Coping with the changes
Sometimes all that is needed is time to adjust. At other times, there are various things you can say or do to help. It is normal for kids to think mostly of themselves. Even when you feel grotty, they may be more concerned with how it affects them, that your cancer is not fair for them, or about the next thing they want to do. This is frustrating, but totally normal. Often as children get older they recognize that it is difficult and unfair for you as well. They may feel upset or guilty about the moments that they have focused on themselves. Be as open about it as you can. This is a difficult time for everyone.
What makes cancer especially difficult are the many unknowns. Living with uncertainty is part of having cancer. There are some questions you will not be able to answer. Finding out as much as you can about your cancer may make things less scary.
Everyone in your home will be affected by your cancer, even if they don’t all express their thoughts. There may be changes in your appearance and there may be changes in what you are able to do. You will want to try to keep things as normal as possible. Be there as much as you can for the family’s/ whānau’s sake. Keep as many things as you can the same.
A daily routine is important. See that the necessary things get done. Another family/whānau member may have to take over some of the things you usually do. Ask for support from others if necessary, especially if you have side effects from treatment that is worrying your children. It is best, if possible, to have the same person helping, especially when there are children who need consistent care and support.
Children are often more able to accept body changes than adults. Give a brief explanation of why you look or feel the way you do, and let it go at that. If you are not upset, the chances are your child won’t be, and he or she will accept the changes easily. Curiosity may mean they ask some matter -of-fact questions about what they observe.
Your children may not want people to know things have changed in your home. Let them know you are willing to talk to their friends if they want you to, or to help them figure out/practise how they would like to tell their friends themselves. Talk about some of the questions they might ask and what the answers could be. It may be helpful to talk to your children’s teachers to let them know how things have changed for you.
Try to be relaxed if changes need to be made, and involve children as much as you can in new plans. Children respond differently and have different needs at different ages (see the section ‘Different ages and stages’).
If you and your children are having on-going problems, let your GP and the hospital know. Don’t hesitate to ask for professional counselling. It may be possible for the whole family/whānau to be counselled together. Try and find out if there are any cancer support groups in your area, as it can be very helpful to talk to someone in a similar situation. The Cancer Society has a service called Cancer Connect where you can be connected with someone who has had a similar experience. Call the Cancer Information Helpline for more information on 0800 CANCER (226 237). Ask your local Cancer Society if there are any books that may be helpful. Some recommended books are listed at the back of this booklet.
Discipline may be difficult because children can behave badly in order to get the attention they feel they are missing. But a breakdown in discipline can convince a child that something is very wrong at home. It is important to set consistent and familiar limits and find ways to enforce them – for your sake and for theirs. Communicate your understanding, love and acceptance of the children but not their misbehaviour. Reward good behaviour and let them know you especially appreciate co-operation now. Remember it wasn’t always perfect before. (For teenagers: let them know the usual rules apply, such as curfew, expectations about behaviour, rules about drugs, alcohol, unsafe sex …)
If you notice a consistent change in behaviour you may like to plan on spending some more one-on-one time with your child. Suggest that if it is hard to ask for your attention, they could use a sign or secret code that you have thought up together. They can, for example, put a magnet on the fridge next to a picture of the two of you when they need a hug.
If you never show how you feel or talk about your thoughts, the chances are they won’t either, but covering up strong emotions is like sitting on a time bomb. A child can become frightened of his/her own thoughts and feelings instead of accepting them as normal.
You will have many feelings about your diagnosis. Don’t be afraid to express them. If you are sad, cry. If the children are sad you can cry with them – it may help to ease the tensions. It is important to talk to them about how you think and feel and what you do to cope. Ask them to think of a time when they were angry or sad. What did they do to make themselves feel better? Would that work now? What else might you do?
Some children may:
- feel sorry for themselves when the person who cares for them is ill, and then feel guilty because they think they should feel sorry for the parent or caregiver.
- try to make up for those guilt feelings by being super good and setting impossibly high standards for themselves.
- cling to you too much – afraid something will happen if they are not there.
- withdraw from you, unconsciously trying to become more independent in case something else happens to you.
- resent the fact that they need to help you when the opposite was true before.
- laugh and behave badly to cover up their real feelings or their lack of understanding (especially in strange situations).
- pretend to be ill to get attention or because they want to be with a parent. They might make a big fuss about a minor illness.
- be afraid they’ll get cancer too, or that others they love might.
Let your children know that you understand and accept them. Talk to them about how they are thinking and feeling and if you notice changes in their normal behaviour. Remember that this may be their way of coping and that it is okay as long as it does not stop them participating in their usual activities, such as school. If you have concerns don’t be afraid to ask for support. There are many other families who will have struggled with the same issues.