Caring for someone

Monday 1 December, 2014

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On this page: Every carer is different | Medical care | Practical support | Finances | Planning ahead | Emotional support | Communication with the wider circle | Key points


A carer provides unpaid care and support to a person who needs this assistance because of a disease such as cancer, a disability, mental illness or ageing. Anyone can be a carer, regardless of your age, sex, sexuality, profession or cultural background.

You may be a family member, friend or neighbour. You might not even see yourself as a carer, rather that you are simply helping out a person in need or that you are providing care as a natural extension of your relationship.

Every carer is different

For some, becoming a carer can be sudden; for others, it's a gradual process. However it happens, it may take some time to adjust to the role. Some carers are very willing to accept the increased responsibilities; others may be reluctant but feel pressured into accepting the role out of a sense of duty.

You may have to balance caring with other demands such as work, family or study. You may provide care for a short time or over months or years. Care may be needed for a few hours a week or on a 24-hour basis, and the level of care you provide may change over time. Sometimes a carer lives a long way from the person they are helping and coordinates care by phone, email or the internet.

Caring can be more than a one-person job. Family and friends are often willing to help, but don't know how – consider telling them what you need help with. You can also access a range of support services.

What carers do

The caring role varies depending on the situation and usually changes over time. It often involves a wide range of tasks and sometimes means that you need to learn a new range of skills.

Medical

  • Advocate for the person with cancer
  • Monitor and manage symptoms and treatment side effects
  • Keep records of appointments, test results and treatments
  • Navigate the health care system
  • Manage medicines
  • Work with the health care team

Practical

  • Look after the home, ensuring it is kept clean, safe and well maintained
  • Manage family responsibilities, such as care of children or parents
  • Provide transport to treatment
  • Help with personal care
  • Encourage exercise
  • Prepare meals
  • Do shopping

Emotional

  • Offer companionship
  • Be an active non-judgemental listener
  • Provide encouragement, comfort and understanding
  • Access professional support if needed
  • Communicate and negotiate with family and friends

Legal and financial

  • Talk to the person about planning ahead
  • Help the person see a lawyer to make legal arrangements for the future, such as wills and advance care directives
  • Arrange for the person to get professional advice to help them manage the financial impact of cancer

Medical care

As a carer, you're part of the health care team. You can work with the team to ensure you understand, and are included in, decisions about the care and treatment of the person you care for.

Most cancer treatment centres now have multidisciplinary teams (MDTs) made up of specialist doctors, nurses, and allied health professionals such as physiotherapists, dietitians, social workers and psychologists. See a description of the various roles.

The MDT will work together closely to manage the care of the person with cancer and recommend the best treatment. They may also refer the person to other specialists for aspects of their care.

Making the most of a doctor's appointment

Before the visit

  • Write a list of all the questions you both have so you don't forget them during the actual appointment. You can call Cancer Council 13 11 20 if you need information or help working out the questions to ask, or see Cancer Council's question checklists.
  • Work out your most pressing questions as time may be limited. Ask for a longer appointment if you have a lot of questions.
  • Do some research, starting with Cancer Council's information booklets or your local Cancer Council website, so you can ask informed questions. See more information sources.
  • Make a list of all the medicines being taken, including any vitamin supplements and complementary therapies. Note the dose and any side effects.
  • Check with the doctor's receptionist about what you need to bring, e.g. test results, scans, blood tests. Record any recent changes in the person's condition or symptoms so you can tell the doctor about them.

During the visit

  • Make notes or ask the doctor if you can record the discussion (many mobile phones have a recording function).
  • Write down any specific instructions.
  • Check who to contact if you are worried about any changes and ask for an after-hours number.
  • Clarify anything you don't understand.
  • Ask the doctor if they can give you printed material or tell you where to find more information, or call Cancer Council 13 11 20.
  • Look over the questions you brought along to check that they have all been answered.

After the visit

  • Review your notes.
  • Record the next appointment in a diary or calendar. all the doctor for test results, if appropriate.
  • Contact the doctor about changes in the condition or symptoms.
  • Discuss the visit with the person you are caring for.

