Caring for someone with advanced cancer

Sunday 1 December, 2013

Download PDF Order FREE booklet

On this page:  Common reactionsDealing with the changesPractical concernsEmotional and physical strain


Being a carer can be stressful. Try to look after yourself – give yourself some time out and share your worries and concerns with trusted friends or somebody neutral such as a counsellor or your doctor.

Common reactions

For many carers the most difficult part is thinking about the impact of the diagnosis on the person with cancer. You may be concerned about how they will be affected, if they will be in pain and feel sick, if they will become depressed or withdrawn, or if they will die. As well as having to manage your own reactions, you may also have to break the news to other family and friends. This can be extremely difficult and exhausting. If you need advice or support there are people you can contact, including your GP, hospital social worker, a palliative care service, a support group, hospital nurses, oncologist or Cancer Council on 13 11 20.

Putting on a brave face

Some carers feel like they have to be strong all the time and don’t want to add to the worries of the person with cancer by being ‘weak’ or by showing their emotions. This is a common reaction. But no one can cope with everything all the time.

Expressing and sharing your feelings can help everyone. If friends and family know how you are coping, they can better understand what support they can provide.

How can I make this better?

You may want to fix things, but you can’t change what has happened, and this can be frustrating. It may be the first time you have faced a problem you cannot solve. Feeling powerless and without control is common. Try to focus on what you can do – for example, you can try to:

  • listen to the person’s concerns
  • gather information to help you make informed decisions
  • be honest, share your own concerns
  • reassure the person with cancer that you love and support them
  • look after yourself as much as possible, physically and emotionally. This will help you in your caring role.
Feelings of loss

You may grieve about how things used to be with the person you are caring for, or your loss of time and ability to enjoy life as you used to. You may be starting to grieve the anticipated death of the person you are caring for. Your emotions can go from feeling very caring and protective to feelings of anger and resentment about what you have lost or may lose.

Everyone deals with loss in their own way, but there are things you can do to help. Acknowledging your grief and knowing that it is alright to cry or feel angry helps some people feel more in control.

Most carers find it helps if they feel supported by those around them. Don’t be afraid to ask for help or let those close to you know how you are feeling. For more information about coping with loss and grief and how to get support, call a Cancer Council nurse on 13 11 20.

Uncertainty

Many people struggle with uncertainty when the future is unknown. What you had planned for and dreamed about may have changed. Many things might have to be put on hold if you are not sure what is ahead. Try not to make any major changes or big decisions at first. The anxiety will come and go. It can help to learn ways of dealing with it.

  • Practise changing your thoughts to focus on what you can do. Remind yourself that you have coped with difficult times before and try thinking about what helped you get through those times.
  • Learning to relax may seem impossible at first, however, simple relaxation strategies can make a big difference. Your local community health centre or council may run relaxation, yoga or tai chi classes. Appropriate exercise, adequate sleep and a healthy diet can also help.
  • A support group can be helpful. Face-to-face, internet and telephone support groups are available. These are groups of people in a similar situation that meet regularly to share their experiences. There are groups for people with cancer and their carer/s or groups just for carers.

"I found the brain tumour support group beneficial. Firstly, to gather knowledge from other people, but then I felt a sense of ‘giving back’ to new members"
Rosie

  • Information helps many people feel they have some control. It can help you to know whether you need to make any changes, and to make decisions based on the facts.
  • If at any stage you feel that you are not coping, speak to your doctor or another health professional. They can refer you to a counsellor and prescribe short-term medication if needed.
Depression

Some carers become depressed. This is a natural response to a stressful situation. You will almost certainly find that you have bad days, when nothing seems to go right and your problems feel overwhelming. For many people, these bad days will be relieved by days where, even though things are not perfect, there is still some joy and calmness.

If you find that you are not feeling any pleasure, that you are stressed, irritable or emotional almost all the time, you cannot sleep or have lost your appetite, talk to your doctor. They may be able to show you ways of dealing with these feelings and symptoms, or refer you to a counsellor, psychologist or psychiatrist. They can also recommend medication if it is appropriate for your situation.

People with advanced cancer can also become depressed. If you notice symptoms of depression in the person you are caring for, such as difficulty sleeping, changes in appetite, no longer being able to enjoy the things they usually enjoy, discuss whether they would like to see a counsellor or doctor.

Dealing with the changes

A diagnosis of advanced cancer can change the dynamics and roles within your family, friends or relationship. Changes may only last for a short time or be longer lasting.

How cancer can affect relationships

Cancer can strengthen a relationship or strain it. Try to be open and honest. Before starting a complex or emotional discussion, try to determine if it is a good time to do so. If you begin to feel there is never a good time, perhaps a counsellor or social worker can talk with you about your relationship, illness or your feelings.

You may find yourself thinking about how you will manage if the person with cancer dies. This is natural, but try not to exclude them from everyday events and decisions. If people with cancer are physically able, they often prefer, or even need, to take on daily activities to help maintain their sense of independence. They don’t have to, and often don’t wish to, feel helpless.

How to find a counsellor
  • Your GP can refer you to a counsellor, social worker or psychologist at your hospital.
  • The Better Access initiative allows GPs to refer people to psychologists or social workers for several free sessions.
  • You could also see a private counsellor or psychologist for a fee.
  • Your local palliative care service or Cancer Council 13 11 20 can put you in touch with a counsellor who has oncology related experience.
Religious and spiritual beliefs

Some people find that cancer challenges their religious or spiritual beliefs. Others may find it brings new strength and hope.

