It can be a painful experience to be the parent of someone with advanced cancer. Most parents feel it goes against nature to outlive their children. Your parents are likely to feel overwhelmed with sorrow and helplessness at first. It may take them a while to adjust. Information about your condition may help your parents or your grown-up children cope with their own feelings.
You may find your friends are invaluable, especially if your family is not nearby or helpful. Sometimes an advanced cancer diagnosis occurs when your family relationships are shaky. Even if some of your friends can’t deal with your diagnosis, there will be others you can lean on for emotional and practical support.
Some friends can listen to whatever you say – complaints, hopes, fears, wishes – without judging you and without that extra involvement that a partner or relative may feel is necessary.
Children need explanations that they can understand. If you’ve explained cancer and its treatment before, it might be easier to start the discussion. However, you might find it harder to talk about the cancer advancing and being difficult to cure.
Even if they are young, your children will probably suspect that something is wrong. They may notice changes at home, such as your distress or an increase in visitors.
Assure children that the disease is no-one’s fault. Children may think they, or their behaviour, caused the cancer. They might also fear the same thing happening to them or someone else they know. Children will want to know in advance when you will be staying in hospital or needing rest at home. They will want to be reassured that there will always be someone to care for them.
If you are a sole parent, finding someone to look after your children may be harder. It may help to talk to a social worker about what’s available in your local area.
Teenagers react in different ways, ranging from withdrawal to offers of help and assurances of love. Like younger children, teenagers can feel abandoned as the family focuses on the sick person. Instead of focusing on themselves, teenagers are now confronted with the needs of the family. Because of these pressures, there may be outbursts over trivial things. They may also react to feelings that they are not really aware of, or cannot acknowledge, like anger, guilt or grief.
As with younger children, teenagers need to keep as much of their normal routine as possible – school, homework, outings and holiday activities. This may be difficult to manage when you’re feeling unwell and is particularly hard if you are a single parent. If you’re living with a partner, they may need to keep working as well as caring for you. This can leave little energy for children’s needs.
Adult children may struggle when they find out you have advanced cancer. They can become aware of their own desire to have a parent around forever. They may feel guilty because they can’t meet the different demands on them as parents, children and employees.
You might feel you have to, or want to, carry on as the head of the family, reassuring everyone that things are the same as always. Having to rely on your adult children more and more may make you feel guilty.
What to say to family and friends
- Listen and be alert to their feelings, this gives you an idea of what they can handle.
- Communicate feelings as well as facts.
- Give simple, honest answers, and clarify any confusion.
- Explain what will happen next and give children realistic hope – e.g. that the family can still enjoy time together.
- Don’t make promises you may be unable to keep.
- Try to keep family routines as normal as possible.
- Give children extra reassurance. They may become clingy or withdrawn – both are natural reactions.
- Give people who offer to help out with the children a specific task that benefits your child, such as taking them to sport or helping out with homework.
- Encourage them to talk about their feelings, but understand they may find it easier to confide in friends, teachers or other trusted people.
- Organise a break from home, e.g. a sleepover at a friend’s or a regular night out with peers.
- Provide resources for learning more about cancer and getting support, such as the websites www.myparentscancer.com.au and www.nowwhat.org.au.
- Consider involving your adult children in decision-making about treatment or activities you want to continue. They may have valuable input.
- Talk about ways your children might be able to help you, while still being able to manage the other priorities in their life.
- Provide information about your condition to your grown-up children to help them cope with their feelings.
- Organise or make time to spend with your children so you can create meaningful memories together.
- Give parents time to grieve and express their emotions.
- Explain current treatments. This may lessen any fears from their past experiences with cancer.
- Provide information about your condition to help your parents cope with their own feelings.
- Ask friends to help – they’ll probably be glad to do something for you.
- Connect with others – try online forums when it’s hard to leave the house, if you live far away from friends or family, or if you aren’t able to join a cancer support group. Visit www.cancerconnections.com.au
When you don’t want to talk about it
You may not want to talk about your fears and concerns with family and friends. This may be because you think you don’t have the words to describe how you feel, or you fear breaking down if you speak. You may also want to avoid being a burden to others or fear appearing as if you are not coping or you may just be a very private person.
Tips for opening up to others
- Let others help – Try and allow others to provide support, as this can help you adjust to your situation and cope better with your own emotions.
- Talk about your concerns – Talk about your fears and concerns with others, even if you break down at first, it often becomes easier with time.Join a support group, talk to a health professional or call Cancer Council 13 11 20
- Express your feelings creatively – Explore your feelings by writing in a journal or making something creative like an artwork or a song. This can help you to release your emotions if you find it difficult to talk to others.
If an illness is prolonged or very debilitating, some people think about euthanasia. This is when somebody’s life is deliberately ended to relieve them of their suffering from an incurable condition or illness.
Euthanasia is illegal in every state and territory in Australia. Nevertheless, it is something that many people consider when they are seriously ill.
Discuss your feelings and concerns with your doctor, family, friends, a counsellor or social worker. Sometimes these feelings are the result of depression or feelings of hopelessness, guilt or loneliness. These feelings can be helped with counselling and/or medical treatment.
Sometimes a person with cancer may decide that they want their death hastened, but later they decide that they don’t. They may have thought that way because they were feeling particularly ill, scared, or worried about the strain they were putting on others.
If you urgently need somebody to talk to because you are thinking about ending your life, call Lifeline on 13 11 14 for free, confidential telephone counselling at any time of the day or night.