It's common for carers to experience a range of feelings about their new role and responsibilities, and many describe it as an emotional roller-coaster. Often these feelings are similar to those experienced by the person with cancer – some studies show that carers can have even higher levels of distress.
Many carers find it reassuring to know that their feelings are a normal reaction to the demands of the role. This section describes some of the common emotions experienced by carers. It's important to give yourself permission to take care of your own emotional wellbeing. Start by thinking about how you have coped with difficult times in the past, and see some strategies that may help you manage your feelings.
A sense of satisfaction
While caring can be challenging at times, many carers say that 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.
Although everyone is different, the following feelings are experienced by most carers at some point.
Caring for someone with cancer can be frightening and overwhelming. You may feel worried about:
- the physical and emotional health of the person you're caring for
- not knowing enough about the treatment and the health professionals involved in their care
- having to wait for test results
- being responsible for giving medicines
- how you will manage other responsibilities, such as work or parenting
- how you will make ends meet if your financial situation is affected
- having so many things out of your control
- not knowing what the future holds
- who to call in an emergency
- the possibility that the person you're caring for will die
- the roles of everyone involved in the care of the person.
Many carers say that learning more about the cancer helps them feel more in control, while others feel overwhelmed by the amount of information available. You need to do what feels comfortable for you. Depending on your situation, it may be helpful to read more about strategies for managing medicines, managing finances and working while caring.
Anger and frustration
You may feel angry or frustrated for many reasons, including:
- having to be the carer
- managing the extra responsibilities
- navigating a complex and confusing health care system
- believing that family and friends could do more to help
- having future plans disrupted
- a shift in the nature of your relationship
- having little or no time for activities you used to enjoy
- dealing with the mood changes, anger and frustrations of the person with cancer
- trying to juggle caring with family responsibilities and/or paid work
- feeling the person you're caring for does not seem to really appreciate the hard work and the sacrifices you're making.
The demands, difficulties and limitations of looking after someone with cancer are often stressful. Physical symptoms of stress can include trouble sleeping, headaches, tense muscles, high blood pressure, upset stomach, changes in appetite, and heart palpitations, as well as feeling generally tired and unwell. Emotional symptoms may include feeling overwhelmed or drained, being irritable or moody, feeling agitated, having racing thoughts, and losing confidence in yourself.
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.
Guilt is one of the most common emotions that carers experience. Some carers have said they feel guilty about:
- feeling angry and resentful
- taking a break from caring (or even just wanting to)
- 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.
It is easy to become isolated or feel lonely as a carer. You may feel too busy or guilty to socialise or maintain contact with 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.
Even if you have many people to support you, you can still feel alone and isolated. You may feel that no-one quite understands what you are going through. This is a common reaction.
Research shows that depression is common among carers. 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 and is more than a mood you can snap out of.
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
- feeling tired all the time and/or having trouble concentrating
- having problems sleeping
- feeling restless, agitated, worthless or guilty
- relying on alcohol and sedatives to cope or sleep
- feeling that life isn't worth living.
There are a number of ways to manage depression. Talk to your doctor about your options. Visit beyondblue.org.au for more information about depression and anxiety.
Loss and grief
Many people associate loss and grief with dying. However, feelings of loss and grief can also happen after a diagnosis of cancer. It's natural to miss activities you used to enjoy, such as work, regular exercise or socialising. You may also be dealing with financial changes and/or have lost the future you thought you would have.
As a carer, you may feel that your relationship with the person you are caring for has changed. If the person is your partner and the cancer has affected your sex life, you may miss the physical intimacy. Changes in roles and taking on new responsibilities can cause stress between you and the person you're caring for.
The person may also be experiencing loss and grief, especially if they have lost independence or the ability to do things they used to do. This may cause them to be angry or irritable with you too.
It can take time to adjust to the changes and challenges you are facing. How relationships can change outlines some of these changes and how to manage them. For more strategies, read Emotions and Cancer – call Cancer Council for a free copy. It may also help to talk to friends and family about how you are feeling, or you can speak to a health professional by calling Cancer Council on 13 11 20.
Ways to manage your emotions
For many carers, it is hard to find the time or energy to look after their own emotional wellbeing. However, some simple strategies can help you feel more in control.
Clear your mind
Some hospitals, cancer support groups and community centres offer relaxation and meditation groups. You could also try a local yoga or tai chi class.
Regular exercise has been shown to help with feelings of anger, stress, anxiety and depression. Remember that some exercise is better than none, and even a brisk walk around the block can help clear your head.
Take a break
It is important to take time to care for yourself. Do something you find relaxing such as listening to music, reading, taking a bath or having a massage. Respite care is available for short or longer periods and may give you the break you need.
Talk it over
Share your concerns with the person you care for, or with someone else you trust. Another option is to call Cancer Council on 13 11 20 or Carers Australia on 1800 242 636 to talk to someone about how you are feeling. They can listen to your concerns without judgement and help you find further support if you need it. You can also call Lifeline 13 11 14 for crisis support at any time of day or night.
Speak to your doctor
If at any stage you feel that you are not coping, they can refer you to a counsellor and prescribe a short course of medicine if needed.
Find out what to expect
Information can help you understand what to expect, and plan for any changes. This may make you feel more secure.
Be kind to yourself
No-one is a "perfect" carer. It is often a demanding role and everyone has bad days. Try to avoid using the words "should" or "must", and accept that you are doing the best you can.
Join a support group
There are face-to-face, internet and telephone support groups for carers. These groups meet regularly to share their experiences. See more information about support groups.
Use technology such as email, Facebook or a blog to stay in touch with family and friends. You can also visit Cancer Council Online Community to connect with others in a similar situation.
If you appear to manage on your own, people may assume you're okay, but they often do want to help. Reduce your workload by accepting help with practical tasks such as shopping or housework.
Expert content reviewers:
Tina Chivende, Social Worker, Cancer Psychosocial Service, Canberra Region Cancer Centre, ACT; Gabrielle Asprey, Telephone Support Group Facilitator, Cancer Council NSW; Dr Ben Britton, Senior Clinical and Health Psychologist, Calvary Mater Newcastle and John Hunter Hospital, and Conjoint Lecturer, School of Medicine and Public Health, University of Newcastle, NSW; Valmai Goodwin, Psychologist, Cancer Counselling Service, Cancer Council QLD; Karen Hall, 13 11 20 Consultant, Cancer Council SA; Zoe Mitchell, Senior Social Worker, Palliative Care, Fiona Stanley Hospital, WA; Amber Rose, Consumer; Carolina Simpson, Policy and Development Officer, Carers NSW.