Caring for someone with a brain tumour

This information has been reviewed by:
Dr Kate Drummond, Neurosurgeon, Royal Melbourne Hospital

Caring for yourself

Coping with behavioural and personality changes

Tips for communication problems

Support services

Caring for yourself

Accepting the role of carer may be one of the first changes you face when a loved one is diagnosed with a brain tumour. Sometimes the demands of care-giving combined with the stress of everyday life can be overwhelming. In order for you to provide care and support for someone else, it is important that you ensure your own needs are met.

• Recognise signs of stress in yourself, earlier rather than later.
• Seek help and accept it from family, friends and neighbours or through a social worker who can tell you about practical and emotional supports available.
• Make time for yourself to do things that you enjoy
• Maintain your contact with others and try not to give up your hobbies and interests.
• Share your feelings with a supportive person such as a family member, close friend, health professional or members of a support group.
• Ask your doctor for information so you understand what is happening. If you don't understand what the doctor says, ask them to explain again. Having answers to your questions can help to reduce your stress.
• Look after your own health needs by making sure you eat a healthy balanced diet, exercise, sleep regularly and find time to relax. Don't put off your own medical appointments.

If possible, share the care of your loved one with trusted family members or friends to ensure you receive adequate rest.

Coping with behavioural and personality changes

Depending on where the tumour is in the brain, mood, behaviour and personality may be affected. Effects from the tumour may include confusion, short temper, forgetfulness, anxiety, depression, sadness and, rarely, aggression. The person may become more or less emotional than usual and may become quite withdrawn. The senses may also be affected - vision, taste and smell. As a support person or carer, the following strategies may be helpful to manage these changes. Discuss any changes with the doctor so that you are able to understand.

• Reduce demands made on the individual without taking away independence and control - too many demands or too much stimulation can add to confusion and frustration.
• Try to set achievable goals, limitations and boundaries.
• Individuals may show differing behaviour change during the course of treatment - with increasing awareness can come anger, frustration, anxiety, depressed mood, etc.
• Try not to take angry outbursts and words personally - try to remain calm.
• Gently remind the person of the changes / limitations that have occurred and the need for assistance.
• Be reassuring and encourage them about how well they are doing.
• Use written daily schedules to create routine.
• Keep family members informed of any changes, which will help reduce confusion, tension or potential embarrassment.
• Encourage physical activity as an outlet.
• Don't pretend to know what another person is feeling - ask them.
• If the person becomes agitated about something, try to redirect their attention to another topic.

Tips for communication problems

Difficulties talking, reading, writing, concentrating and remembering can vary greatly and may occur following a brain tumour. See a speech pathologist and/or occupational therapist at the hospital or community health centre to find out how these difficulties can be managed. The following are general tips that may be helpful:

• Talk in short, clear sentences.
• One idea or concept at a time helps. Fatigue, memory loss, etc. can make it difficult to consider several concepts at a time.
• Allow a reasonable amount of time for a response to occur during conversation - avoid rushing the person or finishing their sentences.
• Check to see if the person has understood you - rephrase or simplify your point if needed.
• Encourage communication, even if it is slow, and maintain eye contact.
• Acknowledge difficulties if the person is getting upset or frustrated. 

Support services

It is important to remember that you can only care for a person successfully if you also care for yourself. It can be helpful to identify and discuss your thoughts, feelings and needs with the person you are caring for and with others (e.g. family, friends, support group members or health professionals).

• Call the Cancer Council Helpline to speak to a nurse counsellor and find out about cancer support groups and services that may assist you - 13 11 20.
• Carers Victoria - 1800 242 636 - can provide useful information for carers.
• Brain Tumour Australia - http://www.bta.org.au/ - includes lots of helpful information about brain tumours.

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