Palliative care information for carers

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.

Caring can be a rewarding experience, but it can also be very draining and isolating, especially if you are caring for someone full-time. It is vital that as a carer you remember to take care of yourself too. Organising palliative care services for the person you are supporting is an important step in helping both of you. By accepting assistance, you will be able to share your workload, which will help you to cope better with the demands of caring.

If you are a primary carer, it is also important to participate in discussions with the palliative care team and the person you are caring for, as any decisions made will affect you too. If the person you are caring for wants these discussions to remain confidential, you can explain that it will be easier for you both if you are involved in communication relating to their health care.

Respite care

Respite care is available to give you a break from your caring role. It can be given in your home, or the person you are looking after may be admitted to a respite care centre or, in some cases, a hospital or hospice.

Respite care can be for a couple of hours, overnight or for blocks of days. You can access respite care for any reason. For example, you may need time out to access health care for yourself; you may want to visit friends or other family members; or you just might want to catch up on some much needed sleep at home.

Some carers don’t access the service because they feel guilty or concerned about leaving the person they are caring for. However, respite care is there because caring can be a very difficult role and can challenge your own sense of wellbeing. By allowing yourself a break, you will probably find that you can continue your caring role more effectively when respite care has finished.

The Department of Health and Ageing’s Commonwealth Carer Respite Centre can provide emergency respite, as well as referring you to organisations that provide pre-planned respite services. It’s best to make contact early on so they are aware of your situation, even if you don’t have any immediate plans to access care.

You are eligible to access up to 63 days of residential respite care every calendar year. If you’re receiving a Carer Allowance or Carer Payment from the Department of Human Services (Centrelink), you will continue to be paid when the person you are looking after is in residential care. Phone 1800 052 222 to discuss your situation.

Counselling and mentoring

Carers often experience a range of conflicting emotions. Talking confidentially with a counsellor or social worker about your feelings may help you cope better, learn communication strategies, and come to terms with changes in your life. You and your family may also be eligible for grief and bereavement counselling provided through the palliative care team.

Cancer Council telephone support group – Cancer Council offers a national telephone support group for carers. It runs twice monthly. For more information, call the Helpline on 13 11 20.

National Carer Counselling Program – This Carers Australia program provides short-term counselling. Carers Australia also runs support groups and has an online discussion forum for carers aged under 25. Visit www.carersaustralia.com or call 1800 242 636.

Young Carers Respite and Information Services Program – Administered through the Commonwealth Carer Respite and Carelink Centres, this program offers respite, practical help and social activities to carers under 25. Call 1800 052 222.

LifeCircle – Supports carers of people who wish to die at home. For enquiries, call 1300 364 673 or visit www.lifecircle.org.au.

This information was last reviewed in May 2013

This information has been reviewed by: Cynthia Parr, Staff Specialist, Palliative Medicine, Royal North Shore and Greenwich Hospitals, NSW; A/Prof Richard Chye, Director, Palliative Care, Sacred Heart Health Service, NSW; Fiona Harris, Social Worker, Department of Palliative Care, Calvary Mater Hospital, NSW; Julie Hill, Telephone Support Group Coordinator, Cancer Council NSW; Claire Maskell, National Communications Manager, Palliative Care Australia; Janet Phillips, Helpline Manager, Cancer Council VIC; and Prof. Patsy Yates, President, Palliative Care Australia and Acting Executive Director, Institute of Health and Biomedical Information, Queensland University of Technology.

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