ahead fact sheet for more.
Planning ahead involves thinking and talking about death and dying. Many people find these kinds of conversations uncomfortable or upsetting. Trusted information can help support you to deal with what lies ahead. Having the right information can help make sure your wishes are known and respected.
MND Australia’s guide to End of Life Care for people living with MND provides sensitive and practical information. The guide can help you have discussions with carers and loved ones. It also gives information on how to access support services.
If you feel ready, read through the guide with the support of your carer, family, MND Advisor or a member of your healthcare team.
Part 1: What do I need to know?
Part 2: Things I’m likely to experience
Part 3: What my family, friends and others close to me need to know
Part 4: What else might I need to consider?
Part 5: How do I get more help?
The guide helps you to learn about end-of-life care and how to talk with others about it. You can dip in and out of to find information when needed and when you feel ready. In the guide, you can learn about:
The guide also has a list of services and support from MND Associations, and other providers.
You can also talk about any aspect of the guide with your MND Association Advisor or Support Coordinator, or members of your healthcare team.
Early referral to your local palliative care team helps to build a relationship with them. It also makes planning for your needs easier as MND progresses. Palliative care staff will also be able to work alongside your existing healthcare team or MND Clinic to support a palliative approach to your care.
Sometimes, you may feel isolated, but there are people available to listen to you and support you.
The network of MND Clinics and MND Associations across Australia are a great source of trustworthy information, advice and support. MND Associations can also help you find other sources of support in your area, including financial, home care, funeral arrangements, managing stress, translation, help for families and bereavement. You’re likely to be referred to people and services who have an understanding of what living with MND is like.
Calling the MND Info Line or contacting your MND association Advisor or Support Coordinator is always a good place to start, and can provide you with sensitive advice and guidance on how to best address your needs.