Caring for Someone with Cancer
Caring for someone with advanced cancer
This section is about caring for someone who has been told they have advanced cancer. Most cancers are diagnosed at an earlier stage, so this section may not be relevant to your situation. We hope that this information helps you provide comfort and support to the person you’re caring for.
When cancer won’t go away
Some people’s cancer may be at a late stage when they are first diagnosed. For others, the cancer may have spread or come back (recurred) after treatment. Advanced cancer means the cancer is unlikely to be cured, but it can often be controlled for months or, sometimes, years.
Changes to the caring role
Some people live with advanced cancer as a chronic illness for a long time, so there may not be much difference in your caring role immediately. Other people may feel very unwell, so your responsibilities as a carer are likely to increase and may become more complex almost overnight. This may give you little time to adjust to the new situation.
How you might feel – Caring for someone with advanced cancer can feel overwhelming. You may be trying to support the person, while coming to terms with the diagnosis yourself. You may be experiencing a range of strong emotions such as denial, fear, anger, sadness and grief. A diagnosis of advanced cancer also means living with uncertainty about what lies ahead, and this can be challenging.
Family and friends – As well as having to manage your own emotions, you may also have to tell other family members and friends. This can be time-consuming and difficult, and their reactions may add to your distress. Use text messages, email, blogs or social media, or write one letter and send copies to people. If you need support, talk to your GP or a hospital social worker, or call Cancer Council 13 11 20.
After a diagnosis of advanced cancer, some people want to know how long they have left to live. Others prefer not to know. It’s a very personal decision.
If the person you are caring for prefers not to know, you may still want some idea of what to expect. This can help you understand what is happening and prepare for the changes. You can ask the person if they will give their treatment team permission to speak to you alone.
The health professionals may give you a general idea of the person’s life expectancy. This is known as the prognosis and it is likely to sound a bit vague.
They will probably talk about the time in terms of days, days to weeks, weeks to months, or months to years. The actual time could be shorter or longer, because each individual responds differently to treatment.
What palliative care is – Palliative care is person-centred care that helps people with a progressive, life-limiting illness to live as comfortably as possible. The goal of palliative care is to improve quality of life for both the person with cancer, and their family and carers.
Palliative care doesn’t mean giving up hope. It is not just for end-of-life care – it may be beneficial for people at any stage of advanced cancer.
Palliative care services – The palliative care team will help identify services that can offer emotional and practical support to you in your caring role. These may include:
- relief of the person’s symptoms (e.g. pain, breathlessness, nausea)
- help organising equipment for home (e.g. mobility aids, special beds)
- help with discussions about sensitive issues and suitable care options
- links to other services such as home help and financial support
- support for people to meet cultural obligations
- counselling, grief and bereavement support
- support for emotional, social and spiritual concerns
- referrals to respite care services.
If the person chooses not to have active treatment for the cancer, palliative care can help ensure any symptoms are well controlled and the person is comfortable. The palliative care team can help you understand what is happening and what happens next.
Our cancer care team talked about how palliative care could make my husband’s life easier and more meaningful. I found it so useful to know that help was available when I needed it.” ANNA
How palliative care works
When to start – Palliative care is useful at all stages of advanced cancer and can be given alongside active treatment for cancer. Connecting with the palliative care team early on can help improve quality of life.
Who provides care – Palliative care may be led by a GP, nurse practitioner or community nurse or, if the person’s needs are complex, by a specialist palliative care team.
Where care is provided – The palliative care team will work with you and the person you are caring for to plan the best place for care. This may be at home supported by community palliative care services, in hospital, at a residential aged care facility or in a palliative care unit (hospice).
Your role – Carers are considered part of the palliative care team. With the agreement of the person being cared for, the palliative care team will include you in decisions about their care and treatment.
Accepting help – If you have been providing most of the person’s care, it can be difficult to let other people take over some tasks. As the caring demands are likely to keep increasing as the cancer progresses, accepting help can mean you can spend more quality time with the person you’re caring for.
Support for common issues carers face
Although carers may need support at any stage of cancer, their responsibilities usually increase if the disease progresses. Below are some common issues you may face as you care for someone with advanced cancer, the people who can help and where you can find more information. Your hospital or treatment centre may also host workshops or discussions about cancer, treatments and side effects.
Support with medical care
Making treatment decisions – It can be confronting for the person to work out whether to keep having treatment for the cancer. This decision is theirs alone, but they are likely to discuss it with you. If you are the person’s substitute decision-maker, you may feel a heavy responsibility when making this decision for them. Who can help? palliative care team; cancer specialists; GP; social worker.
Managing symptoms – You may find that symptoms such as pain become more complex to manage, especially as the person is likely to experience several symptoms at the same time. Early medical attention can provide relief and make symptoms easier to manage. Who can help? palliative care specialist; pain specialist; cancer specialists; GP; community nurse; physiotherapist; occupational therapist; exercise physiologist; after hours GP.
Setting up the home – To make it easier and safer to care for someone at home, you may need to make some changes (e.g. handrails on steps and in the shower) or buy or rent equipment (e.g. shower chair, bedpans, walker, hoists to help lift the person, hospital bed). Talk to your health care team to see if there is any financial support you may be able to get for home modifications. Who can help? occupational therapist; physiotherapist; Home Modification Information Clearinghouse..
Preparing food and drink – It can be challenging to prepare food and drink for a person with advanced cancer, especially if they find it hard to swallow or have lost their appetite. Try not to force them to eat or drink. In the late stages, it is natural to have little appetite, but this can be distressing for carers. Who can help? dietitian; speech pathologist.
Providing personal care – You may have to: help the person get in and out of bed, shower or wash their hair; give them a sponge bath; help them on and off the toilet or commode; help them use a urine bottle or bedpan; and help them to wipe themselves. Ask an occupational therapist or physiotherapist about suitable equipment and how to support the person’s movement safely and correctly. You may need someone else to help you. Who can help? occupational therapist; physiotherapist; palliative care team; community care workers; Carer Gateway 1800 422 737;
My Aged Care 1800 200 422.
Coping with the extra workload – You may find it difficult to manage extra tasks, especially if you have other responsibilities such as a job or looking after children, or if you have your own health issues. Talk with family and friends about ways they can help. Who can I help?
Carer Gateway 1800 422 737; My Aged Care 1800 200 422; social worker.
Dealing with emotions – A diagnosis of advanced cancer can be distressing for all involved, and it is common to experience grief, anxiety and depression. Seek professional help if these emotions are making it hard for you to function or enjoy some aspects of life. Who can help? GP or palliative care team; social worker; psychologist, counsellor or psychiatrist; support groups; Cancer Council
13 11 20; Carer Gateway Counselling Service 1800 422 737; Beyond Blue