Help and Care
Caring for Someone

How will I Feel?

A carer often experiences a range of feelings about their role and responsibilities. It’s common to feel as if you are on an emotional rollercoaster. It may help to know your feelings may be similar to those experienced by the person with cancer.

Research shows that carers often experience higher levels of distress than the person with cancer.


Common reactions
Although everyone is different, these feelings are common to most carers at some point.
 
Fear
Caring for someone with cancer can be frightening. You may feel afraid of:
  • how unwell the person you’re caring for is feeling.
  • not knowing enough about the treatment and health professionals.
  • being responsible for giving medications.
  • feeling like everything is out of your control.
  • not knowing what the future holds.
  • the possibility that the person you’re caring for could die.
Many carers say that learning more about the cancer helps them feel more in control, while others feel overwhelmed by the information available. You need to do what feels best for you.
 
Anger and frustration
Carers can feel angry or frustrated for many reasons, including:
  • having to be the carer
  • the extra responsibilities
  • family and friends not doing more to help
  • having future plans interrupted
  • having little or no time for activities they used to enjoy
  • feeling the person they're caring for does not seem to appreciate the hard work and sacrifices being made
You may be able to learn strategies to deal with anger and frustration. 

Tips
  • Take some deep breaths, and try to understand why you're angry. There are many reasons why people feel angry. You may be tired and need a break.
  • Let the anger out – for example, go for a brisk walk around the block or talk about your feelings with a friend, relative or another carer.
  • Recognise the situations that make you angry, and try to avoid them, minimise them or react differently. Talking to someone may help. 
  • Notice the warning signs in your body – tense jaw, heart pounding, gritting teeth, shaking – and try to calm yourself down before your anger gets out of control. 
  • Try to direct your anger positively. Use it to motivate you to make changes for yourself or to find out more about cancer and its treatment.
  • Try relaxation or meditation.
  • Talk to your GP or a counsellor about how to manage your feelings.
Loneliness
It is easy to become isolated as a carer. You may feel too busy to socialise or contact friends and family. People may visit you less often because they think you have too much to do or they don't know how to deal with the disease of the person you're caring for.

Maybe you did a lot with the person who has cancer and you miss this special time together.

Even if you have many helpers you may feel alone and isolated. You may feel as though the main caring responsibility has fallen to you, and no-one quite understands what you're going through and how you feel.

Tips
  • Keep in contact with family and friends. You could email or create a blog to let others know what is going on.
  • Try to make contact with someone on a daily basis or ask a friend to ring you every few days.
  • Accept assistance from others and ask for support when you need it. Although it can be hard to ask for and accept help, it will lessen your workload and make caring more manageable. If you pretend you can manage on your own, people may not offer help.
  • Arrange for visitors to come to your house. Reassure others if they're frightened or upset by the signs of cancer, or if they don't know what to say.
  • Join a local carers or cancer support group (Call NCSM’s Resource & Wellness Centre for more information). Sharing your feelings with somebody in a similar position may make you feel less lonely.
Stress
The demands, difficulties and limitations of looking after someone with cancer can be stressful.

Symptoms of stress include physical signs, such as trouble sleeping, constant headaches, high blood pressure and other heart problems. Emotional signs may include feeling tired, unwell and overly sensitive.

If stress continues for a long time, it could lead to exhaustion and burnout. Many carers say they feel out of control or under extreme pressure all day, every day.

Tips
  • Recognise signs of stress, and find a way to deal with how you're feeling.
  • Exercise regularly, if you can, even if it's just a walk around the block.
  • Meditate or practise deep breathing.
  • Do something you find relaxing such as listening to music or reading.
  • Talk to someone.
  • Ask others for help.
  • Try to rest and get enough sleep.
  • Eat nourishing food to give you energy and keep you well. Ask your doctor if any vitamin or mineral supplements would be beneficial for you.
  • Take time to care for yourself. Respite care may give you the break you need.
Depression
The word depression is used to describe a range of emotions. Feeling down or sad is common and usually lasts a short time without severely affecting your life. However, depression is an emotional state that is more severe than feeling down or sad.

It may last a long time and can significantly affect your life. Depression is common among carers, and is not just a mood you can snap out of. Research shows that about one in four carers suffers from depression.

Some of the symptoms of depression include:
  • feeling sad or empty
  • losing interest and pleasure in activities you used to enjoy
  • loss of appetite or weight
  • having problems sleeping
  • feeling tired all the time
  • having trouble concentrating
  • feeling restless, agitated, worthless or guilty
  • feeling that life isn't worth living
There are many ways to deal with depression. What works for you may not work for someone else. Talk to your doctor about how you can cope. 

Tips
  • Try to do something you enjoy every day.
  • Get up as soon as you wake up rather than lying in bed.
  • Catch up with friends - either in person or on the phone.
  • Try to do some exercise; even a 30-minute walk every day can be beneficial.
  • Make an appointment with your GP. Discuss what you are experiencing. Your doctor might be able to refer you to a counsellor or talk about other options. You may want to ask if medication would help in your case.
Loss and grief
Many people associate loss and grief with dying. However, feelings of loss and grieving can also happen when someone receives a diagnosis of cancer.

As a carer, you may feel that you have lost an enjoyable part of your relationship with the person you are caring for. You may be missing parts of your life, such as work, regular exercise, social events or intimacy. You may be dealing with an uncertain future and financial changes.

It can take time to adjust to the changes and challenges you are facing. It may help to talk to friends and family about your feelings, or you can contact NCSM’s Resource & Wellness Centre at 03-2698 7300.
Guilt
Guilt is one of the most common emotions carers experience. Some carers have said they feel guilty about:
  • feeling angry and resentful.
  • wanting a break from caring.
  • being well, while the person they are caring for is sick.
  • not doing a perfect job as a carer.
Tips
  • Talk about how you feel with the person you care for, a friend or family member.
  • Keeping your feelings to yourself could add to the guilt you are already experiencing.
  • Consider talking to a counsellor. This may help you to communicate your feelings and change the way you are thinking.
  • Avoid using the words ‘should' or ‘must' – they can make you feel more guilt.
Satisfaction
Although it can be challenging at times, caring can also be very rewarding. One of the most fulfilling parts about caring for someone else may be your sense of satisfaction, achievement and personal growth.

Knowing that you are helping someone in their greatest time of need may make you feel good about yourself. Spending time with the person who is sick – even if it seems insignificant – can help build your relationship and create lasting memories.

You may not feel satisfied when you're caring for someone on a day-to-day basis. However, some people say that when their caring role ends, they are able to reflect on the positive and gratifying parts of their caring experience.

Some ways to cope
Keep a diary
Some carers use a diary to:
  • give them some perspective – for example, reading what you wrote yesterday may help you see that today is a better day
  • release some of their worries or frustrations and see them in a different light
  • acknowledge their feelings.
Don't expect to be perfect
Sometimes you may feel like you could have handled a situation better or done something differently. It's okay to make mistakes.

Each new day gives you a chance to try again. You may expect too much from yourself, and you may need to learn not to be so hard on yourself. No-one is perfect; you're doing the best you can.
Information reviewed by:
Jane Ussher, School of Psychology, University of Western Sydney, NSW; Piero Bassu, Consumer, NSW; Lindy Cohn, Cancer Information Consultant, Cancer Council NSW Helpline; Dr Mandy Goldman, Cancer Counsellor, Private Practice; Christine Harris, Consumer; Joanna Jarrald, Assistant Project Coordinator, Cancer Council NSW; and Colleen Sheen, Executive Manager, Policy, Strategy and Communication Unit, Carers NSW.