Caring for someone with advanced cancer
You may be reading this because you are caring for someone with advanced cancer. What this means for you will vary depending on the situation. Being a carer can bring a sense of satisfaction, but it can also be challenging and stressful.
For more on this, see Caring for someone with cancer.
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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.
You will need the written consent of the person you are caring for before the team can talk with you about their care when they are not present. This consent and your contact details should be formally recorded in the individual’s case file.
The goal of palliative care is to improve quality of life not only for the person with cancer, but also for their family and carers. The palliative care team will assess your needs and identify services that can support you in your caring role. It is important that you know who to contact for help and support in an emergency or after hours.
Carers can sometimes feel they are at risk of losing their identity as partner, child, sibling or friend to their caring role. Accepting help from the palliative care team can mean you can spend more quality time with the person you’re caring for.
Information for carers
Caring can be a very difficult role that can challenge your own physical and emotional 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, residential aged care facility 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 use 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, it is important to look after your own health – by taking a break, you will probably find that you can continue your caring role more effectively.
It’s a good idea to start looking into respite services before you actually need them. Talk to your doctor or the palliative care team about what services are available and how you can access them. Commonwealth Respite and Carelink Centres can also provide information on local carer support services, respite options and other support that may suit your needs. Call 1800 052 222 during business hours or call 1800 059 059 for emergency respite support outside business hours.
You may have to pay part or all of the cost of respite care. The fees will depend on the care provider, whether it is subsidised by the government, how long the care is for, and the type of care required.
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.
If the person you are caring for is nearing the end of life, the palliative care team will provide the support you need to help you understand what is happening and what happens next. This may include discussions about feelings of loss and grief, now and in the future.
It is not unusual for carers to experience depression and/or anxiety. If you feel you are getting depressed or overly anxious, talk to your GP or another health professional. For more information about practical and financial support see Seeking support.
Grief counselling and information – You and your family may be eligible for grief and bereavement counselling provided through the palliative care team. For more on this, see Understanding grief or visit palliativecare.org.au.
Cancer Council telephone support group – Cancer Council offers a national telephone support group for carers. It runs twice a month. For more information about how you can speak with other people in a carer role, call 13 11 20.
Carers Australia programs – 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.au or call 1800 242 636.
Young Carers – Find age-appropriate information for young carers at Young Carers Network, or call 1800 242 636. You can also call your nearest Commonwealth Respite and Carelink Centre on 1800 052 222 to find out about respite services for carers under 25.
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.
Prof Katherine Clark, Clinical Director, Palliative Care, Northern Sydney Local Health District Cancer & Palliative Care Network, and Conjoint Professor, Northern Clinical School, University of Sydney, NSW; Richard Austin, Social Worker, Specialist Palliative Care Service, TAS; Sondra Davoren, Manager, Treatment and Supportive Care, McCabe Centre for Law and Cancer, VIC; A/Prof Brian Le, Director of Palliative Care, Victorian Comprehensive Cancer Centre – The Royal Melbourne Hospital and Peter MacCallum Cancer Centre, VIC; Cathy McDonnell, Clinical Nurse Consultant, Concord Centre for Palliative Care, Concord Hospital, NSW; Natalie Munro, Team Leader, PalAssist, QLD; Penelope Murphy, 13 11 20 Consultant, Cancer Council NSW; Kate Reed, Nurse Practitioner Clinical Advisor, Palliative Care Australia; Merrilyn Sim, Consumer. We also thank the health professionals, consumers and editorial teams who have worked on previous editions of this title. We particularly acknowledge the input of Palliative Care Australia and their permission to quote from €œBrian’s Story €_x009d_ in A Journey Lived – a collection of personal stories from carers (2005) on page 41. This booklet is funded through the generosity of the people of Australia.
View the Cancer Council NSW editorial policy.
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