Who is a carer?

A carer is a person who gives assistance and support to people who need help with their daily activities because of age, illness or disability. They do not get paid for this role. People who have 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, such as providing companionship and encouragement
• practical support, such as providing transport or helping with shopping
• personal care, such as dressing, showering and feeding
• medical care, such as giving medicines and monitoring symptoms
• 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 carrying out the role of a carer. There are financial supports 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 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 general state of health

This means that caring for someone with cancer may involve a range of activities, from seeking information or resources and attending medical appointments, to providing practical daily assistance, such as 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 needs to be made voluntarily and by a person who is over 18 years who 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 or cancel the 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 with cancer are looked after by a medical team. As a carer, you may be the person that liaises with the team and prepares the person with cancer for their appointments. You may meet several different doctors, allied health professionals and social support staff.

There may be many new medical terms and information you need to understand, as well as many different services to learn about. The medical team is there to support the person with cancer and you as a carer. Be sure to ask questions and express your concerns during appointments.

There are many organisations, such as the Cancer Council, that can provide you with resources to understand any medical information you might receive, as well as offer you advice and support.

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

Remaining mobile is important, but cancer symptoms can make it more difficult. The medical team can help you support the person in your care to be mobile and reduce the chance of injury for you both.

An occupational therapist can give advice and recommend changes to your home, for example, equipment such as pull-bars, ramps, additional handrails, walkers and wheelchairs. A physiotherapist can help the person you care for, by providing safe, individualised exercise prescription before, during and after cancer treatment to help improve their movement.

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 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
• ensuring you have the necessary equipment and skills to attend to their personal needs (such as toileting, brushing teeth, bathing or nail care) in bed, or seeking help if you don't
• keeping up their proper nutrition
• changing their clothing and sheets for cleanliness and comfort

What emotional support is available for me?

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 and speak to your doctor for advice.

There are many online and telephone support services and support groups that you may find helpful, including:

• The Australian Government's Carer Gateway
• Peter Mac carer support group, Carer's Circle
• Young Carer's Network, for carers under age 25

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 due to illness, disability, or ageing. These are:

• 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 it stops you from working full-time.

If you are eligible for either of these payments 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 don't know how.

Consider asking for help with tasks such as:

• meal preparation
• house cleaning
• shopping
• transport to or from medical appointments
• childcare

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

You may also be eligible for financial assistance with some of these tasks through government organisations or the Cancer Council. You may find it helpful to ask the social worker on your person's medical team for more 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 be given at home, in a residential facility, a hospital or a hospice. It may be given 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 supportive care that allows a person with a cancer to have the best possible quality of life. Palliative care does not aim to cure an illness but may be given 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 end-of-life, a time that can be especially difficult for carers who have spent a lot of time with the person you are caring for. To help with this, palliative care teams usually include counsellors to provide emotional support to you and the person with cancer.

Watch this video from CarerHelp with Mark Boughey, a palliative care doctor, talking about caring in rural areas.

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.
• Carer's Circle is Peter Mac's carer support group.
• Young Carer's Network provides support for carers under age 25
• CarerHelp supports carers, including Aboriginal and/or Torres Strait Islander carers, people caring in the country and specific communities.
• Support and resources for carers that speak community languages is available.