How you might feel?

Common reactions

This section describes some of the emotions commonly experienced by carers. There is no right or wrong way to feel. Although everyone is different, many carers find it reassuring to know that their feelings are a normal reaction to the demands of the role.

Fear and anxiety

Cancer treatments and outcomes have greatly 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.

Stress

Looking after someone with cancer can be stressful. It’s common for carers to say they feel out of control or under extreme pressure. If stress is ongoing, it can affect the way you react to people around you, and could lead to exhaustion and burnout. Symptoms of stress include:

Physical – 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 – feeling overwhelmed or drained, being irritable or moody, feeling agitated, having racing thoughts and losing confidence in yourself.

Anger and frustration

Feeling angry or frustrated can happen for many reasons, including:

• having to be the carer and take on extra responsibilities
• navigating a complex and confusing health care system
• believing that family and friends could do more to help
• having short-term and long-term 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 emotions of the person with cancer
• trying to juggle caring with other family responsibilities or paid work
• feeling that the person you’re caring for does not seem to really appreciate the hard work and 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. Or they may not be able to visit because of COVID-19. Some people are uncomfortable being around someone who is ill. Maybe you did a lot of activities 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.

Depression

Feeling down or sad after someone you love is diagnosed with cancer 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 and visit Beyond Blue for more information.

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 stop enjoying your regular activities or miss activities you can no longer do, such as work, exercise, socialising or volunteering. It is normal to feel grief both for the “normal” you have lost and 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. Changes in roles and taking on new responsibilities can cause stress between you and the person you’re caring for.

Finding ways to cope

Caring for someone with cancer is not always easy or satisfying. It may feel hard to find the time or energy to look after your own wellbeing. The simple strategies described below may help you cope and feel more in control.

Clear your mind – Relaxation and meditation techniques can help carers maintain their energy levels and improve their quality of life. Listen to our relaxation and meditation podcast Finding Calm During Cancer. You could also try a local yoga or tai chi class.

Connect with others – You can share your thoughts and experiences with other carers through support groups. This can be by phone, in person or online.

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. Acknowledging the benefits you get from caring may help you feel better.

Seek support – If at any stage you feel overwhelmed, speak to your GP, as counselling or medicine – even for a short time – may help. You may be referred to a psychologist. Beyond Blue has information about coping with depression and anxiety. You can also call Lifeline on 13 11 14 for crisis support at any time of the day or night. Some people find online programs or smartphone apps helpful in managing depression and anxiety.

Draw on spirituality – Some people find meaning and comfort in spiritual practices, such as prayer, meditation or quiet contemplation. It can be challenging when someone you care for is diagnosed with cancer, and it may help to talk about your feelings with a spiritual care practitioner, religious leader or counsellor.

Find out what to expect – It may help to learn more about the cancer and treatment options. Going with the person to medical appointments can give you a better understanding of what to expect and how to plan for any changes.

Deal with uncertainty – When the person you care for is having treatment, life may seem less predictable and it may be hard to plan ahead. Carers often find this uncertainty stressful and feel that their life is in limbo. You may find it easier to cope if you focus on those things you can control right now. Letting go of what you cannot control leaves you with more energy and mental capacity.

Get creative – If you are having trouble expressing how you are feeling, you could try writing a journal or you may prefer to keep an art journal of sketches and notes. Looking back through journal entries can give some perspective – you may see that some days are better than others.

You don’t know if you’re making the right decisions at the time, but down the track, you can look back and know that you did what you could.” ROSS