Caring for Someone with Cancer
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Caring for Someone with Cancer
How will you feel?
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 chapter 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. If you have a history of anxiety or depression, this could make you more vulnerable now. It’s important to manage emotional distress.
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 a sense of satisfaction when you’re caring for someone on a day-to-day basis. But some people find that when their caring role ends, they are able to reflect on the positive and rewarding parts of their caring experience.
Although everyone is different, the following feelings are experienced by most carers at some point.
Fear and anxiety
Cancer treatments and outcomes have dramatically improved in recent years, but caring for someone with cancer can still be frightening and overwhelming. It’s natural to worry about the treatment, side effects, test results and the long-term outcome, as well as the impact that the diagnosis will have on your family, work and other responsibilities.
Many carers say that learning more about the diagnosis and treatment options 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.
Stress
Looking after someone with cancer can be 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.
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
- not sleeping well
- 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 other family responsibilities 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.
Guilt
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 enough or feeling they aren’t doing a perfect job as a carer.
Loneliness
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. Joining a support group may help you connect with others in a similar situation.
Depression
Feeling down or sad after a cancer diagnosis is common. It’s a natural response to loss and disappointment, and usually lasts a short time without severely affecting your life.
If you have continued feelings of sadness for several weeks, have trouble getting up in the morning, and have lost interest and pleasure in activities you used to enjoy, you may be experiencing depression. Research shows that depression is common among carers.
There are a number of ways to manage depression. Talk to your health care team 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. But feelings of loss and grief can also happen when you are caring for someone diagnosed with cancer. It’s natural to miss activities you used to enjoy, such as work, regular exercise, socialising or volunteering. It is normal to feel both grief for the “normal” you have lost and grief at the need to adjust to a “new normal”.
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.
It may feel hard to find the time or energy to look after your own emotional wellbeing. These simple strategies may help you cope and feel more in control.
Try complementary therapies – Listen to Cancer Council’s Mindful Mediation and Relaxation recordings, these are also available as CDs. Call Cancer Council 13 11 20 to order your free copies. You could also try a local yoga or tai chi class.
Be active – Research shows that regular exercise can help with feelings of anger, stress, anxiety and depression. It can also improve fatigue and sleep. Even a brisk walk around the block offers benefits.
Take time for yourself – Make time each day to do something you find relaxing. Respite care is available for short or longer periods and may give you the break you need.
Talk about how you’re feeling – If at any stage you feel overwhelmed, speak to your health care team, as counselling or medicine – even for a short time – may help. You may be referred to a psychologist. The organisation Beyond Blue has information about coping with depression and anxiety. You can also visit Lifeline or call them on 13 11 14 for crisis support at any time of day or night.
Speak to your GP – If at any stage you feel that you are not coping, your GP 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.
Connect online – Use technology such as email, Facebook or a blog to stay in touch with family and friends. To connect with others in a similar situation, visit Cancer Council Online Community.
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This information is reviewed by
This information was last reviewed September 2020 by the following expert content reviewers: Dr Laura Kirsten, Principal Clinical Psychologist, Nepean Cancer Care Centre, NSW; Mary Bairstow, Senior Social Worker, Cancer Centre, Fiona Stanley Hospital, WA; Anne Booms, Nurse Practitioner – Supportive and Palliative Care, Icon Cancer Centre Midland, WA; Dr Erica Cameron-Taylor, Staff Specialist, Department of Palliative Care, Mercy Hospice, Calvary Mater Newcastle, NSW; Tracey Gardner, Senior Psychologist, Cancer Counselling Service, Cancer Council Queensland; Louise Good, Cancer Nurse Consultant, WA; Verity Jausnik, Senior Policy Officer, Carers Australia; David Larkin, Cancer Supportive Care Manager, Canberra Region Cancer Centre, Canberra Hospital and Health Service, ACT; Kate Martin, Consumer; John McMath, Consumer; Simone Noelker, Physiotherapist and Wellness Centre Coordinator, Ballarat Regional Integrated Cancer Centre, VIC; Tara Redemski, Senior Physiotherapist – Cancer Care, Gold Coast University Hospital, QLD; Dean Rowe, Consumer; Chris Sibthorpe, 13 11 20 Consultant, Cancer Council Queensland.