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Your role as a carer

A carer provides unpaid care and support to a person who needs 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.

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.

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.

Making the most of a doctor’s appointment:

  • Write a list of all the questions you both have so you don’t forget them;
  • Record any recent changes in the person’s condition or symptoms;
  • Check who to contact if you are worried about any changes and ask for an after-hours number; and
  • Clarify anything you don’t understand.

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.

Many carers talk about how complicated and time-consuming applications and paperwork can be. Setting up your own system for paperwork can reduce stress. Keep a record of all treatments and test results and take it with you to appointments.

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.)?
  • 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 a dose is missed?

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.

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; and
  • fatigue.

It’s always important to let your treatment team know if symptoms and side effects become difficult to manage.

Practical support

Resources and fact sheets

Carers often provide practical care. This can include doing household chores, preparing meals and providing transport. Cancer Council has a range of free resources designed to help people affected by cancer.

Learn more

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.

Nausea and poor appetite can last for several months after treatment ends.

For tips and recipes, see Cancer Council’s Nutrition and Cancer, Understanding Taste and Smell Changes and Mouth Health and Cancer Treatment

If the person you are caring for becomes unwell or frail during treatment, you may need to make the home safer for them, for example, putting handrails on the stairs or in the bathroom, or using a chair in the shower.

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

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.

For professional advice, you need to speak to a financial adviser or a financial counsellor.

Cancer Council may be able to provide some financial assistance or refer you for financial advice through our Legal and Financial Referral Service—call 13 11 20 to find out more.

Speak to a social worker or call 13 11 20 to find out what financial assistance is available to you or to be referred to Legal and Financial Referral Service.

Other useful information is available from:

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.

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.

It’s also important to ask the person you are caring for how much information they would like you to share.

It’s common for carers to experience a range of feelings about their new role and responsibilities, and many describe it as an emotional roller-coaster. Often these feelings are similar to those experienced by the person with cancer—some studies show that carers can have even higher levels of distress.

Many carers find it reassuring to know that their feelings are a normal reaction to the demands of the role.

While caring can be challenging at times, many carers say that it can also be a rewarding experience.

Although everyone is different, the following feelings are experienced by most carers at some point.

  • Worry—caring for someone with cancer can be frightening and overwhelming.
  • Anger—you may feel angry or frustrated for many reasons.
  • Stress—the demands, difficulties and limitations of looking after someone with cancer are often stressful.
  • Guilt—this is one of the most common emotions that carers experience.
  • Loneliness—it is easy to become isolated or feel lonely as a carer. You may feel too busy or guilty to socialise or maintain contact with friends and family.
  • Depression—research shows that depression is common among carers.
  • Loss and grief—many people associate loss and grief with dying. However, feelings of loss and grief can also happen after a diagnosis of cancer, you may feel that your relationship with the person you are caring for has changed. It’s natural to miss activities you used to enjoy.

Caring for yourself

Many carers say that providing care can affect their health and wellbeing, relationships, career and finances.

Caring can be rewarding, but it may also be difficult at times, both physically and emotionally. The responsibility of attending to the needs of the person you are caring for may mean that you neglect your own needs. Some carers have said they felt like they lost their identity when they started the caring role. It may feel as though your career, interests and health are no longer important or have to take second priority.

It’s important to think about yourself for your own sake, but if your natural inclination is to focus completely on the person with cancer, remember that looking after yourself will also help you provide better quality of care over a longer period of time.

As carers are busy looking after someone else, they can find it difficult to find time to look after their own health and wellbeing.

Maintaining fitness and eating well can help carers cope with the physical and emotional demands of caring.

Asking for and accepting assistance is sometimes difficult. However, if you seem to be coping, family and friends may not realise you need help. Asking for help is not a sign of failure, and it may relieve some pressure.

How to cope

Caring for someone with cancer is not always easy or satisfying. Many carers say they feel overburdened and resentful.

The following strategies may help you cope:

  • Focus on the value of caring—acknowledging the rewards of caring may help you feel better.
  • Set boundaries and limits—outline what you are comfortable helping with, the level of workload you can manage, and what your own needs are.
  • Don’t expect to be perfect—sometimes you may feel like you could have done something differently or handled a situation better. Allow yourself not to be perfect.
  • Take time for yourself—try to stay involved in activities you enjoy. It’s okay to find pleasure in life, despite the difficulties, and to want to stay connected to and talk about things other than cancer. Even short interludes may give you the chance to do something for yourself.
  • Deal with uncertainty—when the person you care for is having treatment, life may seem less predictable and it may be hard to plan ahead. Carers often find this uncertainty stressful and feel that their life is in limbo. You may find it easier to cope if you focus on those things you can control right now.

