I’m a Carer
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.
The person 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 the 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 experiencing fatigue, resentment, social isolation and stress.
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,
- carer-sensitive workplace policies that support flexible working hours and leave arrangements for carers of people receiving palliative care or end-of-life care.
Children and teenagers caring for a person receiving palliative care may need additional support in accessing services for themselves and for those they are caring for. This includes school support to ensure their education needs are being met, enabling access to training and employment opportunities and participation in key social networks.
To find palliative care services in your area, 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 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.
How can I support my friend/family member? This page will help you with some ideas in what to say and do with a friend or family members who have a terminal condition.
Directory of Services – You can search the National Palliative Care Service Directory to find your nearest palliative or specialist palliative care provider or service.
Dying to Talk Discussion Starter – This resource will help you start the discussion with friends and family on how you want to be cared for at the end of your life.
Ten questions to ask about palliative care in residential aged care – We recommend you or your family ask the following questions to find out whether the aged care service can manage your changing needs in the final stage of your life.
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 the next person you care for at the end of their life will benefit.
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 whether medication is needed.
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.
Living Well with Metastatic Breast Cancer – If you have metastatic breast cancer, or you know someone who does and you would like information tailored to your particular circumstances, then please complete this short questionnaire.
Facts about morphine and other opioid medicines for pain in palliative care – Opioid medicines are pain relievers. Knowing the facts and unravelling a few myths, will help you and your carers understand opioid medicines and therefore manage your pain effectively so you can get on with living as well as possible with your life limiting illness.
Massage therapy in palliative care – This resource explains the benefits of massage therapy in palliative care.
The dying process – This leaflet asks the question what does dying look like? What are the changes that happen and what should you do?
Understanding grief – Everyone experiences grief in their own way. This resource provides information on the grieving process, how should you feel and for how long?
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.
Palliative Care in Aged Care – For most people entering a residential aged care facility it will be their last home, making palliative care and end-of-life care an integral part of planning their care needs. It is important that older people are supported to receive high quality end-of-life care and palliative care in the setting of their choice, whether that be in their own home, in residential aged care, in an acute care hospital or in a dedicated hospice service.
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 with 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: 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.
Myth Busting: Pain is an evitable part of dying Con shares how palliative care has helped control his pain.
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 now how she feels 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: 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.
Paediatric palliative care information for carers
There are different ways a family might receive a diagnosis or recognition of a life-limiting illness. Ideally, every family is informed of their child’s prognosis in a sensitive, respectful and honest manner.
There are three common ways a diagnosis process starts;
- A parental concern
- A health professional concern
- A critical event
This time can be devastating for families and people may experience many different emotions, including shock, fear, helplessness and denial. How a person responds to the diagnosis or recognition of an illness or condition will be unique to them. Emotional and practical support can come from different people at different times including health professionals, family and friends.
A Family Companion is a booklet that has been developed to summarise some of the situations and challenges that people may experience as a parent and carer of a child with a life-limiting condition or illness. Some of the complementary factsheets are listed below and all of the resources are available from the all resources page.
Acknowledgement: Together for Short Lives 2013, A Core Care Pathways for Children with Life-limiting and Life-threatening Conditions, 3rd edn, Together for Short Lives, Bristol.
General Information and Support for carers
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.
My Aged Care is where you can find out more about services and support to help people in their caring roles
Department of Human Services is where you will find out more about carer payment and carer allowance
My Health Record is where you can find information about My Health Record, an online summary of your key health information
Advance Care Planning Australia (ACPA) is a national program funded by the Australian Government Department of Health, enabling Australians to make the best choices for their life and health care.
Dementia Australia have a range of help sheets that can support carers and their loved ones that provide reliable information about dementia.
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 then 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
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
Disclaimer: PCA provides these links for information purpose only. It is not responsible for the content of these websites.
If you notice any of the links are broken, or would like to suggest additional information resources to be added, please contact us.