Help & Care
Caring for Someone

Advanced Cancer, Death and Grief

The person you are caring for may have been told that they have advanced cancer – cancer that won't go away and is unlikely to be cured. You may both be trying to come to terms with this and experiencing a range of strong emotions such as fear, sadness and grief.

Caring for someone with advanced cancer can be frightening. Some people can live with advanced cancer for many years. You may find that you try not to think about this very much and focus on the everyday practical matters.

As the illness progresses, the person's needs may change and a different type of care may be needed. You may have to reassess the type of care you can offer and who else can help. It may be necessary for the person with advanced cancer to be admitted to hospital or another type of care facility. Some carers feel guilty doing this 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 caring duties.
The aim of palliative care is to enhance the quality of life of people with cancer and help them maintain their independence for as long as possible. It also supports carers in their role.

Palliative care is tailored to an individual's case and involves the coordination of services to meet their medical, emotional, spiritual and social needs. 

This information is intended to be helpful but it may stir up difficult feelings. Read it if you need to, when you feel ready:
A GP or public health nurse can coordinate palliative care but if the needs of the person with cancer change, they will be referred to a specialist palliative care team.
A person with advanced cancer may wish to discuss their thoughts about dying with you. This may be more common if you are their partner or family member. Although it can be difficult to discuss, death is an important issue. Getting advice from a counsellor, social worker or pastoral care worker may help you with the discussion.

The place of death may be important to the person with cancer. 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.

One of you may have strong views, making the decision easier. If the person with cancer is not clear what they'd like, it may be good to discuss it now to avoid any regrets or feelings of guilt later.

Dying at home
Some people say that they want to die at home. The palliative care team can discuss whether this is possible for the person you are caring for. You may also contact hospices that helps people with a terminal illness die at home. 
Many carers experience anticipatory grief. This is the grief you feel when you are expecting a loss such as death. Anticipatory grief feels similar to grief after a loss.

You may experience depression and extreme concern for the person. Some people start preparing for the death and beginning to think about what life is going to be like without the person with cancer.

Anticipatory grief can give family and friends time to slowly get used to the death, and to say what they want to say or tell the person what they have meant in your life. For example, some people write a page about what the person with cancer has meant to them and read it aloud to them.
This type of grief may not always occur, and it can be different to the grief a carer experiences when the person dies. The grief experienced before a death does not make the grief after the death last a shorter amount of time.
If the person you have been caring for dies, you may feel a range of emotions, including:
  • Sadness.
  • Numbness and shock, even if you thought you were prepared.
  • Relief that you are free of your caring responsibilities and can now make plans for your own future, or that the person is no longer in pain.
  • Anger towards the doctors or the hospital, your God or the deceased person for dying.
  • Guilt that you are thinking of yourself at this time.
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.
Grief is different for everyone. Reactions vary, but may include:
  • Physical symptoms such as breathlessness, loss of appetite, crying and sleep problems.
  • Confusion, trouble concentrating or hallucinations.
  • A sense of disbelief.
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. 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. Try to be kind to yourself.
Find someone to talk to 
This may be a family member, friend, professional counsellor or bereavement support group. If you're feeling very anxious, have trouble looking after yourself or think about hurting yourself, get professional help from a doctor, counsellor or a psychologist immediately.

Take time to reflect on your feelings 
Find a way to express your feelings, e.g. cry or write a diary. If you didn't tell the person who passed away all the things you wanted to say, it might help to write them a letter expressing how you feel.

When you can, talk about the person you have lost
Acknowledge how they have contributed to your life.

Remember their life in a way that is meaningful to you  
E.g. plant a memorial tree or put together a special photo album.

Give yourself time 
Some days you will just exist until better days come along. 

Don't make big decisions too soon 
If you make decisions in a hurry you may find, later on, that you regret them. For instance, you might want to wait until your grief lessens before moving from the house you shared.

Avoid using cigarettes, alcohol or drugs
Dealing with your grief this way may help delay or numb the grief for a while but can cause health problems.

Look after yourself 
It is common for a bereaved person to not eat well and to sleep poorly. Having set mealtimes and establishing a regular bedtime may help.
 
When you feel the time is right, explore a new interest 
You may feel guilty doing this, but it's okay to rebuild your life.

Carers often say that gradually they are able to cope and enjoy life in a new way again.
Coping with grief is an ongoing process. The feelings of loss don't go away but the intensity eases. Most people will continue to grieve in subtle ways for the rest of their lives. You may find little incidents, memories or anniversaries like birthdays or the day the person died bring back an intense sense of loss. It may help for you 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.

Experts say most people grieve for 6-12 months before they are able to carry on without thinking of their loss most of the time. However, if your sadness is ongoing and affects your day-to-day life, you may be clinically depressed. Talk to your GP about your feelings.
Acknowledgements
We thank the reviewers of this booklet: Jane Ussher, School of Psychology, University of Western Sydney, NSW; Piero Bassu, Consumer, NSW; Lindy Cohn, Cancer Information Consultant, Cancer Council NSW Helpline; Dr Mandy Goldman, Cancer Counsellor, Private Practice; Christine Harris, Consumer; Joanna Jarrald, Assistant Project Coordinator, Cancer Council NSW; and Colleen Sheen, Executive Manager, Policy, Strategy and Communication Unit, Carers NSW.