It may be that the physical demands are becoming too much, particularly if you are older or have your own health issues. You could also find the role is taking an emotional toll.

Perhaps you know you need support but don’t want to disappoint the person you’re caring for. Try talking to your GP or the social worker at the treatment centre or calling Cancer Council 13 11 20.

You might also find it helpful to see a counsellor, either in person or via phone, email or Skype. The counsellor may help you see ways to make caring more manageable. Your GP or Cancer Council can refer you to a counsellor.

You can also access the National Carer Counselling Program by calling 1800 242 636.

Respite care allows carers to have a break. It may be provided at home, in a residential care facility (such as an aged care facility) and, in some cases, in a hospital or palliative care unit (hospice). It can be for a couple of hours, overnight or a few days.

You can access respite care for any reason, including to:

  • take time out to access health care for yourself;
  • visit friends or other family members;
  • catch up on some sleep at home;
  • run errands, such as grocery shopping; and
  • attend events, such as a school assembly or a wedding.

Some carers don’t access respite care because they feel guilty or anxious about leaving the person they are caring for. However, the service exists because caring can be difficult and may affect your wellbeing. By taking a break, you will probably find that you can be more effective in your caring role. The person you are caring for can also have a break from you and interact with other people.

Commonwealth Respite and Carelink Centres, located across Australia, provide information on local carer respite and support services. Call 1800 052 222 during business hours, or 1800 059 059 for emergency respite support outside business hours.

Many people who care for someone with cancer are also employed.

They may work full-time, part-time, casually or have their own business. Working carers often have to balance the needs of the person they are caring for with the demands of the workplace. If the person with cancer does not work and is dependent on you, there may be financial pressure on you to continue earning an income.

Your decision to continue working will probably depend on a number of factors, including:

  • how unwell the person with cancer is;
  • what your caring and work duties involve;
  • the amount of help or respite care available;
  • your finances; and
  • what will give you peace of mind.

Before making changes to your working arrangements, talk over your thoughts with your employer, family and friends. They may be able to support you with flexible working arrangements.

To find out more about working while caring for someone, visit workingcarers.org.au or carersnsw.org.au/advice. You can also contact the Carers Association in your state or territory for support and counselling. Visit carersaustralia.com.au for links to the relevant website or call 1800 242 636. Cancer Council’s booklets include Cancer, Work and You and Cancer Care and Your Rights. Call 13 11 20 for free copies or look for them on your local Cancer Council website.

How relationships can change

Taking on a caring role often changes relationships. For many carers, a cancer diagnosis affects the established roles they have with their partner, parent, friend, dependent or adult child or sibling, and this can be a challenging adjustment.

The effect of cancer on a relationship varies, and the impact often depends on what your relationship was like before the cancer diagnosis. Some carers find the opportunity to care for someone strengthens the relationship with the person they are looking after.

For others, particularly those who had a strained relationship before the diagnosis, the pressure of a cancer diagnosis and treatment and the demands of caring add further tension. In this case, you may find it best to share the caring role with other people, so you are not the full-time carer.

  • I might need to take on new responsibilities that will reverse our roles.
  • If I’m doing all the caring, they may feel like they’ve lost their independence.
  • I may feel like it would be selfish to talk about my needs when they are having to go through cancer treatment.
  • The intimacy we shared might be replaced by the caring role.
  • We might need to re-evaluate our priorities and set new goals
  • Talk about the changes to avoid misunderstandings. Discuss ways to meet each other’s needs.
  • Allow time to get used to the changes, particularly if roles have reversed.
  • Set boundaries to maintain independence and allow both of you to feel in control.
  • Arrange home help if you feel uncomfortable doing the bathing and dressing.
  • Give the person you’re caring for the chance to do things for themselves.
  • Use touch to show you care

If you are caring for a partner, you may find the cancer and its treatment affects your sexual relationship. This will depend on the type of cancer, the treatment and its side effects.

  • Tiredness can make people lose interest in sex during and after treatment. This is called a lowered libido.
  • Cancer treatments, medicines and pain can also reduce libido and may affect someone’s physical ability to have sex.
  • A person’s body image may change after treatment, making them feel self-conscious and embarrassed.
  • The emotional strain of cancer or caring may preoccupy you and cause you to lose interest in sex.
  • Many people worry that physical intimacy might be painful.
  • You might find it hard to switch from being patient and carer back to being sexual partners.

Lesbian, gay, bisexual, transgender or intersex (LGBTI) people may face specific challenges as carers. They may worry about the family of their partner or friend accepting them or wonder if support services are LGBTI-friendly.

You can ask your local Carers Association what support is available for LGBTI carers in your area. Another option is to visit qlife.org.au. QLife is a national counselling and referral service for LGBTI people.

