Common reactions of carers

It’s common for carers to experience a range of feelings about their role and responsibilities. Many feel as if they are on an emotional roller-coaster, and have many questions. Often these feelings are similar to those experienced by the person with cancer. This information outlines the common emotions experienced, and outlines strategies to manage these feelings.

Although everyone is different, the following feelings are common to most carers at some point.

Worry

Caring for someone with cancer can be frightening. You may feel worried about:

  • the health of the person you’re caring for
  • not knowing enough about the treatment and the health professionals involved in their care
  • being responsible for giving medications
  • having so many things out of your control
  • not knowing what the future holds
  • the possibility that the person you’re caring for will 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 comfortable for you.

Anger and frustration

You may feel angry or frustrated for many reasons, including:

  • having to be the carer
  • managing the extra responsibilities
  • believing that family and friends could do more to help
  • having future plans disrupted
  • having little or no time for activities you used to enjoy
  • trying to juggle caring with family responsibilities and/or paid work
  • feeling the person you’re caring for does not seem to appreciate the hard work and the sacrifices you’re making.

Ways to cope with anger and frustration

  • Notice the warning signs – tensing jaw, pounding heart, gritting teeth, shaking – and use strategies to calm yourself down.
  • Take some deep breaths, and think about what has triggered your anger.
  • Let the anger out – for example, go for a brisk walk or talk about your frustrations with a friend, relative or another carer.
  • Recognise the situations that make you angry and learn to respond differently. It may help to acknowledge that under the circumstances these feelings are normal.
  • Use your anger to motivate you to change what you can about the situation or to find out more about cancer and its treatment.
  • Try relaxation or meditation. Call Cancer Council 13 11 20 for copies of CDs with guided exercises.
  • Take a break – have a massage or do something you enjoy.
  • Talk to your GP or a counsellor about your feelings. They may be able to offer both emotional and practical ways to help you manage.

Stress

The demands, difficulties and limitations of looking after someone with cancer are often stressful. Symptoms of stress include physical signs, such as trouble sleeping, headaches, high blood pressure, changes in appetite and heart palpitations. Emotional signs may include feeling tired, unwell, overly sensitive or physically and emotionally drained.

It’s common for carers to say they feel continually out of control or under extreme pressure. If stress is ongoing, it could lead to exhaustion and burnout.

Ways to cope with stress

  • Look out for signs of stress, and find ways to deal with how you are feeling.
  • Learn to meditate or practise breathing or stretching exercises such as yoga or tai chi.
  • Do something you find relaxing such as listening to music, reading, or taking a bath.
  • Talk to someone about how you’re feeling.
  • Accept offers of help from others or suggest tasks others can do. This will help reduce your workload. If you appear to manage on your own, people may assume you’re okay.
  • Try to rest and get enough sleep. You need energy to look after someone.
  • 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.

Loneliness

It is easy to become isolated or feel lonely as a carer. You may feel too busy or guilty 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 what to say. Some people are uncomfortable being around someone who is ill. 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 can still feel alone and isolated. You may feel as though the main caring responsibility has fallen to you, and no-one quite understands what you are going through and how you feel.

Ways to cope with loneliness

  • Use technology, i.e. email, Facebook or a blog, to stay in touch with family and friends.
  • Try to make contact with someone – either in person or by phone – on a daily basis, or ask a friend to ring you every few days.
  • Arrange for people to visit you at home. Reassure them it’s natural to feel uncomfortable  or upset by illness, and it’s okay if they don’t know what to say.
  • Join a local carers or cancer support group. Sharing your feelings with someone in a similar situation may help you feel less isolated.

Satisfaction

While caring can be challenging at times, many carers say it can also be a rewarding experience. Providing support for someone can bring a sense of satisfaction, achievement and personal growth.

Knowing that you are supporting someone during a time of need can help you feel good about yourself. Being there for them and helping even in small ways can strengthen your relationship and create lasting memories.

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

Depression

The word depression is used to describe a range of emotional states, from feeling low to not being able to get out of bed. Feeling down or sad is common in difficult situations and usually lasts a short time without severely affecting your life. However, clinical depression is different from feeling down or sad and is more than a mood you can snap out of.

Research shows that depression is common among carers. About one in four female carers and one in five male carers experience clinical depression2. Some of the symptoms of clinical depression include:

  • feeling sad or empty
  • losing interest and pleasure in activities you used to enjoy
  • experiencing a change in appetite or weight
  • having problems sleeping
  • feeling tired all the time
  • having trouble concentrating
  • feeling restless, agitated, worthless or guilty
  • relying on alcohol and sedatives
  • feeling that life isn’t worth living.

Ways to cope with depression

  • Plan time 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 daily 30-minute walk may be beneficial.
  • Make an appointment with your GP to talk about what you are experiencing. Your doctor might refer you to a counsellor or talk about other options, such as medication.
  • Visit beyondblue.org. au for more information about depression and anxiety.

Guilt

Guilt is one of the most common emotions that 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 being able to make the person better, even though this is unrealistic
  • saying or doing the wrong thing at the wrong time
  • having to care for someone they do not really like
  • not doing a perfect job as a carer.

Ways to cope with guilt

  • 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 guilty.

Loss and grief

Many people associate loss and grief with dying. However, feelings of loss and grief can also happen when someone receives a diagnosis of cancer.

As a carer, you may feel that your relationship with the person you are caring for has changed. You may also miss activities you used to enjoy, such as work, regular exercise or socialising. Changes in roles and taking on new responsibilities can cause stress between you and the person you’re caring for. You may have lost the future you thought you would have and/or be dealing with 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 Cancer Council 13 11 20.

This information was last reviewed in December 2014

This information has been reviewed by: Maxine Rosenfield, Counsellor, Private Practice, NSW; Joan Bartlett, Consumer; Julie Butterfield, Consumer; Julie Hill, Telephone Support Group Coordinator, Cancer Council NSW; Anna Lovitt, Senior Social Worker – Oncology, W.P. Holman Clinic, TAS; Carolina Simpson, Policy and Development Officer, Carers NSW; and Helen Tayler, Social Worker/Counsellor, Cancer Counselling Service, Belconnen Community Health Centre, ACT.

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