On this page: Make time for yourself ι Care for your body ι Deal with uncertainty ι Talk with family and friends ι Organise your time ι Focus on the value of caring ι Asking others for help ι Reviewers
Caring can be rewarding, but many carers also find it demanding, both physically and emotionally. If you have been caring for someone for some time, you may feel exhausted. You might feel guilty making time for yourself. However, looking after yourself can help relieve the stress and exhaustion of caring, and reduce feelings of frustration and isolation.
Some carers have said they felt like they lost their identity when caring. You may feel like your career, interests and health are no longer important or have to take second priority.
Carers can often forget to look after their own well-being. When they do notice that they're not feeling well, they tend to downplay their own health needs. You can acknowledge that you're not feeling well without comparing it with how the person with cancer is feeling.
When the person you care for is having treatment, life may seem less predictable. You may have to put some plans on hold because you are not sure what is ahead. Carers often find this uncertainty stressful. You may find it easier to cope if you focus on things you can control.
You may be able to schedule doctors' visits so you can attend with the person you're caring for. It may also help to learn more about cancer and possible treatment options, so you feel like you have more knowledge about what is happening.
Talking about how you feel about caring, particularly if you are feeling angry (venting) may help you deal with these emotions.
You may feel uncomfortable talking to the person with cancer because you think they have a lot to deal with already and you are meant to be their support. It's understandable if you don't want to talk to the person with cancer, but try not to hold in all your feelings. You can share your feelings with friends or family members, or join a support group for carers.
"When my husband was first diagnosed with cancer, people were very supportive, but as the illness has continued people have gotten used to it and forget I still need help." — Carer
It may not be possible to do everything you want to do. You will need to manage your time.
Looking after someone with cancer is not always easy or satisfying. Many carers say they feel overburdened and resentful. However, many carers say focusing on the value they were adding through caring helped them to cope and made them feel better.
Some of the rewards of caring include:
You may want to do all that is possible to help, especially at first. If the condition of the person you're caring for changes over time, you may have to take on more tasks, which can make it harder to cope.
Some carers say they feel as though they have failed if they can't manage all the responsibilities of caring by themselves. Others worry that asking for help will be interpreted as a sign that they are not coping with caring, and their role will be taken away. You may feel that everything should be provided by the family and that outside help is not necessary.
Asking for and accepting assistance is sometimes difficult. You may find it hard to let others know what help you need. If you seem to be coping with everything, family and friends may not realise you need help. They may be waiting for you to ask for help because they don't know how to offer or fear they will be intruding or disturbing you.
There are some ways you can determine what needs to be done and who could help:
You may want to hold a family meeting to discuss how everyone is going to help. Tasks that are often done by or shared with others include:
"At first, I didn't ask for help, because I didn't want to bother anyone. I see caring as my duty; I have to do it. I now realise people genuinely want to help. They need my help to show them how." — Carer
To establish a happy and long-lasting caring relationship, it may help to set boundaries. Outline what you are comfortable helping with, the level of workload you can manage, and what your own needs are. The help of family, friends or support services can be used to fill the gaps. For example, if you find it uncomfortable or are physically unable to wash or provide intimate care to the person you care for, talk to a community nurse about providing this care.
Many people being cared for look forward to a change from their usual care arrangements as much as their carers do. However, sometimes the person with cancer may not want you to take a break, because they're worried about what it means for them. Explaining how a break will benefit both of you may help.
"My husband Rick was diagnosed with a terminal brain tumour called a glioblastoma.
"I cared for Rick at home over 15 months. For the first year - even after brain surgery - he was quite capable and selfsufficient. He was very fit before the diagnosis.
"Rick was not allowed to drive and I drove him to all of his medical appointments. Our daughter Suzy and friend Peter helped out as well. Sometimes Peter would take Rick to blood tests and out for coffees. This was a nice break for me.
"After a year, Rick deteriorated quickly. He lost his appetite so I made light, nourishing meals. The meals also helped me stay well, because I didn't want to get sick. As Rick became sicker, I got advice from occupational therapists about the right way to lift and move him.
"Rick became paralysed and after a while, I couldn't provide care at home. We moved Rick to the palliative units in hospital and a nursing home. He was only there 10 days before he died. It was hard, but I know I did the best I could caring for Rick at home during his illness."
We thank the reviewers of this booklet: Jane Ussher, School of Psychology, University of Western Sydney, NSW; Piero Bassu, Consumer, NSW; Lindy Cohn, Cancer Information Consultant, Cancer Council NSW Helpline; Dr Mandy Goldman, Cancer Counsellor, Private Practice; Christine Harris, Consumer; Joanna Jarrald, Assistant Project Coordinator, Cancer Council NSW; and Colleen Sheen, Executive Manager, Policy, Strategy and Communication Unit, Carers NSW.