Caring for someone with advanced cancer

A diagnosis of advanced cancer means the cancer is unlikely to be cured. Caring for someone with advanced cancer can feel overwhelming at first. You may both be trying to come to terms with the diagnosis and experiencing a range of strong emotions such as fear, sadness and grief.

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. If you need support, talk to your GP or the hospital social worker, or call Cancer Council 13 11 20.

As the disease progresses, the person’s needs will change and the demands on you as a carer are likely to increase. Some people live with advanced cancer for many years, so there may not be much difference in your caring role immediately. For others, the disease progresses quickly and your responsibilities may become more complex almost overnight.

The doctors may give a general indication of the person’s life expectancy. This is known as the prognosis and it is likely to sound a bit vague, such as months to many months, weeks to months, or days to weeks. The actual time could be shorter or longer, because each individual responds differently to care.

Not everyone wants to know their prognosis. If the person you are caring for prefers not to know, you may still want to get some indication to help you plan ahead. You can do so if the person gives their medical team permission to speak to you alone.

Caring for someone with advanced cancer can be physically and emotionally demanding. Carers often put their own needs aside and focus all their energy on supporting the person with cancer. This can be hard to keep up over what may be months or years of caring.

Now more than ever, it is important to look after your own wellbeing. Ask for and accept help and find ways to care for yourself. Even taking five minutes to do something you enjoy or to still your mind can mean you cope better.

Stress or distress that lasts a long time can lead to carer burnout. This can show in physical and emotional ways. If you are experiencing mood swings, irritability, sleep problems, changes in appetite, overwhelming fatigue or other signs of stress for more than two weeks, or if you are relying on alcohol or other drugs, talk to your GP or the social worker on the palliative care team.

Palliative care

As a carer, you can be supported in your role by palliative care. This involves a range of services offered by nurses, doctors and allied health professionals, as well as volunteers.

It is a team approach that addresses the person’s physical, practical, emotional, spiritual and social needs. Palliative care aims to help people with a life-limiting illness to live as fully and comfortably as possible. It doesn’t mean giving up hope—in fact, it can improve quality of life at any stage of advanced cancer and can be given alongside other cancer treatments.

You can ask your treatment team for a referral to palliative care as soon as advanced cancer is diagnosed. Even if you don’t want to access the services right away, it can be reassuring to understand what support is available. Many people say that they wish they had been referred to palliative care earlier.

Palliative care may be coordinated by a GP or community nurse or, if the person’s needs are complex, by a specialist palliative care team. It can be provided at home supported by a community palliative care service, in hospital, in a palliative care unit (hospice) or at a residential aged care facility (formerly called a nursing home).

The palliative care team will help you and the person you’re caring for work out the best place for their care. Sometimes people spend a short time in hospital or in a palliative care unit to help get their symptoms under control and then return home again.

Carers are considered part of the palliative care team. If you have been providing most of the person’s care, it can be difficult to let other people take over some tasks. However, it is important to realise that 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.

If your caring role ends

As the person you’re caring for starts to get better and tries to resume their usual activities, you could feel a bit lost or not needed anymore. They may even appear to have forgotten how much time and effort you gave. This can be hurtful, but they probably don’t realise how you are feeling.

You may be surprised that the person who has had cancer does not seem happy or relieved that they have been given good news. However, this can actually be a difficult time emotionally, and cancer survivors sometimes experience depression as they adjust to the “new normal”. It is important to communicate openly about how you are both feeling.

Carers often expect to slip back into day-to-day life as it was before they took on the caring role, but this may not be straightforward. You might feel you are still waiting for the next setback. Your life may also have changed. Going back to work or resuming other responsibilities can be overwhelming. Do things at your own pace and give yourself time to adjust. You might be able to return to work part-time or take on fewer responsibilities.

Talking about your feelings with someone you trust can help. Studies show that caring often brings positive changes in life philosophy, relationships and personal growth. However, not everyone finds the caring experience to be rewarding and life-changing. You may need time to reflect on the experience and work out what it has meant to you.

Support for carers

Although carers may have similar responsibilities and need support at any stage of cancer, their workload usually intensifies if the disease progresses. Most people with life-limiting cancer spend almost all their last year at home, and their carers need additional support with many aspects of the role.

The following section outline common issues you may face as you care for someone and lists who can help.

Managing symptoms
Palliative care specialist, palliative care nurse, pain specialist, cancer specialists, GP, community nurse, physiotherapist

Setting up the home
Occupational therapist

Nutritional support
Dietitian, speech pathologist

Providing personal care
Community care workers (ask your treatment team or GP for a referral, or contact My Aged Care.

