Taking care of a child who has a brain tumour can have a huge impact on the relationship between you, your partner if you have one, and your other family members and caregivers. In some families, caregivers can include stepparents and blended family members. Even if your relationships are strong, it is normal for each caregiver to react differently.
Here are some suggestions:
- If you are in a relationship, find time to spend at least five minutes a day with your partner alone. Talk about the good experiences of the day as well as the bad.
- Don’t judge the other person’s emotions or behaviour. One caregiver may burst into tears every day, while another might not show any emotion. One caregiver might become knowledgeable about the tumour and active in managing the situation, but another might cope differently. It doesn’t mean that both caregivers don’t love the child just as much.
- Deal with your emotions by talking about them. Sometimes, caregivers direct anger at each other, either directly by lashing out or indirectly, by getting easily irritated. It can have an impact on the relationship. When caregivers are already stressed, it is difficult to deal with the additional stress in a relationship. Hiding anger is also unhealthy.
- Remember that it is OK to express your emotions in front of your children. It shows them that it is OK and healthy to display emotion. It also shows them that people can get relief from displaying emotion. However, do not put your children in the position of having to parent you through your emotions.
- Take care of yourself and manage your stress.
- Set up a communication tree where another family member is responsible for updating family and friends about your child's status. This will free up more of your time to spend caring for your child.
- Friends or family members may offer to help you with shopping or other chores. Accept those offers of assistance. Keep in mind though that they might not carry out a chore the same way you would. For example, they might not buy the brands you want or clean in the same way you do.
Caring for yourself
You may become so busy caring for your child and the rest of your family that you forget about yourself. At times this may be overwhelming. It’s important for you to take care of yourself to stay healthy. You can easily get ill because of the stress or lack of sleep. Remember that you can only help and support your child if you take care of yourself. Also, if you take care of yourself, you will be better able to deal with your emotions.
If you develop a medical illness, see your doctor and get treatment. If your condition gets worse, you’ll be less able to be there for your family.
If you experience any of the following feelings for more than a few weeks, it may be a sign that you need to take time to care for yourself or get help in managing parts of your routine.
- extreme sadness
- anger
- eating problems
- confusion
- anxiety
- physical pain
- feeling overwhelmed
- not sleeping
- feeling isolated
Here are some approaches that might help:
- Talk to others: Talking to someone you trust and rely on is one of the best ways to deal with your feelings. This can be a family member, friend, support group, or social worker or other professional.
- Stress relief: Try finding some regular time each week for yourself, to reduce your stress. Taking this time is not selfish. It is important for you to refresh yourself so that you can continue caring for your child effectively.
- You might have some favourite stress relief practices already. You may also wish to try one of the following:
- massage therapy
- walking, yoga, or other exercise
- prayer or meditation
- warm baths
- music
- humour
- watching movies or television
- Respite workers: There are services available in which a respite worker comes into your home occasionally, so that you can take a break.
- Support groups: A support group is a good place to express your feelings, frustrations, and worries, and to learn how others with similar problems managed them. There are support groups for parents, as well as for children and siblings. Meetings may be held in the hospital or community. If you are more comfortable speaking to someone one-on-one, you may be able to find someone through a local organization or through your child’s treatment team. There are also many support groups online, but beware that you don’t get caught up in other people’s anxieties.
- Physical health: Make sure that you see your dentist and family doctor when you should. Make sure you eat well, exercise, sleep regularly, and find time to relax. If you don’t, you become ill and unable to keep caring for your child.
- Counselling (family or individual): Sometimes the stress of a child’s illness is so huge, that it is helpful to speak to a social worker or psychologist. You may go by yourself, with your partner, or with your family. The counsellor can give you ideas on how to help your family adjust to the changes you are facing. It can provide a safe place for everyone to talk about how they are feeling. This can help make your life easier to handle.
Guided meditations for parents and children
Listening to a guided meditation can be a helpful way to cope with stress and focus on your thoughts. The following meditations can be used by children, teenagers and caregivers whenever you feel overwhelmed, stressed or need to bring yourself back into the present moment.