The person you are caring for needs to give written consent for the treatment team to talk with you about their care. This consent and your contact details should be formally recorded in their case file.

Understanding the multidisciplinary team (MDT)

The MDT is there to support the person with cancer and also their carers, but dealing with health professionals can be intimidating, especially if it's something new for you. You may feel overwhelmed by all the new information or working out who to talk to about different issues. Try keeping a notebook to record which members of the MDT are responsible for what area of care. You might need to make the initial contact with them if it doesn't happen automatically. Having a key contact person in the MDT, such as a cancer care coordinator, can help you feel more comfortable.

Health professionals you might see   Role
general practitioner (GP) assists you with treatment decisions and works with specialists to provide ongoing care
surgeon* treats cancer by operating to remove tumours and performs some biopsies
medical oncologist* treats cancer with drug therapies such as chemotherapy, targeted therapy and immunotherapy (systemic treatment)
radiation oncologist* treats cancer by prescribing and coordinating the course of radiotherapy
haematologist* diagnoses and treats diseases of the bone marrow, blood and lymphatic system
cancer care coordinator coordinates care, liaises with other members of the MDT, and supports the patient and family
other coordinator not everyone sees a cancer care coordinator, but a clinical nurse consultant (CNC) or clinical nurse specialist (CNS) may also coordinate care
nurses administer drugs and provide care, information and support throughout treatment
dietitian recommends an eating plan to follow during treatment and recovery
physiotherapist helps with restoring movement and mobility, and preventing further injury
occupational therapist assesses changes needed to the home and suggests equipment to help with daily activities, improve quality of life and manage fatigue
social worker links patients and families to support services and helps with emotional or practical issues
counsellor, psychologist provide emotional support and new strategies to cope with the situation and deal with difficulties
spiritual care practitioner (pastoral carer) helps people work through spiritual matters

* Specialist doctor

Staying organised

Many carers talk about how complicated and time-consuming applications and paperwork can be. The social worker at the treatment centre can offer support with this aspect of your role.

Setting up your own system for paperwork can reduce stress. Use a folder, expanding file or filing cabinet to organise bills, receipts and letters from health professionals. Keep a record of all treatments and test results, and take it with you to appointments.

Paper records can still work well, but if you want to, you can create a My Health Record online. This means the person's important health care information is in one place and can be seen by their health professionals with their permission. There are also apps available through the App Store or Google Play that allow you to carry medical records on your smartphone. You can connect some of these apps to your My Health Record.

Managing medicines

The person with cancer may be taking non-prescription and prescription medicines. Knowing the answers to the following questions can help save time and confusion.

  • What are the names of the drugs and what are they for?
  • How much should be given and when?
  • How should the drugs be given (with or without food, etc.)?
  • Is there anything, such as alcohol or driving, that should be
  • avoided while taking the medicines?
  • Do the drugs interact with other drugs or vitamin supplements
  • or any other over-the-counter medicines?
  • Are there any possible side effects? What should I do if the person experiences side effects?
  • How long will the medicines be needed?
  • What should I do if a dose is missed?
  • When is the use-by date, and where can you find it on the medicine packaging?
  • How should the drugs be stored?

Help from the pharmacist

The pharmacist can provide a written list of all the person's medicines and when they should be taken, and/or can prepare a blister pack (e.g. Webster-pak) that arranges all the doses that need to be taken throughout the week. The pharmacist can also keep the person's prescriptions on file to make it easy to get repeats made up.

The medicines list

A medicines list can help you keep track of any medicines. It can also help health professionals understand which ones are being used – especially important in an emergency.

You can create your own list on paper or on a computer. You can also download the MedicineWise app from the App Store or Google Play onto your smartphone. This lets you scan the barcode on packaging to add a medicine to the app, record dosages, and set alarms to remind you to give each medicine at the right time.

To find out more about medicines, visit healthdirect.gov.au/medicines or call Medicines Line on 1300 633 424.

Carers in Australia

About 12% of Australians are unpaid family carers who provide care to someone with a disability or illness. 1 These carers make a valuable contribution to the community.

