Sometimes all that is needed is time to adjust. At other times, there are various things that you can say or do to help.
Dealing with uncertainty
The uncertainty of what may happen is what will make your illness especially difficult to cope with. Living with uncertainty is part of having a serious illness and it can be hard to accept that. There are some questions you will not be able to answer. It can be helpful to tell your children that things are uncertain and acknowledge how difficult it can be to cope with that.
Find out all you can about your illness and its treatment, to make the unknown more familiar. You can also find out about symptoms of your illness, or possible side effects of the treatment. You can get this information by speaking to your specialist nurse or GP.
Everyone in your home is likely to be affected by your illness, even if they don't all show their feelings. There may be changes in how you look and there may be changes in what you're able to do.
You will want to try to keep things as normal as possible. Be there as much as you can for your own and your family's sake. Keep as many things the same as you can. A daily routine is important. Make sure that the necessary things get done.
Another family member may have to take over some of the things you usually do. Children will learn that this is part of what it means to be a family. Get outside help if necessary, especially if you have side effects from repeated treatment that make it difficult to cope with a home and family.
It is also best, if possible, to have the same person helping, especially when there are young children who need consistent care. The Scottish Family Information Service can give you advice on finding childcare and social workers as well as information on local childcare facilities and help with finding funding for childcare, if necessary.
Who can help?
If you find that problems continue, let your GP and the hospital know. Don't hesitate to ask for professional counselling. This can help people to recognise, understand and deal with their emotions and feelings. Your GP can give you advice on how to contact other professionals who may be able to help or you can contact the British Association for Counselling and Psychotherapy.
It may be possible for the whole family to be counselled together. It is helpful to tell your child’s school about your situation so that the staff there can support your child.
You may find it useful to join a support group in your area, as it can be comforting to talk to someone in a similar situation. Ask your local library if there are any videos or books that may be helpful.
You may look different due to the illness or treatment: for example, you may put on or lose weight. Children are often more able to accept body changes than adults; however, it can help to let them know it's OK for them to talk to you about it. You may also feel tired and may not be able to do as much as you usually manage. You can give a brief explanation of why you look or feel the way you do, and leave it at that.
You may find yourself a subject of gossip among the local children. This may be your chance to help them to understand something about your illness, if you feel able to. On the other hand your children may not want to admit that anything has changed in your home. Let them know you are willing to talk to their friends if they would like you to, and if you feel that you would be able to. It is also helpful if you let your children know that it is OK for them to talk to their friends, other adults or health professionals about these changes and how they feel.
Dealing with change
Be as flexible as you can – sometimes changes make it necessary to declare a ‘state of emergency’ when everyone in the family has to adjust their plans at short notice. Try to be relaxed if changes must be made, although sometimes you may feel overwhelmed by many changes happening at once. Try to involve children as much as you can in the new plans. Children respond differently to situations according to their own nature and personality and have different needs at different ages.
Support for children
If children seem to need additional help and support, you could ask your hospital or GP about child psychologists or other help that may be available locally. Very young children may benefit from seeing a play therapist. Your GP, hospital specialist, hospice or social worker can arrange these services for you.
Maintaining discipline during times of stress and illness may be difficult because children can behave badly in order to get the attention they feel they are missing. A breakdown in discipline can send signals to a child that something is very wrong at home and so it is important to set consistent and familiar limits and find ways to enforce them.
Let your children know you understand, love and accept them, but not their misbehaviour. Reward good behaviour and let them know that you especially appreciate cooperation now.