Often someone with similar faith and values may be able to help you with difficult questions such as, ‘Why is this happening?’ and ‘What have we done to deserve this?’ Some people feel no desire to pursue religion or spirituality at this time. This is a personal decision that only you can make.

Talking about death and dying

When cancer is advanced, one of the first questions family and friends often ask is, “Will they die?” This can be a frightening thought and make it hard to talk about.

The fear can often be mixed with other feelings, such as anger, guilt or sadness, especially if the person with cancer wants to talk but you find it too hard to listen.

Sometimes, knowing the person’s wishes can help you avoid regret or feelings of guilt later on.

Although it can be difficult to discuss, death is an important topic. There can be practical issues to resolve such as place of death as well as emotional ones such as resolving a difference with a close friend or family member.

Cancer Council also has a booklet called Facing End of Life: A guide for people dying with cancer, their family and friends.

There may come a time when you are both ready to talk about these issues. But if the person with cancer is not clear what they’d like or is avoiding the conversation you could suggest they talk with someone else. This could be a relative less affected by the diagnosis or a close friend they trust with their thoughts and feelings.

Practical concerns

Work and income

You may need time off work to attend medical appointments or to care for the person with cancer. Explain your situation to your employer. Most employers appreciate honesty and will try to accommodate your needs. Find out your entitlements because you may be eligible for time off. It may be easier for everyone if you have some time off, at least until things settle down and you have a better idea of what is ahead. Some employers will let you take annual leave, long service leave or leave without pay.

If time off is not possible or desirable, talk to friends and family about how they can support you. It may help if you are specific about what you need, for example, transport to appointments, providing company or making meals.

You may be eligible for a carer payment from the government if you provide constant care for the person with cancer (whether or not you work outside the home). Speak to your hospital social worker about the different types and other sources of financial assistance. Cancer Council also has free resources on your rights in regard to care and work.

Accepting help

Not all your family and friends will know how to respond and provide support – some may not know what to do or even avoid contacting you at first. They may want to avoid thinking about their own death or be afraid of saying the wrong thing, so instead say nothing.

This doesn’t necessarily mean family and friends don’t care; they may just feel unable to deal with the situation. If you like, you could try calling them, explain what is happening or ask them to do a specific task, for example, providing a meal or returning an overdue DVD. This can help someone feel useful or involved and next time they might feel comfortable enough to call you or just drop in. People sometimes need to be told specifically what they can do.

You may find it difficult to accept help, especially if you are used to managing everything. Try to see it as a strategy for getting through a difficult time. You may choose to think of your requests as letting others feel useful, rather than asking for help.

Carers with young children

Carers with younger children will need support. This does not have to be expensive. Call your local council to find out how they can help you. Social and religious groups and schools can often be good at organising people to cook meals, provide transport and other practical things. Take up offers to help from neighbours and friends.

Emotional and physical strain

Carers need to look after themselves too. Being a carer can be tough, especially over time. Physical wellbeing is often closely tied to emotional wellbeing. Take time to do the things you normally do that help relieve the pressures of the day and give you pleasure. This time-out from caring for a person with cancer strengthens you for the time you devote to them.

Carers often feel like they are on an emotional roller-coaster. Some moments are extreme highs and others extreme lows. On some days, there are times to stop and have a break, but on other days you can feel like you have had enough. At times, you may even find yourself wishing the person would die so you can both have some relief from the disease and its impact.

Providing physical care

Providing physical care is a challenge for many carers. If the person you’re looking after needs help to get out of bed, you will need to be taught how to move them safely. Ask the district nurse, doctor or physiotherapist to show you the best way to do this and take care when you do it, as it’s easy to injure your back.

If the person you are caring for requires more care than you think you can manage, talk to your doctor. Home nursing services and a palliative care team can provide professional help at home.

LifeCircle also provide support for the carer of someone who would like to be cared for and ultimately die at home.

Practical ideas for carers
  • Use an answering machine to record messages or ask someone else to return calls if you are tired and don’t feel like talking. This avoids having to repeat information for family and friends who like to be kept informed of what is happening.
  • Ask someone to take on the role of information provider. Make sure this person has the latest information.
  • Group emails, sent regularly, are a great way to let people know what is happening.
  • Place a message on the door when it is not a good time for visitors.
  • Turn off the phone and have a rest when the person with cancer is resting.
  • Talk to people you trust about what is happening. It helps them to understand what you are going through, and helps you release any concerns or stresses you have.
  • Make a list of 10 things you like to do and make sure you do one of them each day.
  • Take time out. There will be times when you feel exhausted or overwhelmed. This is normal. Take a book and sit outside, go for a walk or go for a drive.
  • Try not to do everything yourself – leave some tasks for others to do. It is hard to do everything, no matter how organised you are.
  • Be realistic about how much you can do, as doing too much may affect how well you cope. Do what is important and less of what isn’t.
  • Involve friends and family in the caring.
  • Call Cancer Council 13 11 20 to get in contact someone who has had a similar experience.

Reviewed by: Dr Kathy Pope, Radiation Oncologist, Peter MacCallum Cancer Centre, VIC; Jessica Abbott, Cancer Care Dietitian, Alexandra Hospital, QLD; Frances Bellemore, Clinical Care Nurse, St Vincent’s Hospital, NSW; Gabrielle Gawne-Kelnar, Telephone Support Group Facilitator, Cancer Council NSW; Helpline and Cancer Counselling Service staff, Cancer Council QLD; Di Richardson, Consumer; Dr Mary Brooksbank, Philip Plummer and Claire Maskell Gibson on behalf of Palliative Care Australia.
Updated: 01 Dec, 2013