The Carer Recognition Act 2010 (Commonwealth) states that carers should have:

  • recognition and respect
  • access to appropriate information that makes it easier to get support
  • economic security and the opportunity to do paid work
  • access to appropriate services
  • the skills to do their role and the opportunity to have formal education and training
  • improved wellbeing and health, and the capacity to participate in community life.

Each state and territory government has also passed their own Acts and policies.

Applying for a PBS Safety Net card

Through the Pharmaceutical Benefits Scheme (PBS), the Australian Government subsidises the cost of many medicines. In addition, you can apply for the PBS Safety Net card once you have spent a certain amount on medicines during the calendar year.

You can track what you spend on PBS medicines on a Prescription Record Form (available from pharmacists). If you use the same pharmacist, you can ask them to keep a computer record instead. Once you've spent the threshold amount, your pharmacist can give you a Safety Net card and your PBS medicines will then be cheaper or free for the rest of that year. To find out more, call 132 290 or go to humanservices.gov.au and search for "PBS safety net".

Monitoring symptoms and side effects

Cancer itself can cause a range of symptoms, and cancer treatments often cause side effects. Common symptoms and side effects include:

  • pain
  • nausea, vomiting and loss of appetite
  • breathlessness
  • fatigue.

The information below offers some tips for helping someone manage these issues. You can call Cancer Council 13 11 20 or visit your local Cancer Council website to find out more about these and other common issues experienced by people with cancer. However, it's always important to let your treatment team know if symptoms and side effects become difficult to manage – they will often be able to offer you medicines and other treatments that can help.

The treatment team will let you know which side effects need to be closely monitored and when you need to contact them. Some issues that require urgent medical attention include:

  • a temperature of 38℃ or above
  • persistent or severe nausea or vomiting
  • redness or swelling around the site of an injection
  • chills with shaking or shivering
  • severe abdominal pain, constipation or diarrhoea
  • unusual bleeding (e.g. nose bleeding for over 30 minutes)
  • any serious unexpected side effects or sudden deterioration in the person's health.

Managing common symptoms and side effects

Pain

  • Encourage the person to take medicine as prescribed to keep on top of the pain, and contact your treatment team if the pain is hard to manage. It may take time to find the right pain medicine.
  • Use a pain scale to help you understand the intensity of the pain and the need for extra doses of pain medicine.
  • Keep a diary of pain levels and symptoms, and let the treatment team know how the medicine is working.
  • Try relieving pain and discomfort with hot water bottles or heat packs (but be sure to check the temperature first), ice packs or gentle massage.
  • Call Cancer Council 13 11 20 and ask for a free copy of the booklet Overcoming Cancer Pain, or download a digital version from your local Cancer Council website (see back cover).

Nausea and loss of appetite

  • Offer the person's favourite or well-tolerated foods often. You usually don't have to follow a strict diet during cancer treatment, though you should follow the advice of your health professionals.
  • Provide nutritious snacks throughout the day.
  • Make meals a time when you can sit together and talk.
  • If the person you care for is losing weight or feels too nauseous to eat, talk to your doctor, dietitian or pharmacist about dietary supplements.
  • Encourage the person you are caring for to ask their doctor for different anti-nausea medicines until they find one that works well for them.

Breathlessness

  • Use a fan to direct a cool stream of air across the person's face.
  • Set up a pillow on a table so the person can lean forward with an arm crossed over the pillow – this allows their breathing muscles to relax.
  • Maintain a calm atmosphere where possible as anxiety can make breathlessness worse.
  • Play a relaxation recording to help the person control anxiety that contributes to breathlessness. Your local Cancer Council may have a free relaxation recording on its website or available as a CD.
  • Talk to the treatment team about breathing exercises, equipment and treatments to manage breathlessness.

Fatigue

  • Help the person to work out small, manageable goals for the day, and encourage them to rest before they become too tired.
  • Encourage the person to say no to things they really don't feel like doing.
  • Find ways for the person to do some gentle physical activity every day – research shows that exercise can reduce fatigue. Talk to the treatment team about what sort of exercise would be suitable. Even a walk around the garden can boost energy levels, and the person may feel more motivated if you offer to go with them.
  • Establish a regular routine before bed and set up a calm sleeping environment. Ensure the room is dark, quiet and a comfortable temperature. Soothing music helps some people drift off.

