Understanding Palliative CareDownload this book (pdf, 376.62 kb)
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.
Accessing 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 their case history to remain confidential, explain that it will be easier for you both if you are involved in any communication relating to their health care.
Respite care is available to give you a break from your caring role. Respite 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, the service is there because caring can be a very difficult role and can challenge your own sense of well-being. 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 other organisations that provide respite services if you know you will need some assistance in advance.
It's best to make contact with the Commonwealth Carer Respite Centre early on, even if you don't have any immediate plans to access respite care. This will help the adviser to be aware of your situation when you do need respite, either planned or in a crisis.
You are eligible to access up to 63 days of residential respite care every calendar year. If you're receiving a Carer Allowance or Payment from Centrelink, you will continue to be paid for the days the person you are looking after is in residential care. Phone 1800 052 222 to discuss your situation. For urgent respite outside business hours, phone 1800 059 059.
Jackie's mother Diana had advanced lung cancer and the family wanted her to be cared for at home. As her mother's primary carer, Jackie was supported by the local palliative care team.
A nurse coordinated Diana's discharge from hospital and organised for Jackie to hire a hospital bed and purchase other equipment, such as bed pans, for her mother. A physiotherapist from the hospital taught Jackie how to use the bed and equipment, and showed her ways to lift and move her mother safely. A palliative specialist prescribed medication and made sure Jackie knew how to administer it to Diana.
As Diana needed round-the-clock nursing care, Jackie paid for agency nurses to attend on a 24-hour roster. The palliative care team visited every day and were available on the phone whenever Jackie had questions. After Diana died, surrounded by relatives and in familiar surroundings, Jackie received bereavement counselling through the hospital to help her come to terms with her mother's illness and death.
Carers often experience a range of conflicting emotions. If the person you are caring for is your partner, you may also be confronted with issues relating to sexuality and intimacy. Talking confidentially with a counsellor or social worker about these feelings may help you cope better, 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. Talk to the coordinating nurse or social worker for information.
- The National Carer Counselling Program (NCCP) - provides short-term counselling for carers. This is available through Carers NSW, an association for relatives and friends who are carers. It provides fact sheets, support kits and telephone assistance to help carers access resources, find solutions to problems, and talk about their experiences. Carers NSW also runs support groups and has an online discussion board for carers under 25. Visit the website www.carersnsw.asn.au or phone 1800 242 636.
- The Young Carer Program - helps people under 25 who have taken on a significant caring role. Administered through the Commonwealth Carer Respite and Carelink Centres, it offers respite, help with school work and practical issues, and social activities. Call 1800 052 222.
- LifeCircle - supports carers of people who wish to die at home and provides ongoing support to carers by phone, online or through outreach programs. For enquiries, phone 1800 132 229 or see www.lifecircle.org.au.