Who is a carer?

A care r is a person who gives assistance and support to people who need help with their daily activities because of age, illness or disability. This may be a partner, family member, neighbour or friend. They do not get paid wages for this role but may receive financial support.

There are also employed support workers who provide care and assistance as a paid service. This is different from a carer. People with cancer may need carers to help them with some activities, especially while they are having treatment.

Carers may help in many different areas of daily life, including:

• emotional support
• practical support such as providing transport or organising appointments
• personal care such as dressing, showering and feeding
• medical care such as giving medicines
• managing finances such as paying bills
• helping in emergencies
• legal matters such as planning a will or an advance care directive

Many people, especially those who care for close family members, may not see that they are taking on the role of a carer.

There are financial support and other services available to carers in Australia that you may be eligible for.

Does the stage of the cancer affect the care needed?

Caring may involve helping in many different areas of life. The level and kind of care a person living with cancer needs will depend on many factors, including:

• the type and stage of the cancer
• the type of cancer treatments the person is receiving
• any side effects from the cancer or its treatment
• the person's age and overall health

This means that caring for someone living with cancer may involve a range of activities, from seeking information or resources and attending medical appointments, to providing practical daily assistance, such as helping with dressing and toileting.

Should the person I care for have an advance care directive?

An advance care directive is a documented plan that details a person's values and treatment preferences. It can be used if the person is unable to make treatment decisions for themselves in the future. An advance care directive must be made voluntarily and by a person who is over 18 years of age and has the legal capacity to make decisions.

As part of preparing an advance care directive, a substitute decision maker can be appointed by the person to make treatment decisions if they are no longer able.

The person you care for can update, revise or change their advance care directive at any time.

Visit Advance Care Planning Australia for more information.

What kind of medical information and advice can I get as a carer?

Most people living with cancer are looked after by a medical team. As a carer, you are part of the team. You may be the person who speaks with the team and prepares the person living with cancer for their appointments. The person you are caring for must give consent before the healthcare team can talk with you about their care when they are not present. This should be written in their medical record.

How can I help the person in my care stay mobile?

Staying mobile (being able to move) is important, but cancer symptoms and treatment can make it more difficult. The medical team can help you support the person in your care to stay mobile.

You can request a referral to an occupational therapist or physiotherapist who can help improve the mobility of the person you are caring for.

How can I help the person in my care if they are confined to bed?

If a person is very unwell, they may be confined (limited) to bed for long periods. You can help them stay healthy and comfortable by:

• checking their skin for any sores
• changing their position often to prevent pressure sores
• making sure you have what you need and the skills to support their personal care, such as toileting, brushing teeth, bathing and nail care, or by seeking help if needed
• helping them maintain good nutrition
• changing their clothing and sheets for cleanliness and comfort

What emotional support is available for me?

If you need to talk to someone about your mental health, call Beyond Blue on 1300 22 4636.

Being a carer can be stressful and demanding, so it's important to make sure you look after your own physical and mental wellbeing. You can seek support from:

• your family and friends
• your doctor
• online and telephone support services
• support groups

What financial support is available for me?

There are 2 main Centrelink payments for carers who are looking after people who are unable to care for themselves:

• Carer Allowance — available to eligible carers if you are caring every day for at least 12 months or care for someone with a life-limiting condition.
• Carer Payment — available to eligible carers if caring stops you from working full time.

If you are eligible for either of these payments, you can also receive the Carer Supplement. This is an annual lump sum to help cover the costs of caring.

See the Services Australia website for more information and to check your eligibility.

What help can I outsource?

As a carer, you may feel responsible for many tasks. You may feel uncomfortable asking for help. Remember that you don't need to do everything by yourself — often, family and friends of the person you are caring for want to help but may not know how.

Ask for help with everyday tasks such as:

• meal preparation
• house cleaning
• shopping
• transport to and from medical appointments
• child care

Websites such as Gather my Crew can be helpful when coordinating offers of help.

Check for financial assistance through government organisations or the Cancer Council. Ask the social worker on the person's team who you should contact for support, information and advice.

What is respite care?

Respite care is when someone else takes over the care of the person you usually look after. Respite care can happen at home, in a residential facility, hospital or hospice. It may be for short or long periods.

Being a carer can be stressful and difficult. Respite services allow you to take a break and look after yourself.

What is palliative care?

Palliative care is supportive care that allows a person living with cancer to have the best possible quality of life. Palliative care does not aim to cure an illness but may happen alongside treatments for cancer.

Palliative care can start from the time of diagnosis to help manage symptoms and side effects from treatment.

Palliative care has an important role at the end of life, a time that can be especially difficult for carers who have spent a lot of time with the person they are caring for. To help with this, palliative care teams usually include counsellors to provide emotional support for you and the person with cancer.

Resources and support

For more information and support, visit the following organisations online:

• Cancer Council has a booklet about caring for someone with cancer.
• Carer Gateway is an Australia-wide network of carer service providers and has resources and support for carers.
• Carers Circle is Peter Mac's carer support group.
• Young Carers Network provides support for carers under 25 years old.

Languages other than English

• Support and resources are available for carers who speak many community languages.
• Carer Gateway gives advice and support for carers in different languages. You can phone them on 1800 422 737.

Information for Aboriginal and/or Torres Strait Islander peoples

• CarerHelp supports carers, including Aboriginal and/or Torres Strait Islander carers, people caring in the country and specific communities.
• Cancer Council has resources and support for Aboriginal and/or Torres Strait Islander peoples.