Practical support

Carers often provide practical care. This can include doing household chores, preparing meals and providing transport. If the person you care for has difficulty moving around because of the cancer or effects of treatment, you may have to make some changes to the home.

Preparing meals

Treatment can weaken the body's immune system, so it is important to follow good hygiene and food safety practices. Wash your hands before preparing food and take special care when handling raw meat, fish and chicken.

You may notice the person you care for is experiencing changes in appetite or difficulties chewing and swallowing. They may be experiencing nausea (with or without vomiting), or they may have mouth or throat sores that make it painful to eat. Cancer treatment can also affect the sense of taste and smell.

At times, the person may not be able to tolerate even their favourite foods. While you probably want them to eat well to stay strong during treatment, becoming overly stressed about their lack of appetite can increase their anxiety, so gentle encouragement is best. Talk to the treatment team if you're worried about weight loss.

Family and friends often offer to ease your load by preparing meals. Let them know what types of food to prepare, and why hygiene and food safety are especially important at this time.

Nausea and poor appetite can last for several months after treatment ends. A dietitian, doctor or nurse can provide advice on a suitable eating plan and medicines that can help manage side effects such as nausea or a sore mouth.

For tips and recipes, see Cancer Council's Nutrition and Cancer booklet – call 13 11 20 for a free copy or find it on your local Cancer Council website. You can also download two fact sheets: Understanding Taste and Smell Changes and Mouth Health and Cancer Treatment.

Managing the home environment

If the person you are caring for becomes unwell or frail during treatment, you may need to make the home safer for them.

Simple measures include rearranging furniture to make access easier, and removing loose rugs and other tripping hazards. Talk to the occupational therapist on the treatment team about other changes you can make – for example, putting handrails on the stairs or in the bathroom, or using a chair in the shower. If you need to lift the person you're caring for, or help them get into or out of bed or a chair, ask a nurse or physiotherapist to show you how to do so safely. They may suggest you hire or buy aids to make lifting easier.

You can ask family and friends for assistance with housework or arrange help through community services. This will free up time for you to spend on caring or other responsibilities. Talk to the nurse or social worker on the treatment team or get in touch with Cancer Council 13 11 20 to find out how to access this support.

Providing personal care

A person may need help with bathing, toileting and dressing at various times during and after the course of treatment.

Some carers feel uncomfortable doing this care themselves, particularly for their parents or adult children. If this is the case for you, you can arrange visits from care workers who can help with these tasks. Talk to the nurse or social worker on your treatment team or call Cancer Council 13 11 20 to find out how to access this support.

Finances

Caring for someone with cancer can cause financial concerns. There may be a drop in your household income if you or the person you are caring for needs to reduce work hours or stop working. There may also be new expenses such as transport, medicines, scans, tests and equipment.

Speak to a social worker or call Cancer Council 13 11 20 to find out what financial assistance is available to you. Information about financial assistance is also available from your local Carers Association – you can contact them on 1800 242 636.

The Department of Human Services offers a free, confidential Financial Information Service that provides education and information on financial issues. You can call 132 300 to speak to someone about financial issues or to find out about financial information seminars in your area.

For professional advice, you need to speak to a financial adviser (to help you manage your assets, including superannuation) or a financial counsellor (to help you set up a budget and manage debt). Cancer Council may be able to provide some financial assistance and can also refer you for financial advice through our Legal and Financial Referral Service – call 13 11 20 to find out more. You can also request a copy of Cancer and Your Finances, or find it on your local Cancer Council website.

Extra payments

Centrelink payments

The Department of Human Services (Centrelink) has various schemes for carers. The Carer Payment is for carers who provide full-time daily care in the home of the sick person. This payment is incomeand asset-tested. The Carer Allowance is for carers who provide a significant amount of assistance, either in their own home or in the home of the sick person. The allowance is not means-tested and can be paid even if you are working.

