Caring - live panel discussion
Please watch our live panel discussion on caring, which includes topics such as power of attorney, help as a carer and living wills.
Being a carer
You may not consider yourself to be a 'carer' - what you are doing is just part of your relationship with the person you are looking after. However, if you give unpaid support to a member of your family or to a friend, who could not manage without your help, you are a carer.
What can carers do to look after themselves?
Being a carer is not easy - it can have a huge effect on you and your life. Caring for someone with a brain tumour can be both physically and emotionally demanding. Of course, each carer's experience is unique to their own circumstances, but it is often forgotten that you can only care for someone well, if you care for yourself.
Breaks in caring
This can mean anything from daily breaks of an hour or two, to respite holidays of one or more weeks, plus anything in between.
Many carers feel guilty if they take time out for themselves, but it is vital that you make time for yourself.
Make use of offers of support from family and friends. Do something you enjoy that helps you switch off and find yourself again for awhile. Make this part of your caring routine.
Your local council can also help, for both regular short breaks and less frequent longer breaks. Speak to them about whether your loved one could attend a day centre or if they can arrange for 'respite care'.
You may also have a local carer's centre that can offer help.
Practical support
Let people know what you need, no matter how small - friends are sometimes nervous about asking.
Our carers Facebook group offers a safe online space where you can meet others caring for a loved one with a brain tumour who understand what you're going through.
- Tell your employer - most employers will do what they can to be flexible and to help.
- Tell your GP - in order to look after you properly, they need to know your circumstances.
- Talk to your local social services - ask for a carer's assessment to work out what practical and financial support is available to you.
It's important that you do not sacrifice your own health.
Try to get enough sleep. Lack of sleep can affect your concentration and ability to make decisions. It can also make you feel depressed and increase your risk of some health conditions. Talk to your GP for advice or medication.
Make sure you eat well. This will give you more energy to provide the care.
Ask about the many aids and adaptations that are available (e.g. hoists, rails). Make sure you are trained in using them correctly.
Get trained in moving and handling a person and learn more about medications and their side-effects.
Some tumours can affect a person's ability to control their behaviour and emotions, leading to aggressive behaviour.
Learn to read the trigger signs and seek help from your healthcare team to manage these symptoms more safely.
Remember - it is the disease, not the person, that is doing this.
Carer's assessment
You are entitled by law to a carer's assessment by the local authority to assess your own needs. This includes any help that would maintain your own health and also balance caring with other aspects of your life.
Get everything in writing - this ensures less confusion and less is forgotten.
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Financial support
Find out about any financial assistance that is available to you. This is an important part of looking after yourself and relieving your stress.
Only use expert, trained advisors. We can direct you to this support via our benefits clinic.
Emotional health and support
Being a carer is not easy. It can be physically and emotionally demanding and may have been thrown on you with no time to adjust.
Although you may gain much personal satisfaction from being a carer, feelings of anxiety, stress, frustration, fear, anger, isolation and loneliness are also common.
It is important to acknowledge that these are very natural feelings and you are not alone in feeling this way.
Reach out to people you can talk honestly to and express these feelings. This could be a friend or relative, a counsellor, or someone else going through the same thing.
Be aware of depression
If you are feeling that everyday activities are a struggle, you have little motivation or are unable to feel enjoyment in things you used to, this could be depression. Talk to your GP if you feel this way.
Post-caring
You may feel quite lost when your caring role stops. Whatever your situation, it can be quite difficult and can take some time to adjust.
If you are grieving, you will have all the emotions this brings, plus the practical matters that need to be dealt with.
Our team can guide you to the support that you need in the place and time that you need it.
Carers - looking after yourself - Standard format - PDF
Find out more about Carers - looking after yourself, in the full fact sheet.
Carers - looking after yourself - Clear print - PDF
Find out more about Carers - looking after yourself - in the full fact sheet, Clear print version, designed to RNIB guidelines.
If you have further questions, need to clarify any of the information on this page, or want to find out more about research and clinical trials, please contact our team:
Support and Information Services
0808 800 0004 (free from landlines and mobiles)
support@thebraintumourcharity.org
Phone lines open Mon-Fri, 09:00-17:00
Research & Clinical Trials Information
clinicaltrials@thebraintumourcharity.org
You can also join our active online community on Facebook - find out more about our groups.