Being a carer

You may not consider yourself to be a ‘carer’. You might think that 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 classed as a carer and it’s important you’re looking after yourself too.

Being a carer is a selfless and difficult thing to do, and likely not something you ever expected or wished to be doing. So do remember to be kind to yourself and that you are worth a short break, a day away from it all or to share with a loved one.

Looking after yourself

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.

And it can be easy as a carer, often as a result of guilt, to forget that you deserve to be taken care of too. Even if it’s something as simple as just finding out more about the support available for carers.

While it’s important you’re in good health (mental and physical) so you can care for your loved one, it’s also important you remember to take care of yourself for you too.

Let others know you are a carer

In order to access support, you’ll need to let others know that you’re caring for someone.

People you could talk to

Family and friends

Once they know, they can provide support, emotionally and practically.

Other carers who have been through, or are going through, something similar

They may instinctively know how to help you or be able to help guide you through your journey.

Your GP

In order to better look out for your well-being, it’s vital your GP is aware you’re a carer. They will be able to take in to account your circumstances and may also be more flexible with appointment times if they know you’re a carer.

The Adult Services or Children’s Services (Social Services) departments of your local authority

They can give you a carer’s assessment to find out the practical and financial support available to you.

Your employer

They may be flexible around working hours and leave arrangements. You may also find it helpful to let colleagues you trust know that you’re a carer, so they can show their support.

Local carers’ centre

Local carers’ centres are a source of information and advice for practical and emotional issues.

Make a list of useful numbers

Making a list of useful numbers to contact, especially for out of hours, can make you feel more reassured that you know what to do should anything happen that causes you concern.

Take steps to retain or build yourself a support network

Let people know if you need help and what you need, no matter how small. Friends and family members are usually more than willing to help out but aren’t sure how to ask you if you need some support. If you aren’t completely comfortable starting these conversations, you could signpost information on how friends and family can support someone living with a brain tumour.

You may also want to join specific support groups for carers. This would empower you to share experiences, get advice from people who have been in your position and help you feel less isolated.

Take breaks in caring

Daily breaks

Looking after your own needs starts with ensuring you have daily breaks from caring of at least an hour or two. You should make this part of your caring routine and think of it as just as important as any other element of caring.

Many carers feel guilty if they take time out for themselves, but it is vital that you make time for yourself to do something you enjoy that helps you switch off and find yourself again for a while.

If your loved one’s care needs are such that they can’t be left alone, make use of offers of support from family and friends to stay with them for a couple of hours.

You could also ask your local council whether your loved one can attend a day centre. Alternatively you may have a local carers’ centre or other charity that offers this service or what is known as a “sitting service”. This is where a trained volunteer will keep your loved one company for a few hours, while you have a break.

Longer breaks

Sometimes you may feel you need a longer break – a day here and there, a few days break or a holiday of a week or two – or, over time, a combination of these.

This doesn’t necessarily mean going away yourself. It could be that the person you’re caring for goes on holiday and you stay home. This will give them new experiences, a change of scene and routine, and a chance to mix with other people, while you get a well-earned break too.

If you go away and need to arrange alternative care, then depending on how much care your loved one needs, friends or family may be able to take over. Your local council can also help, for both regular short breaks and less frequent longer breaks. Speak to their social services department and ask about ‘respite care’.

Acknowledge how you’re feeling

You’re probably going through a wealth of emotions while caring for your loved one – anxiety, anger, frustration, fear. On top of this, many people get trapped in a cycle of resentment and guilt.

Even though you love them and want to care for them, it’s normal to feel resentment towards the person you’re caring for. This can be for many reasons, including:

• Feeling that your life is no longer your own
• Not wanting your whole life to be about the illness
• Feeling like you aren’t appreciated for the care you provide
• Having to give up employment or education opportunities
• Losing your support networks and giving up social activities.

It’s common for carers to then feel guilty for feeling resentful or that they should be ‘doing more’ or ‘doing better’ at caring.

If you can, talk to the person you’re caring for about this – they may also welcome the opportunity to talk about their own feelings. If you aren’t able to talk to them, you might want to talk to friends or family about how you’re feeling. Your GP or healthcare team are other potential sources of support or you could contact our support team.

It doesn’t necessarily matter who you talk to, what’s important is not bottling up your emotions.

Look after your physical and mental health

It’s important that you do not sacrifice your own health while caring for someone. Make sure you eat well and stay hydrated. This can help prevent you from becoming ill and give you more energy to provide care.

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. If you’re sleeping less than you normally do, make sure you talk to your GP for advice or medication.

If you’re going to be helping someone move around, make sure you understand how to manage this without injuring yourself. Ask your GP about the many aids and adaptations that are available, for example hoists and rails, and ensure sure you are trained in using them correctly.

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. If you think you might be depressed, there are a variety of sources of support available to you and you should talk to your GP as soon as possible.

Make sure you and your family are safe

If your loved one has memory difficulties, this can sometimes cause problems relating to safety – for example, you may tell them not to touch the cooker, but they may forget that you told them that.

Placing reminder notes in an appropriate place can help ensure everybody stays safe.

If your loved one becomes violent

Some tumours can cause personality changes, affecting their ability to control their behaviour and emotions. Sometimes this can lead to aggressive behaviour.

It’s important to remember that it’s the disease, not the person, that is doing this.

However, your safety should be paramount and you should try not to feel guilty if you need professional help to manage the aggression.

Talk to your healthcare team if you have concerns about a loved one becoming violent and they will help you learn to read the trigger signs, manage the aggression more safely and signpost additional support that may be available.

When your caring role stops

Your caring role can stop for various reasons – it could be because your loved one has recovered and no longer needs care, or it could be because they can no longer be cared for at home, or because they have died.

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. Use your support network to help you and don’t be afraid to let them know what you need. You’ve spent a lot of time looking after someone else, now let people look after you.

Your GP is also an important source of support, particularly if your grief seems overwhelming. They can also put you in touch with a bereavement counsellor, if necessary.

Our team can guide you to the support that you need in the place and time that you need it.

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

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