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Realising that the person you are caring for is likely to die from an illness or disease that cannot be cured is a very difficult part of the caring journey. You may have been helping them for some time to manage their disease, but realise that it is progressing and death is now foreseeable. Or you may have found out through a diagnosis or specialist visit that their condition is terminal.
This awareness can create new fears and uncertainties. There are things to think about and plan for. It is also important that you take care of yourself.
The resources in this pathway can help you understand what is involved and organise practical supports.
Mark Boughey talks about what is advanced disease and what is prognosis
The resources available below are relevant to this pathway. Most will have a PDF version you can print or save to your device. If you need help now, call the numbers listed under ‘Need help now?’.
Call 000 for emergency services and urgent assistance. If you need to talk, call Lifeline on 13 11 14. Call Carer Gateway Contact Centre for support and services (1800 422 737 Mon to Fri, 8am to 5pm).
This pathway outlines resources and tools that can be used when you become aware that death is a possibility. (pdf, 449kb)
Download pathway 2
Carers with experience in caring for someone at the end of life have put together this list of tips (pdf, 209kb) for other carers.
This resource (pdf, 577kb) provides a list of questions that you can use when you meet with your doctor or health care team.
Having a contact list (pdf, 605kb) means all the details are together when you need them. You can also put together your emergency contacts. It can be handy to keep this on the fridge.
Taking care of yourself is important if you are going to be able to care. Read the tips and make a plan (pdf, 105kb).
Read our practical tips (pdf, 324kb) on staying healthy. Eating well, exercise and seeing friends are all important.
You have an important role in managing communications with the health care team, family and friends. This resource (pdf, 545kb) gives you some tips for communicating with different people so that everyone understands what’s happening.
This resource gives you suggestions for helplines to contact (pdf, 550kb) if you need information about practical matters, help with a concern about a specific disease or urgent emotional support.
It is important to speak to the person you are caring for about their wishes for end of life. This process is called advance care planning, which is explained in this factsheet from Advance Care Planning Australia.
CarerHelp also has a factsheet for carers about having The Important Conversations (pdf, 939kb).
Accessing palliative care early can be beneficial for the person who is sick and their carer. Find out more about palliative care – its more than you think. (pdf, 503kb).
This module covers:
Answering a quick set of questions can help you identify what you feel most concerned about and can point you to helpful resources.