The person you are caring for may have been told that they have advanced cancer. This means the cancer won’t go away and is unlikely to be cured. Caring for someone with advanced cancer can feel overwhelming at first. You may both be trying to come to terms with the diagnosis and experiencing a range of strong emotions such as fear, sadness and grief.
Some people can live with advanced cancer for many years, and their needs will change as the disease progresses.
The demands on you as a carer might increase. You may have to reassess the type of care you can offer and think about who else can help. The person with advanced cancer may need to be admitted to hospital or another type of care facility. Some carers feel guilty when this happens, but handing over the everyday care to somebody else will allow you to spend more time just being together. If you wish, you can assist the staff with physical duties.
The aim of palliative care is to enhance quality of life and help people with cancer maintain their independence for as long as possible. It also supports carers in their role.
Palliative care is tailored to each person’s circumstances and involves the coordination of services to meet their medical, emotional, spiritual and social needs. A GP or community health nurse can coordinate palliative care at home, but if the person’s needs change, they may be referred to a specialist palliative care team.
A person with advanced cancer may wish to discuss their thoughts about dying. This is more likely if you are their partner or close family member. Although discussing death and dying can be difficult, they are important issues. Getting advice from a counsellor, social worker or pastoral care worker may help you prepare for these discussions.
Where a person dies can be important. Some people prefer to be in a hospital or hospice. Others wish to die at home in familiar surroundings and in the company of their family. Talking about these options early while the person is still well can help avoid distress and regrets or feelings of guilt later.
Cancer Council has produced several booklets to help you cope when cancer has advanced. Call 13 11 20 and ask for free copies or see of Living with Advanced Cancer, Understanding Palliative Care and Facing End of Life.
Some carers experience anticipatory grief. This is the grief you feel when you are expecting the death of someone close to you.
You may feel sad, down and depressed or become anxious and concerned for your family member or friend. Or you may find yourself preparing for the death and beginning to think about what life might be like once they are gone.
A long illness can give family and friends time to slowly get used to the person dying, to say what they want to say or to share memories. One idea is to write about what the person has meant to you and then read it aloud to them.
Having time to grieve doesn’t necessarily make the loss of the person easier to cope with once they have died.
"I would find myself rehearsing the eulogy in the shower, and then feel guilty. Talking to others at my support group helped me to realise my thinking was normal." — Carer
There is no right way to cope with the loss of the person with cancer. You need to grieve in a way that feels natural to you, particularly if you have religious or cultural customs that influence how you grieve.
You may feel a range of emotions, including:
All these reactions are common. Feeling relief or guilt is not a sign that you didn’t care. These emotions may come and go and change in intensity over time.
There are many services available to help with the practical and legal aspects of the death. For more information, contact Cancer Council 13 11 20.
Grief is different for everyone. Reactions vary, but may include:
There is no right or wrong way to cope with a loss. You may have religious or cultural customs that influence how you grieve.
Some people are critical of themselves for not coping as well as they think they should or for not reacting in the way others may expect them to grieve. Coping with grief is an ongoing process and your response may not be what you expected. The feelings of loss don’t go away, but the intensity generally eases with time.
Most people will continue to grieve in subtle ways for the rest of their lives. You may find that little incidents, memories or anniversaries (like birthdays or the day the person died) bring back an intense sense of loss. It may help to arrange to be with family or friends at these difficult times. Support groups or counselling can also help you get through times when your grief seems overwhelming.
Everyone grieves differently and takes different amounts of time to learn to live with the loss of a loved one. However, if your sadness is ongoing and affects your ability to function day to day, talk to your GP about your feelings.
For more information, see the Cancer Council’s booklet Understanding Grief, available free by calling 13 11 20.
"I feel I am now coping well with the loss of my husband. It is coming up to four years and I will always miss im; however, my life now has to be lived without him. I keep myself busy and I am doing okay." — Fiona
Reviewed by: Maxine Rosenfield, Counsellor, Private Practice, NSW; Joan Bartlett, Consumer; Julie Butterfield, Consumer; Julie Hill, Telephone Support Group Coordinator, Cancer Council NSW; Anna Lovitt, Senior Social Worker – Oncology, W.P. Holman Clinic, TAS; Carolina Simpson, Policy and Development Officer, Carers NSW; and Helen Tayler, Social Worker/Counsellor, Cancer Counselling Service, Belconnen Community Health Centre, ACT. We would also like to thank the health professionals and consumers who have worked on previous editions of this title.