Providing care to a loved one in the final stages of their life is a profound and challenging time. Individuals who have taken on this responsibility often describe it as one of the most difficult yet significant experiences they have ever undertaken.
Whether you have been a caregiver for an extended period or have recently learned that your loved one has a life-limiting illness, the realisation that their condition will not improve is an emotionally charged moment. It is common for people to grapple with a wide range of emotions during this time, and there is no right or wrong way to feel about the prospect of dying. The dynamics of your relationships may evolve, and the caregiving role can intensify as you navigate the journey towards the end of life and eventually in grief and bereavement.
Even if you have been a caregiver for many years, the awareness of approaching end-of-life can bring about new anxieties and uncertainties. There are practical considerations to address and plans to make, but it is equally important to prioritise your own wellbeing during and after this challenging period.
As a carer and/or family member, you may need assistance to help you provide care in a way that also looks after your own health, wellbeing, and personal goals. This assistance can include:
- provision of information, education, and resources to support you in your caregiver role
- the availability of timely in-home support, which includes services and equipment
- access to and availability of planned and emergency respite care services
- identifying your emotional and physical health needs early and throughout the persons’ illness, and in bereavement
- addressing your needs for greater financial support, including access to the carer's allowance
- providing information and support to you if you are responsible for making decisions on behalf of the person, such as being their power of attorney, enduring guardian, or medical treatment decision maker
- guidance on who to go to if you are concerned about the person’s care
Palliative care is centred around the family, recognising the crucial role that family members and caregivers play in the care of their loved ones. It is essential to understand that palliative care is not solely focused on the final moments of life. Instead, it is a comprehensive approach that aims to help individuals with life-limiting or terminal illnesses, as well as those who are aging, to live their lives as fully and comfortably as possible. It provides practical and emotional support, encompassing the entirety of the caregiving journey.
Resources
The following websites have helpful practical information and support for carers of people at end of life, as well as links to useful organisations and websites.
Carers Australia is the national peak body representing Australia’s unpaid carers.
Carer Gateway is an Australian Government program providing free services and support for carers.
Carer Gateway – planning for the end of life
Useful tools for end-of-life planning.
Palliative Care Australia (PCA) is the national peak body for palliative care and has resources for patients and carers.https://palliativecare.org.au/im-a-carer/
CareSearch consolidates online palliative care knowledge for health professionals, people needing palliative care and their families, and for the general community.
NSW Health ACI (Agency for Clinical Innovation) End of Life and Palliative Care
A statewide portal for palliative and end of life care resources.
caring@home website aims to increase access to quality and timely end-of-life care for patients who choose to be cared for, and die at home, if possible.
caring@home provides a practical handbook for carers: Helping to manage breakthrough symptoms safely using subcutaneous medicine.
Violet is a national not-for-profit organisation, providing information and support to help everyone in Australia navigate the last stages of life and the grief and loss that accompanies it.
The ISLHD Carer Program helps our health service cater to the needs of carers by providing better access to information, services and support.
This is a checklist of who to notify if someone dies.
Carer Program
Coming in 2024
Looking after a family member or friend who has a life limiting illness may feel like something you ‘just do’ and you may not feel like you are a ‘carer.’
Recognising your role as a carer can help you access practical, financial and emotional support and other information you may need to help support you in your role. Although at times caring for people with a life limiting illness may have some challenges, it is also very rewarding.
The ISLHD Palliative Community Service recognises that the needs of carers are integral to the care provided to patients. We aim to work in partnership with carers to continuously provide the best quality of care for people with a life limiting illness.
In 2024, the ISLHD Community Palliative Care Service will be launching a Carer Program that aims to:
- identify if patients have a carer.
- explore if the carer understands what to expect with their role.
- use a Carer Support Needs Assessment Tool (CSNAT) with carers to identify any support needs they may have.
- provide practical or emotional support or information that can help carers in their caring role.
- continually work with carers to identify their individual and unique needs and ensure that carers and families are also well supported along with our patients.
We are always trying to make improvements in our service and can only achieve this through identifying any needs you and the person you are caring for have and to receive any feedback about your experiences.
If you want to know more about our Carer Program, please speak with one of the palliative care team or call 1300 068 458.
Palliative Care and Bereavement Volunteers
Palliative care volunteers make a difference in the lives of others. They are specially trained to offer emotional and social support for palliative patients in hospitals and in their homes.
Volunteers understand palliative care concerns and make a valuable contribution to the 'total care' of patients and their carers.
They complement clinical care by:
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offering companionship
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providing respite and support for carers
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reading, playing games, writing letters
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sharing their skills and interests
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assisting with activities
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providing basic practical support - not patient care
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and most importantly being a friendly ear!
They are bound by the same professional and ethical standards as staff, most importantly respecting and maintaining privacy and confidentiality.
Volunteer Grief Companions
Our trained volunteers provide non-judgmental, flexible and compassionate grief support.
A volunteer can
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Chat over a cup of tea; allowing the bereaved person to feel comfortable expressing their grief
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‘Walk and talk’
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Discuss current practical issues the person is facing and options for help
Our volunteers bring experience from all walks of life and have been trained in palliative care, listening skills and bereavement support. They are there to listen rather than direct.
Bereavement Navigators
** coming in 2024 **
After the death of a person, the tasks associated with arranging funerals, and dealing with lots of paperwork related to a person's estate can be challenging. Dealing with significant administration tasks and bureaucratic processes can feel like an additional burden at this time when you are grieving. Having to notify people and organisations can be painful and difficult.
Our Bereavement Navigators can help guide you through the many tasks and challenges that accompany the death of a person. They provide practical support to carers, families or friends, supporting you with what to do after a person dies.
ISLHD Bereavement Counselling Service
Bereavement Counselling Service
Grief is a normal and natural response to the death of someone significant in our lives. Every person grieves in their own way and there is no ‘right’ way to grieve.
Similarly, we all cope in different ways. Many people will simply turn to their existing relationships and coping strategies. For some people, it is helpful to seek specialised and non-judgemental support from a bereavement counsellor in a one-on-one protected space.
The ISLHD Bereavement Counselling Service is open to all adults within the Illawarra and Shoalhaven regions. We can also discuss the needs of any child or young person who may benefit from specialist support.
Our counselling service is free and confidential. We provide trauma-informed care, and we are sensitive and welcoming to all diversity.
We encourage enquiries from all potential clients and health professionals. A medical referral is not required.
We encourage you to get in touch with the Bereavement Coordinator/Counsellor if you would like to make an appointment or discuss the service further.