Organising finances
Social worker, Cancer Council Financial Referral Service on 13 11 20, financial counsellor, financial adviser

Making legal arrangements
Social worker, Cancer Council Legal Referral Service on 13 11 20, Advance Care Planning Advisory Service on 1300 208 582

Dealing with the emotional impact
GP, social worker, psychologist, counsellor or psychiatrist, support groups , Cancer Council 13 11 20, National Carer Counselling Program 1800 242 636, beyondblue 1300 22 4636, Lifeline 13 11 14

Communicating with family and friends
Social worker, Cancer Council 13 11 20, particular family members or friends who can relay updates, social media platforms such as Facebook

Exploring the meaning of the person’s life
Social worker, psychologist or counsellor (ask your treatment team or GP for a referral), spiritual care practitioner (also called a pastoral carer, usually available through your treatment centre), religious leader

Maintaining hope
Social worker, psychologist or counsellor, spiritual care practitioner (pastoral carer), family and friends[LR1]

 

Advanced care planning

The process of advance care planning begins with a discussion about the person’s wishes for their future health care.

If the person hasn’t already done so, it is a good idea to make legal arrangements now to ensure their wishes are recorded.

These can include

  • Advance care directive
  • A will
  • Appointing a substitute decision-maker (e.g. enduring power of attorney, enduring power of guardianship, appointment of enduring guardian)

Care at the end of life

It can be confronting to talk about death and dying, but it is important to explore the options for where the person may die and to understand their wishes. Your wishes as the carer also need to be considered. Talking about the options early while the person is still well can help avoid distress and regrets or feelings of guilt later.

Many people say that they would like to die at home. Dying at home usually depends on having at least one carer available at all times. Carers may immediately feel committed to making sure this happens, or they may feel very daunted by the idea. Finding out more about the support available from the palliative care team and other services may help with your decisions and provide reassurance.

Not everyone wants to die at home, and some people change their minds as their situation changes. Depending on the circumstances, a person can be cared for at the end of life by health professionals in a hospital, a palliative care unit (hospice), or a residential aged care facility. Some carers feel guilty about handing over the everyday care to somebody else, but it can allow you to spend more time just being together.

If you wish, you can assist the staff with physical duties. For more information about the options at the end of life, call Cancer Council 13 11 20 or see our Facing End of Life booklet.

A life-limiting illness offers time to say goodbye. You can encourage the person with advanced cancer to share their feelings, and you can share your own in return. It is understandable that you might not know what to say or worry about saying the wrong thing. Ask the person if they would like to talk about how they are feeling. This can give you an idea of whether they are ready to talk about the situation—they may be avoiding the topic for fear of upsetting you.

Some people who are dying refuse to acknowledge it or may seem to be in denial. This might be because they prefer to focus on the present moment. If you find this upsetting, it may help to talk it over with the social worker on your treatment team or call Cancer Council 13 11 20.

You can ask the person with advanced cancer if they want to visit a special place or contact someone they’ve lost touch with. They may also appreciate help creating a legacy, such as documenting their life in some way, creating a memory box of keepsakes, or writing letters to family and friends. One option is to create an “emotional will”, a document that shares their thoughts with their family and friends.

You can download the Groundswell Project’s Emotional Will and Death Checklist from their website.

Some carers experience anticipatory grief. This is the grief you feel when you are expecting the death of someone close to you. You may feel sad, down and depressed or become anxious and concerned for your family member or friend. Or you may find yourself preparing for the death and beginning to think about what life might be like once they are gone. It is common to have thoughts such as: “How will it be when they are not here? How will I cope on my own?”

A long illness can give family and friends time to slowly get used to the person dying, to say what they want to say or to share memories.

Having time to grieve doesn’t necessarily make the loss of the person easier to cope with once they have died. Sometimes the experience of anticipating the death and spending a lot of time caring for the person actually makes you become closer to the person, and you feel intense grief when they die.

There are many services available to help with the practical and legal aspects of the person’s death. You can read more about these services in the Facing End of Life booklet – contact Cancer Council 13 11 20 or visit your local Cancer Council website. You can also talk to the social worker on the palliative care team.

After the person dies, you may feel a range of emotions, including:

  • numbness and shock, or a sense of disbelief, even if you thought you were prepared.
  • sadness.
  • relief that the person is no longer in pain.
  • shocked that you feel relieved to be free of the burden of caring and can now make plans for your future.
  • anger towards the doctors or the hospital, your god or the person for dying.
  • guilt about things you did or didn’t do, about not being there at the time of death, or about how you are feeling.

All these reactions are common. Feeling relief or guilt is not a sign that you didn’t care. These emotions may come and go and change in intensity over time. Support groups (face-to-face, telephone or online) or counselling can help you get through times when your grief seems overwhelming.