Many carers say that providing care can affect their health and wellbeing, relationships, career and finances. Caring can be rewarding, but it may also be difficult at times, both physically and emotionally.
The responsibility of attending to the needs of the person you are caring for may mean that you neglect your own needs. Some carers have said they felt like they lost their identity when they started the caring role. It may feel as though your career, interests and health are no longer important or have to take second priority.
It's important to think about yourself for your own sake, but if your natural inclination is to focus completely on the person with cancer, remember that looking after yourself will also help you provide better quality of care over a longer period of time.
As carers are busy looking after someone else, they can find it difficult to find time to look after their own health and wellbeing.
When they do notice that they're not feeling well, they might downplay their own health needs. You can acknowledge that you are not feeling well without comparing it to how the person with cancer is feeling.
Maintaining fitness and eating well can help carers cope with the physical and emotional demands of caring.
Ways to stay healthy
- Eat healthy meals and snacks. If the person has long appointments
- or is in hospital, you may need to bring healthy food from home.
- Try to get enough sleep and rest. Tiredness and exhaustion often make everything seem harder. If your sleep is disrupted by your caring responsibilities, try to grab a few minutes' rest throughout the day whenever the opportunity comes up.
- Avoid using alcohol or cigarettes to relax. These may seem to help for a short time, but they contribute to other problems.
- Try to exercise for 15–30 minutes each day. This can increase your energy levels, help you sleep better and improve your mood. If you can leave the house, a walk, run or swim may help. An exercise bike or a yoga/meditation mat can allow you to exercise at home.
- See ways to look after your emotional health.
- Have regular check-ups with your own doctor and also go to see them if you notice changes in your health such as fatigue, sleep problems, weight changes or depression.
Asking others for help
Asking for and accepting assistance is sometimes difficult. However, if you seem to be coping, family and friends may not realise you need help. They may be waiting for you to ask because they don't know how to offer or fear they will be intruding or disturbing you. Let them know their support is appreciated and that it's not an interference. Asking for help is not a sign of failure, and it may relieve some pressure and allow you to spend more time with the person you're caring for.
You may want to hold a family meeting to discuss how everyone can help and then prepare a roster. Tasks that can be done by or shared with others include:
- doing household chores such as cooking, cleaning, laundry,
- ironing, shopping or gardening
- driving the person with cancer to appointments and/or
- attending appointments with them
- picking up children from school or other activities
- looking up information
- keeping others updated
- staying with the person you care for while you take a break.
How to cope
Caring for someone with cancer is not always easy or satisfying. Many carers say they feel overburdened and resentful. The following strategies may help you cope:
Focus on the value of caring
Acknowledging the rewards of caring may help you feel better. These include learning new skills, strengthening your relationship as you demonstrate your love and commitment, and gaining satisfaction from providing care to someone in need.
Set boundaries and limits
Outline what you are comfortable helping with, the level of workload you can manage, and what your own needs are. For example, if you find it difficult to wash or provide intimate care to the person you are looking after, investigate alternatives such as regular visits from a care worker.
Organise your time
It may not be possible to do everything you want to do, so prioritise your weekly tasks and activities. You can use a diary to keep track of information and appointments. Identifying and dealing with immediate priorities can confirm that you are on track, even when the future is uncertain.
Keep a journal
Writing down what has been happening may allow you to release your worries or frustrations. It's also a chance to reflect on how you're coping and identify areas you need assistance with. Reading back through journal entries can provide perspective – you may see that some days are better than others.
Don't expect to be perfect
Sometimes you may feel like you could have done something differently or handled a situation better. Allow yourself not to be perfect. Each new day brings a fresh start and a chance to remind yourself that you're doing your best.
Take time for yourself
Try to stay involved in activities you enjoy. It's okay to find pleasure in life, despite the difficulties, and to want to stay connected to and talk about things other than cancer. Even short interludes may give you the chance to do something for yourself (e.g. relaxation/meditation, short walks, reading, music, brief social contact).
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 can't control leaves you with more energy and mental capacity.
It may also help to learn more about cancer and possible treatment options. Going with the person to doctors' visits can give you a better understanding of the treatment plan.
If caring becomes too much
You might find providing care too difficult, particularly if the person you're caring for insists you do all the caring rather than involving others. It may be that the physical demands are becoming too much, particularly if you are older or have your own health issues. You could also find the role is taking an emotional toll.
Perhaps you know you need support but don't want to disappoint the person you're caring for. Try talking to your GP or the social worker at the treatment centre, or calling Cancer Council on 13 11 20.
You might also find it helpful to see a counsellor, either in person or via phone, email or Skype. The counsellor may help you see ways to make caring more manageable.
Your GP or Cancer Council can refer you to a counsellor. You can also access the National Carer Counselling Program by calling 1800 242 636. For 24-hour crisis support, call Lifeline on 13 11 14.
There are about 275,000 carers under 25 in Australia. The Carers Associations in each state and territory offer information and support tailored for young carers. Visit youngcarers.net.au or call 1800 242 636 to find out more.
Taking a break (respite care)
Respite care allows carers to have a break. It may be provided at home, in a residential care facility (such as an aged care facility) and, in some cases, in a hospital or palliative care unit (hospice). It can be for a couple of hours, overnight or a few days. You can access respite care for any reason, including to:
- take time out to access health care for yourself
- visit friends or other family members
- catch up on some sleep at home
- run errands, such as grocery shopping
- attend events, such as a school assembly or a wedding.
Some carers don't access respite care because they feel guilty or anxious about leaving the person they are caring for. However, the service exists because caring can be difficult and may affect your wellbeing. By taking a break, you will probably find that you can be more effective in your caring role. The person you are caring for can also have a break from you and interact with other people.
Commonwealth Respite and Carelink Centres, located across Australia, provide information on local carer respite and support services. Call 1800 052 222 during business hours, or 1800 059 059 for emergency respite support outside business hours.
Working while caring
Many people who care for someone with cancer are also employed. They may work full-time, part-time, casually or have their own business. Working carers often have to balance the needs of the person they are caring for with the demands of the workplace. If the person with cancer does not work and is dependent on you, there may be financial pressure on you to continue earning an income.
Your decision to continue working will probably depend on a number of factors, including:
- how unwell the person with cancer is
- what your caring and work duties involve
- the amount of help or respite care available
- your finances
- what will give you peace of mind.
Before making changes to your working arrangements, talk over your thoughts with your employer, family and friends. They may be able to support you with flexible working arrangements.
To find out more about working while caring for someone, visit workingcarers.org.au or carersnsw.org.au/advice. You can also contact the Carers Association in your state or territory for support and counselling. Visit carersaustralia.com.au for links to the relevant website or call 1800 242 636. See also Cancer, Work and You and Cancer Care and Your Rights.
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.