How your role may change
As the disease progresses, the person’s needs will change and the demands on you as a carer are likely to increase. Some people live with advanced cancer for many years, so there may not be much difference in your caring role immediately. For others, the disease progresses quickly and your responsibilities may become more complex almost overnight.
The doctors may give a general indication of the person’s life expectancy. This is known as the prognosis and it is likely to sound a bit vague, such as months to many months, weeks to months, or days to weeks. The actual time could be shorter or longer, because each individual responds differently to care.
Not everyone wants to know their prognosis. If the person you are caring for prefers not to know, you may still want to get some indication to help you plan ahead. You can do so if the person gives their medical team permission to speak to you alone.
Avoiding carer burnout
Caring for someone with advanced cancer can be physically and emotionally demanding. Carers often put their own needs aside and focus all their energy on supporting the person with cancer. This can be hard to keep up over what may be months or years of caring.
Now more than ever, it is important to look after your own wellbeing (see the tips in Caring for yourself). Ask for and accept help and find ways to care for yourself. Even taking five minutes to do something you enjoy or to still your mind can mean you cope better.
Stress or distress that lasts a long time can lead to carer burnout. This can show in physical and emotional ways. If you are experiencing mood swings, irritability, sleep problems, changes in appetite, overwhelming fatigue or other signs of stress for more than two weeks, or if you are relying on alcohol or other drugs, talk to your GP or the social worker on the palliative care team.
Tina Chivende, Social Worker, Cancer Psychosocial Service, Canberra Region Cancer Centre, ACT; Gabrielle Asprey, Telephone Support Group Facilitator, Cancer Council NSW; Dr Ben Britton, Senior Clinical and Health Psychologist, Calvary Mater Newcastle and John Hunter Hospital, and Conjoint Lecturer, School of Medicine and Public Health, University of Newcastle, NSW; Valmai Goodwin, Psychologist, Cancer Counselling Service, Cancer Council QLD; Karen Hall, 13 11 20 Consultant, Cancer Council SA; Zoe Mitchell, Senior Social Worker, Palliative Care, Fiona Stanley Hospital, WA; Amber Rose, Consumer; Carolina Simpson, Policy and Development Officer, Carers NSW.
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