We’ve developed this guide to support you on your care journey and share practical ways you can live life to the fullest while caring for a loved one with cancer.
Caring for a family member or friend with a life-threatening disease like cancer often means being very involved, and extending a lot of support and encouragement.
Every care situation is different and can change over time. One day, you may be providing emotional support and hands-on care. The next day, you may be helping with medication or coordinating appointments. You may also find yourself doing more everyday tasks like cooking and cleaning. Caring for someone is rarely just one thing, which is what can make it so challenging.
These new responsibilities can be demanding and sometimes stressful – but there are ways to make the care journey less stressful. You’ll need to make sure to plan tasks, take care of yourself and take advantage of the help that’s available. Also, remember that you need as much information and support as the person in your care.
Caring for a loved one with cancer can also be very rewarding: you may develop a closer bond with your loved one, and you may discover new skills and inner strength and resilience, as well as a new appreciation of supportive family and friends.
Being a carer is a big job, so you’ll need to know what to expect.
You may be involved with:
As the disease progresses, changes may take place in the person with cancer. These may include changes in:
Many carers often prioritise their loved one’s need ahead of their own. But self-neglect can have a serious impact on a person’s health and wellbeing. If you neglect yourself, it will make it hard to provide quality care to your loved one.
If the demands of caregiving go beyond your ability to cope, you may start to feel burned out. Burnout can also be caused by the mental stress of seeing a loved one undergo cancer treatment and being concerned about the outcome. Burnout often shows up as fatigue, stress and an overall lack of energy.
Compassion fatigue, another kind of burnout, can happen when someone is very active and involved in the care of a person who is suffering. The carer can become overwhelmed by feelings of being helpless, and with few reserves or resources to replenish their own well of energy.
If you recognise any of the following symptoms of carers stress in yourself, talk with a healthcare professional about ways you can improve your health and wellbeing:
Feeling stressed and overwhelmed is very common among carers. You’ll feel better and be better able to care for your loved one if you find ways to manage stress and take care of your own health.
Remember that you’re allowed to ask for support - including professional help - before you feel overwhelmed.
The person with cancer needs and wants you to be a healthy care partner. Follow these suggestions so you can be at your best to help yourself and your loved one:
Good communication with healthcare professionals can positively impact you and your loved one’s wellbeing. Here are some tips:
Even after the treatment is over, cancer survivors often deal with side effects from treatment.
They also need to adjust to other changes they’ve experienced. The following tips can help you manage your expectations after treatment has ended.
Be aware of your feelings.
It’s normal to have mixed feelings after the treatment ends. You may feel:
Take time to reflect on your experience with cancer. And remember that you and your loved one, and other family and friends, will need different amounts of time to work through their emotions.
Make time for yourself
Carers often put their own needs aside during treatment. After your loved one’s treatment is over, think about how to best care for yourself. Consider:
Let others help you
Asking for help is a sign of strength. While you may be tempted to tell everyone that you and your loved one are doing fine, consider that friends, neighbours, colleagues and others who stayed away during treatment may now be able to support you. Think about what types of help would be welcome. The clearer you are about your needs, the easier it will be to get the help you need.
Talking with family
After treatment, communication is still as important as it was during treatment. This can be an unpredictable time, and your family may need time to adjust. Be sure to listen to each other, and be patient and supportive.
If your loved one’s cancer progresses, caring responsibilities can get more difficult. It’s more important than ever - for you as well as for the loved one with cancer - to take care of yourself and reach out for help.
You may experience the following feelings; these are normal and common.
Your loved one’s feelings
You’ll also need to consider how the person with cancer feels. They may fear:
Talking to your loved one with advanced cancer
When someone you love has advanced cancer, it’s common to struggle with what to say, worrying that you will say the wrong thing. But remember, showing that you care is more than the words you choose. Both you and your loved one likely share the same thoughts and fears about the end of life.
While it’s difficult, you should try to talk to your loved one about the stage of the cancer, preparing for the future, your feelings about death and their end-of-life wishes.
You may need to decide whether the person with advanced cancer should live at home or be moved to a care facility or hospice. When making these decisions, consider:
Once your loved one dies, your grief may become more intense. Everyone grieves differently:
These feelings are normal. Although it may vary in intensity, grief can come and go for many months and can occur when you least expect it. If you feel you need support through the grieving process, you can seek help from hospice staff, a mental health expert or a bereavement group.
You may be a spouse, partner, child, family member or friend providing care on a regular basis to someone diagnosed with cancer. Your role as a carer is an important one.
Accept that you may need help with everyday household and caregiving tasks. Family and friends can be vital members of your circle of care. Tell your friends and family that you need their help. Most people want to help, but they don’t know what you need. Friends often worry that offering help might seem intrusive, so let them know their help is welcome. Don’t hesitate to be specific with your support needs.
Keep a list of projects, errands and services that others can do. Then, the next time someone offers to help in some way, you can guide them on how to best support you.
People with cancer often need significant help with daily care. In many cases, family and friends may not be able to do it alone, and additional help may be needed. Below we have included a list of resources and organisations that may be able to support you further.
Date of Preparation: February 2020