Travel payments

If the person travels for cancer treatment that isn't available in their local area, they may be able to get some of their travel costs back. Eligibility for these patient assistance travel schemes (PATS) varies from state to state. Ask your social worker for more details, or call Cancer Council 13 11 20.

Superannuation

In some cases, you or the person you are caring for may be able to access superannuation early. It is vital to get financial advice as accessing this money may have tax implications and could affect your retirement and insurance policies.

Long-distance caring

Living away from the person with cancer can be difficult. You may feel guilty for not being closer, and you may feel you are the last one to know about treatment and care. This can be frustrating when you want to stay involved.

However, there are many things you can do. Living away from the everyday care may give you a different perspective on the situation. In some cases, this could help you solve problems or coordinate care more effectively.

  • Create a local support network. You could start by reaching out to relatives and friends who can visit the person regularly. You can also talk to the hospital social worker about arranging volunteer and paid care workers, or call Cancer Council 13 11 20 to find out what support is available in the person's area.
  • Consider using websites such as lovlist.org and caringbridge.org to coordinate offers of help.
  • Write a contact list of the health professionals who are looking after the person with cancer, and keep this list handy in case you need to contact them.
  • Use technology to stay in touch. Options include email, blogging, text messaging, Skype, Facebook and video conferencing.
  • Ask the person if their doctor will allow them to record consultations so you can hear what was discussed.
  • Look for the best possible telephone (landline and/or mobile) plan to reduce costs.
  • Create an Emergency Care Plan (see below) and give copies to the carer and emergency contacts you have nominated.

Planning ahead

When someone has cancer, it can be difficult to talk about planning for the future, especially if you're feeling optimistic or are uncertain about the possible outcomes. However, it is never too early to think about how you will manage if the situation changes. Knowing plans are in place can actually ease worries and allow you both to focus more fully on the present.

Emergency Care Plan

An Emergency Care Plan is a document that provides direction and instructions to allow others to provide the care that you would usually provide. Think about the best people to fulfil your carer's role. Discuss the duties with them and ask for their commitment, then give them and your doctors a copy of the plan. Let the person you're caring for know about the alternative arrangements. It is a good idea to carry a Carer Emergency Card in your wallet. This tells people that you are a carer and who to contact in an emergency.

The Department of Health website has a sample Emergency Care Plan on their website at health.gov.au. You can also get print copies of the plan and card by calling the Commonwealth Respite and Carelink Centre on 1800 052 222.

Advance care planning

It can be a good idea for a person to plan for their future care and to discuss their wishes with family, friends and the treatment team. This process is called advance care planning and can involve preparing various legal documents.

Emotional support

An important part of the carer's role can be to provide emotional support to the person with cancer.

You might find it challenging to talk to the person about their cancer diagnosis and treatment. This may be because you:

  • fear saying the wrong thing
  • don't know what to say or how to respond
  • feel you shouldn't talk about the cancer
  • don't want to say something upsetting
  • feel you have to be supportive and strong for the person
  • with cancer, and worry you could break down.

Not everyone finds talking about what is happening helpful, and it's important to respect this, but try to find ways to support each other. You can't change the diagnosis, but listening to each other's concerns can help.

During your role as a carer, there may be occasions when you don't agree with the person you are caring for. Try to remember that it's natural to have disagreements from time to time, especially when you're both under stress. Although dealing with conflict can be challenging, it can also bring you closer together and help you understand each other's point of view.

While you may be the primary source of emotional support, keep in mind that there may be family members, friends or health professionals who are able to contribute emotional support in different but valuable ways.

Ways to be a good listener

  • Sit somewhere private where you will not be interrupted.
  • Signal that you are there for as long as needed, e.g. switch off your mobile phone.
  • Maintain eye contact.
  • Listen carefully to what may be behind the words. Try not to think about something else or plan what you will say next.
  • Ask open questions to help you understand how they are feeling.
  • Avoid interrupting or changing the subject.
  • Allow the person to be sad, upset or cry. You don't have to keep them happy all the time.
  • Check your understanding of what they've said by repeating information or paraphrasing.
  • Wait to be asked before giving advice.
  • Respond to humour.
  • Avoid filling the gaps in conversation. Silence can allow you both some time to gather your thoughts.

