Many people are fortunate to have a personal carer to help look after them. Usually a carer is a spouse or an adult child, but often other relatives, friends or neighbours will take on a significant caring role. Carers do not have to live with the person whom they support, but they provide care on a regular basis. Carers are a crucial – but often overlooked – part of the health system.
You may be reading this because you are caring for someone with advanced cancer. Family and carers play a key role in palliative care and are considered part of the team.
As a carer, you can work with the palliative care team to ensure you understand, and are included in, decisions about the care and treatment of the person you care for. The person you are caring for needs to give written consent for the team to talk with you about their care. This consent and your contact details should be formally recorded in their case file.
The goal of palliative care is to improve quality of life not only for the person with cancer, but also for the family and carers. There are a range of support services to help you manage throughout the illness and in bereavement.
Our Caring for Someone with Cancer section provides information about the practical and emotional aspects of the caring role.
Caring can be a very difficult role and can challenge your own wellbeing. Respite care is available to give you a break. It can sometimes be given in your home, or the person you are caring for may be admitted to a respite care centre or, in some cases, a hospital or palliative care unit (hospice).
Respite care can be for a couple of hours, overnight or for several days. You can access respite care for any reason, such as looking after your own health, visiting friends or other family members, or catching up on some much needed sleep at home.
Some carers avoid using respite care because they feel guilty or concerned about leaving the person they are caring for. However, by taking a break, you will probably find that you can continue your caring role more effectively.
Your palliative care team may help you find respite care. You can also contact a Commonwealth Respite and Carelink Centre for information on local carer support services and respite options. It’s best to make contact early on so they are aware of your situation. You can call them on 1800 052 222 during business hours. For emergency respite support outside business hours, call 1800 059 059.
"It was very hard work, but I found that caring for my mother at home was one of the best things I could have done for her in her greatest time of need." - Janice
Carers often experience a range of conflicting emotions. Talking confidentially with a counsellor or social worker may help you work through your worries and concerns, learn communication strategies, and come to terms with changes in your life.
You and your family may be eligible for grief and bereavement counselling provided through the palliative care team. Palliative Care Australia has information on understanding grief that can be downloaded from palliativecare.org.au.
Cancer Council offers a national telephone support group for carers. It runs twice monthly. For more information about how you can speak to someone who has been in a carer role, call 13 11 20.
The National Carer Counselling Program provides short-term counselling. The Carers Associations in each state and territory also run local support groups. For more information, visit carersaustralia.com or call 1800 242 636.
Visit youngcarers.net.au or call 1800 242 636 for ageappropriate information. You can also call 1800 052 222 to find out about respite, practical help and social activities for carers under 25.
This organisation supports carers of people who wish to die at home. For more information, visit lifecircle.org.au.
"My husband, Brian, was diagnosed with a brain tumour when he was 41. He was operated on five days after the diagnosis, and some weeks later, began a course of radiation and chemotherapy.
"When the nurses suggested we call in the palliative care team, my first reaction was, 'But we don’t need palliation.' I feared what this meant. But they took the time to explain that it 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.
"Brian was able to enjoy the services offered while he was still well enough to appreciate it. He was able to join us at our daughter’s debutante ball. A nurse helped bathe and dress Brian and escorted him to the reception centre. She returned later to collect him, and stayed with him until I returned home. It will be a memory that will be forever with us. And the photos we have of that night, we treasure enormously.
"The nurses gave Brian love and dignity to the end. These ‘angels’ visited, medicated and reassured. Brian also enjoyed the massage therapy offered until his death.
"The social worker helped Brian and me talk about difficult and confronting issues, and she helped the children understand what was happening. The respite care was also a welcome relief and helped me remain strong.
"Palliative care gave us so much. The team gave Brian the care he needed. They gave the rest of us the strength to see it through. They became a part of our family – they were like angels who would appear, see things right and then leave us to be a family again."
Reviewed by: Dr Michelle Gold, Director of Palliative Care, Alfred Health, VIC; Patricia Chaplin, Consumer; Dr Jan Maree Davis, Area Director, Palliative Care Service, Calvary Healthcare Sydney and St George Hospital, Kogarah, and Conjoint Lecturer, University of New South Wales, NSW; Denise Green, Consumer; Palliative Care Australia; Paula Ryan, Nurse Unit Manager, Cancer & Specialist Palliative Care Service, Rockhampton Hospital, QLD; Pippa Sangster, Telephone Support Group Facilitator, Cancer Council NSW, NSW; Robyn Tucker, Cancer Nurse, Cancer Information and Support Service, Cancer Council Victoria, VIC; Trilby Witton-Oates, Social Worker, Rockhampton Hospital, QLD.