Are you a carer?

Carers provide unpaid assistance and support to people who need help with their daily activities because of age, illness or disability. People who have cancer often need carers.

Carers may help in many different areas of life including:

• personal care, such as dressing, showering and feeding
• medical care, such as giving medicines and monitoring symptoms
• emotional support, such as providing companionship and encouragement
• practical support, such as providing transport or helping with shopping
• managing finances, such as paying bills
• legal matters, such as planning a will or an Advance Care Directive

Many people, especially those who care for close family members, may not be aware that they are carrying out the role of a carer. This can mean they miss out on the support services available to carers.

Does the stage of the cancer affect the care needed?

Caring may involve assisting in many different areas of life. The level and kind of care required by a person with cancer 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 anything from seeking information or resources and attending medical appointments, to providing practical daily assistance, such as with dressing and toileting.

What is an Advance Care Directive?

An Advance Care Directive is a formalised plan that details a person’s beliefs and treatment preferences. It can be used by carers if the person is unable to make treatment decisions for themselves in the future. This kind of directive needs to be made voluntarily and by a person who is over 18 and with the capacity to make decisions. In some Australian states, an Advance Care Directive may be legally binding.

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.

Visit Advance Care Planning Australia for more information.

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

As a carer, you may need access to a lot of medical information about the person you care for. Most people with cancer are looked after by a medical team that includes 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, so be sure to bring your questions and concerns to medical appointments. These might include how to manage troubling symptoms, or about the treatment plan.

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 for everyone, but it can be complicated by the extent of cancer symptoms.

If the person you are caring for has reduced mobility, you may need to learn how to help lift them and move them around safely. In some cases, you may also need to obtain special or additional equipment such as pull-bars, ramps, additional handrails, walkers, and wheelchairs.

Your medical team may include an occupational therapist who can give you detailed advice and resources about recommended house modifications or equipment hire/purchase services in your area. You can ensure the person you are caring for remains mobile without either them or you getting injured.

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:

• keeping their skin hydrated and clean
• changing their position frequently 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
• keeping up their proper nutrition
• changing clothing/sheets frequently

What emotional support is available for me?

Being a carer can be stressful and even overwhelming, so it’s important to make sure you look after your own emotional and mental wellbeing. You can seek support from your family and friends. You may also consider seeking professional help if you are struggling.

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 people who are caring full-time
• Carer Payment — available to eligible people who are providing extra daily care (not full-time)

People who are eligible for either of these payments may also receive the Carer Supplement, 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 but may also 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 outsourcing 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 the carer usually looks after. Respite care can be given at home, in a residential facility or in a hospital for short or long periods. Caring roles can be stressful and difficult; respite services allow carers to take a break and look after their own needs.

What is palliative care?

The aim of palliative care is to allow a person with a life-limiting illness to live as fully and comfortably as possible. Palliative care does not aim to cure an illness but may be given alongside treatments that are aimed at curing cancer (curative). The aim of palliative care is to minimise troubling symptoms and maximise the person’s quality of life. In some cases of advanced cancer with a poor prognosis, a person may decline curative treatment and choose to receive only palliative care.

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 they are caring for. To help with this, palliative care services usually include pastoral and spiritual care to provide emotional support to the person with cancer and their carer.

CarerHelp also has many valuable resources for those caring for someone with a life-limiting illness.

Resources and support

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

• Cancer Council — for information about cancer and support for people with cancer and their carers
• Counterpart — women supporting women with cancer
• Carer Gateway — an Australia-wide network of carer service providers
• Carer’s Circle — Peter Mac carer support group
• Young Carer’s Network — for carers under age 25
• CarerHelp — resources if you care for someone with a life-limiting illness