I am a Carer
I am a Carer
National Palliative Care Service Directory
Finding out someone you know is going to die comes as a shock. Their world has suddenly changed. Anxiety, sadness and even anger at the news are all common reactions.
Many people, though, choose to see themselves as living with a disease or condition, rather than dying from it.
If the person is accessing palliative care, they will be receiving care that aims to help them live as well as possible and to stay in control.
The extent and quality of support provided to a carer and the person nearing the end of life is key to the experience they both have. Caring for someone who is dying is an individual commitment and can be a rich, rewarding and challenging experience. There is often a heavy emotional strain associated with caregiving at the end of life, with carers potentially experiencing fatigue, resentment, social isolation and stress.
Carers
Carers need support to assist them in providing care in a manner that also promotes their health, wellbeing and personal aspirations. These include:
- improved access to timely in-home support (including services, equipment, information, education and resources)
- expanded access to planned and emergency respite care services to support carers
- early identification of carers’ emotional and physical health needs, including during bereavement
- addressing carers’ needs for greater financial support, including prompt access to the carers allowance
- information and support if they are the person’s substitute decision-maker (attorney, enduring guardian or medical treatment decision maker)
- carer-sensitive workplace policies that support flexible working hours and leave arrangements for carers of people receiving palliative care or end-of-life care.
If you need assistance in finding out about, or accessing these support services, you can talk to your own health professional or the palliative care team that is looking after the person you are caring for. To find palliative care services in your area, click here.
For more information about paediatric palliative care, click here.
For more information about the National Register of Palliative Care Consumers and Carers, click here.
For more information about helping someone close to you living with a life-limiting illness, click on the links below. These pages are also available to download.
Palliative Caring
In 2020 Palliative Care Australia worked with the state and territory peaks to develop a new Carer Booklet resource, Palliative Caring.
The original booklet, developed by Palliative Care Western Australia, was adapted in each state and territory to ensure that everyone in the role of carer for someone receiving palliative care in Australia had access to critical information as relevant to their state and territory services, contacts, and legislation.
Palliative Caring helps by explaining what is involved, to better equip carers to make informed decisions. It doesn’t give detailed medical advice but presents options to consider and references a range of services and supports that might be helpful.
These resources are available at the following links:
- Australian Capital Territory
- New South Wales
- Northern Territory – new website coming soon
- Queensland
- South Australia – please contact for a copy via this link
- Tasmania
- Victoria
Palliative Care Fact Sheets
What is palliative care? – Palliative care is for anyone of any age, who has been told that they have a serious illness that cannot be cured. These brochures talk about what palliative care is, who it is for and how to source it.
Directory of Services – You can search the National Palliative Care Service Directory to find palliative care services in locations around Australia.
Discussion Starters – These resources will help you start a discussion with friends and family on how you want to be cared for at the end of your life.
Dementia and palliative care discussion paper – This discussion paper provides guidance for health professionals on palliative and end-of-life care for people with dementia and those who support them.
How can I support my friend/family member? – This page will help you with some ideas about what to say and do with a friend or family members who have a terminal condition.
Learn more about pain and pain management – Effective pain management is an important part of palliative care. This resource talks about how to help control your pain, opiate side effects and feel confident in working out whether medication is needed.
Massage therapy in palliative care – This resource explains the benefits of massage therapy in palliative care.
Palliative Care Online Training – The training program has been developed to help aged and community care workers, carers, volunteers, family members and health professionals who provide palliative care to aged persons in the community. The modules will help you develop your skills and confidence so that you feel better able to care for the person at the end of their life.
Ten questions to ask about palliative care in residential aged care – These questions will be helpful in determining whether an aged care service can manage the palliative care needs of a person with a life-limiting illness.
The dying process – This leaflet asks the question of what does dying look like? What are the changes that happen and what should you expect?
Tips for Managing Grief During the Holiday Season – The holiday season can be a particularly difficult time for managing grief. This page suggests some tips, services and books to help you deal with grief.
Understanding grief – Everyone experiences grief in their own way. This resource provides information on the grieving process and provides some guidance about what might support you.
Palliative Care Video Resources
Dying to Talk: Starting the conversation with Jean Kittson Jean Kittson’s advice on how to start an awkward conversation and the importance of talking about your end-of-life wishes.
Dying to Talk: Connie Johnson Palliative Care Australia approached Connie Johnson co-founder of the Love Your Sister campaign. Connie was diagnosed with terminal breast cancer in 2010 and received palliative care alongside curative treatment until her death in September 2017.
Busting Palliative Care Myths Palliative Care Australia busts common palliative care myths by following the stories of people receiving palliative care. Filmed with support from Collier Charitable Fund and the Westpac Foundation.
Myth Busting: Being referred to palliative care means my doctor has given up on me A palliative care patient shares how she first felt when being referred to palliative care, and how she feels now after receiving palliative care.
Myth Busting: Palliative Care hastens death Many people think palliative care hastens death. Phillip shares how palliative care has helped him spend extra time with his family.
Myth Busting: Pain is an inevitable part of dying Con shares how palliative care has helped control his pain.
Myth Busting: Palliative Care is just for people with cancer Many people think palliative care is only available to people with cancer. Diane shares how palliative care has helped her with her quality of life after being in hospital with problems with her lungs.
Myth Busting: Palliative care is only available in your last few days of life Giuseppe shares how palliative care has helped him over the past year to manage his pain and improve his quality of life.
Myth Busting: You can only receive palliative care in hospital Richard shares how he’s leaving the in-patient palliative care facility to spend his final days at home with his family.
General Information and Support for carers
Advance Care Planning Australia (ACPA) is a national program funded by the Australian Government Department of Health, supporting carers in their role as a substitute decision-maker. Free information and support is available via the National advance care planning support service 1300 208 582.
Carers Australia is the national peak body representing Australia’s unpaid carers, advocating on their behalf to influence policies and services at a national level. It works collaboratively with partners and its member organisations, the Network of state and territory Carers Associations, to deliver a range of essential national carer services.
Carer Gateway is a national online and phone service that provides practical information and resources to support carers. The interactive service finder helps carers connect to local support services.
CarerHelp is managed by the Centre for Palliative care. It provides the following benefits for carers:
- Access to high-quality information and resources that support them in the carer role
- Knowledge of the services available to carers
- An understanding of what to expect when someone is dying
- A greater sense of control over their role
- Better communication with the health care team, family and friends
- Great well-being
Dementia Australia has a range of help sheets that can support carers and their loved ones that provide reliable information about dementia.
My Aged Care is where you can find out more about services and support to help people in their caring roles.
My Health Record is where you can find information about My Health Record, an online summary of your key health information.
Services Australia is where you will find out more about carer payment and carer allowance.
Young Carers Network is a website for young carers to share their stories and opinions, attend live webinars and learn new skills.
Emotional support
Lifeline – A national charity providing all Australians experiencing a personal crisis with access to 24-hour crisis support. More information is available from their website or you can call them on 13 11 14
QLife – QLife is Australia’s first nationally-oriented counselling and referral service for Lesbian, Gay, Bisexual, Transgender and Intersex (LGBTI) people. More information is available from their website or you can call them on 1800 184 527