Ways to resolve conflict

  • Let the other person know that you care about them and want to resolve your differences.
  • Try to stay calm and talk through the issues. Hear each other out and work towards making a decision together. Sometimes people disagree because there has been a misunderstanding.
  • Compare your expectations. For example, some people with advanced cancer choose to stop having treatment. You may find this hard to accept if you feel they are giving up and you want them to try other options.
  • Choose your battles – it may help to focus your energy on the issues that really matter.
  • If emotions become heated, call time out and arrange to talk later when you are both calmer.
  • Consider taking a break and arranging other care for a time.
  • Ask your GP or treatment team for a referral to a social worker, counsellor or psychologist who can help you resolve the conflict.

Communication with the wider circle

Many carers say they find it time-consuming and tiring to keep family and friends up to date on the condition of the person with cancer. Some carers find it stressful dealing with other people's reactions to the updates. It's also important to ask the person you are caring for how much information they would like you to share.

There are a number of ways to let people know what is happening without having to repeat yourself over and over again:

  • Leave a message on your answering machine. You could say something like: "Bill is doing okay with the chemo. He's mainly feeling tired. Thanks for your concern." This will cut down on the time needed to answer or return calls.
  • Send out updates via group text messages or emails. You may want to include a statement such as: "We don't have time to reply to everyone individually, but we are reading your messages and appreciate your support."
  • Start an online diary, blog, or Facebook or other social media group to share news and coordinate offers of help. You can set up a free, protected website at caringbridge.org.
  • Ask a family member or friend to update others.

Explain to family and friends how you'll keep them up to date. It's okay to let them know that it is stressful and time-consuming responding to a range of inquiries.

If you need to explain the situation to children, read the Talking to Kids About Cancer booklet. Call Cancer Council 13 11 20 for a free copy, or find it on your local Cancer Council website.

Key points

  • Your caring role will depend on the needs of the person you are caring for and also on what you are able to do.
  • Carers often need to liaise with health professionals. They may help the person with cancer prepare for medical appointments.
  • Your doctor or pharmacist can give you advice about managing medicines, or you can use a paper-based or electronic medicines list.
  • Carers often have a key role in monitoring and managing symptoms and side effects. Talk to the treatment team about how you can help ease symptoms and side effects at home, and when you need to contact them.
  • Preparing meals can be an important part of someone's care, but it is important to understand that nausea and loss of appetite can last for many months after the end of treatment.
  • An occupational therapist can advise you on changes to your home to ensure it's a safe environment.
  • Carers often help manage finances. You may be eligible for financial assistance through the Department of Human Services (Centrelink).
  • An important part of being a carer can be offering emotional support, but it's also natural to have some disagreements. Good communication can often help resolve conflict.
  • Consider using technology, such as blogging or social media, to update friends and family about the condition of the person with cancer. A friend or family member can also help with this.

Reviewed by: Tina Chivende, Social Worker, Cancer Psychosocial Service, Canberra Region Cancer Centre, ACT; Gabrielle Asprey, Telephone Support Group Facilitator, Cancer Council NSW; Dr Ben Britton, Senior Clinical and Health Psychologist, Calvary Mater Newcastle and John Hunter Hospital, and Conjoint Lecturer, School of Medicine and Public Health, University of Newcastle, NSW; Valmai Goodwin, Psychologist, Cancer Counselling Service, Cancer Council QLD; Karen Hall, 13 11 20 Consultant, Cancer Council SA; Zoe Mitchell, Senior Social Worker, Palliative Care, Fiona Stanley Hospital, WA; Amber Rose, Consumer; Carolina Simpson, Policy and Development Officer, Carers NSW. We also thank the health professionals, consumers and editorial teams who have worked on previous editions of this title.

1. Australian Bureau of Statistics, 4430.0 Disability, Ageing and Carers, Australia: Summary of Findings, 2015. Available from: abs.gov.au/ausstats/abs@.nsf/mf/4430.0.

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