Being a carer
Being a carer is rarely something people have planned to do. Taking care of someone with a terminal illness has been described as one of the toughest, but possibly most rewarding challenges of life.
I have the deepest admiration for carers, for I now know what they have to cope with, in many cases for much longer periods of time than I had to. Few people ask to be carers, in the sense in which you use the word. But being a carer is one of the greatest gifts we can give to those we love – even though we wish it were a gift we never had to give.
No two caring situations are the same and carers come from a diversity of lifestyles and circumstances. There are no rules about who can become a carer or about what a carer is expected to do. For these reasons, caring for someone can be confusing, exhausting and frightening at times.
People with a terminal illness will have a range of needs that go beyond meeting their physical or medical requirements. They are offered holistic care which focuses on quality of life and aims to help people live well. A team of health care professionals including doctors, nurses, allied health workers, chaplains and volunteers, provides specialised, coordinated care addressing the physical, emotional, social, cultural and spiritual needs of not just the ill person, but of their family and carers. This type of care can last for weeks, months or even years.
This approach aims to make the patient feel in control of their treatment and their quality of life. It involves family and friends, recognising that they, too, need to be prepared for the life threatening illness of someone they love, as well as being there to offer help and support during the grieving process.
This kind of care, known as palliative care, provides a range of services to patients and their families, including: nursing, medical care (including consultation with the patient’s GP), day care, counselling, diet advice, loan of equipment, physiotherapy, occupational therapy, social workers, bereavement support, pastoral care and a wide range of support from trained workers. Palliative care does not mean that the ill person has to stop active treatment for their illness and it does not only apply to the final stages of your life. Palliative care focuses on “quality of life” for the ill person and their family and carers.
My first reaction was “but we don’t need palliative care”. I feared what this meant. But the nurses took the time to explain what palliative care could mean. I felt more comfortable when I realised that palliative care was much more than just nursing a dying person – it was about holistic support and understanding, ensuring that Brian could still “live” as best he could in the time he had left. The services offered by palliative care other than nursing are also very valuable to the whole family, not just the patient. Palliative care is something not to be feared but embraced, if the need arises. I know my family would not have coped nearly as well physically and emotionally without the team. The palliative care team taught us not to be afraid and helped us find strengths we never knew existed.
As a carer, it is okay to think about your many different needs. Click here (PDF 80Kb) for a page you may like to use to write these down. This may help you communicate your needs to the care team, your family and friends.
Click here (PDF 1.3Mb) for some stories from carers about their experiences.
Terminology can be confusing. This website has used the following terminology:
- terminal illness - an illness which is progressive and has no cure
- life threatening illness - an illness which is very serious - a person may recover, or the illness may become terminal.
Sometimes, in other forums, the terms "life limiting" or "life shortening" are used instead of "terminal".
This website was developed by PCA with funding from the Australian Government Department of Health and Ageing. PCA is the peak national body representing the interests of people living with a life threatening illness. PCA aims to increase access to services for people living with a life threatening illness and their families and carers. To provide feedback on this website, click here.