| Caring for someone | Being a carer | Your feelings & emotions |
| Practical issues for carers | Other people's reactions | Effects on relationships |
| Caring for yourself | What happens afterwards? | Help & support |
Taken from 
Caring for Someone with Cancer (793kb)
On this page:Working with the health care team
Problems with eating and drinking
Tips to cope with diet problems
Managing symptoms and side effects
Being a carer can mean juggling many different jobs each day. It will be different for everyone, depending on who you are caring for and how sick they are. Keeping a daily calendar of all your commitments can help to remind you about important times of the day for medications, appointments or jobs you need to do on time.
You may find you are regularly faced with new challenges that will become part of your role as a carer. At first some things may seem too hard to do. For example, you may not feel comfortable talking with health professionals or helping with medications. This can be very difficult, but with time, most carers say they are surprised by their new abilities. They gain a sense of satisfaction from realising the difference they are making.
Following are a number of responsibilities that you may have to fulfil as a carer.
You may be the only person who knows about everything that is going on with the person you are caring for, particularly if you have known the person prior to their illness. This knowledge can be a huge responsibility but it will be invaluable to the health care team.
‘I've been with my husband so long that I can tell when he's not well just by the bat of his eyelids.' - Marion, age 72
Along with finding out information for you and the person you are caring for you may also be responsible for passing on information from the health care team to family and friends. Getting accurate information from the right people will help you do this well. If you are going to communicate with the medical team away from the person you are caring for, the team will need the patient's consent to do this. There may be information that the person you are caring for doesn't want passed on to other people.
The health care team may include doctors and nurses as well as others who specialise in cancer care (dietitians, social workers, radiographers, psychologists, occupational therapists, physiotherapists, pastoral care workers, etc.). These people often work very closely together and are known as a ‘multidisciplinary team'. They will have regular meetings to discuss the best treatment and care for the person you are looking after. There may be times when you and other family members are asked to come along to one of these meetings.
Knowing that you have the support of a group of people who specialise in cancer can be very reassuring. But it may be confusing and daunting at first. Make sure you ask about anyone you are not sure about. Find out their roles, how you contact people and when it is okay to do so.
Overall, these people are there for you and the person with cancer. They want to help, so where possible, lean on them. Sometimes you may meet someone in the health care team that you don't get along with. This can make life difficult for you and possibly the person you are caring for. If this is a real issue and begins to cause a breakdown in communication, it may help to discuss your feelings and get some advice from someone such as a professional counsellor. See the section titled ‘Help and support'.
‘So often as a carer you don't know what you don't know about cancer.' - George, age 67
Going to doctors' visits, treatment sessions and investigations can require a lot of concentration and patience. The person you are caring for may rely on you to do the listening and ask the questions. Some information can sound complex and confusing. You may worry that you won't understand what is being said or miss something that you need to do to help care for the person, such as giving medication on time or changing a wound dressing. It is important to ask if you are unsure.
Before going to an appointment talk with the person you care for and find out what you would both like to know. Many carers say that it helps to find out more about the type of cancer and treatment the person is having. Call the Cancer Council Helpline on 13 11 20 and ask one of the nurses for more information, where to access other reliable sources of information or to speak to a Family Cancer Connect volunteer.
The nurses on the Helpline can also help you write a list of questions to take to the appointment. Take along with you a pen and paper to write the answers. Take lots of notes. That way you can refer back if necessary. Some people may prefer to record the conversation and listen back to it once home. Speak with the health care team to see if this is possible. If you are not given it, ask for written information to back up what the doctor has said so you can read this at home as well.
‘Take plenty of notes! My wife filled up a couple of notebooks and it made life much easier.' - Lawrie, age 52
This can include communicating with small and adult children, siblings, grandparents, friends and colleagues. A huge task for anyone! Most carers say this can be very tricky and exhausting. People will see you as the key person to contact to get an update on the person you are caring for. You may find yourself constantly on the phone, making calls, answering the door or emails. It can be very time-consuming, frustrating, tiring and sometimes painful to have to go over and over the same information with different people. There is also the issue of communicating with different sorts of people at different ages. Read the section titled ‘Carers need to communicate' for tips on how you can save yourself some time and energy as well as communicate effectively.
There may be past and long-term conflicts within the family that cause difficulties and make it hard for you to manage. These problems are likely to intensify now that someone in the family has cancer. There may be even more resentment, difficulties and anger.
Whatever the situation, it is very important that you get some time away to rest from your caring duties. While they may not suit everyone, the following tips and strategies may be useful in certain situations.
Organise a family forum to discuss needs and expectations. You may find it helpful to ask a health care professional to assist with this meeting to ensure that any past family differences don't get in the way of finding the best way to support you and the person with cancer.
This may sound simple but it can be quite a challenge if the home needs modifying to allow the person with cancer to get around better. If mobility is a problem you may need to move their bedroom from upstairs to downstairs or install railings around the house to help them get around safely. Talk with the occupational therapist at the hospital, who can help organise these changes.
Shopping, cooking, cleaning and caring for children can all take up time and be very tiring along with everything else you may need to do. Don't expect too much from yourself - leave the things that are not so important, or get help.
You may be eligible for help with childcare costs and home duties. Call the Family Assistance Office on 13 61 50. Local councils provide a range of community and home services such as meals on wheels, foster care for children, housekeepers and respite care. Telephone your council (listed by council in the White Pages).
Many carers say that the eating and drinking habits of the person they are caring for can be a major cause of concern. People with cancer often suffer from diet problems. This is because the cancer or its treatment can affect the body and how it functions, causing problems such as:
Most of these problems are temporary and will disappear once treatment finishes. However, for some people there may be permanent changes to the way they can eat and drink. This can be very difficult for them to cope with and hard for the carer to know how to best support them.
If you are doing the cooking you may become worried that the person you are caring for is not eating enough or that you can't seem to please them no matter what you cook. You may feel very frustrated or at a loss to know how to make something nutritious and tasty or how to encourage them to eat. If your efforts to cook nice meals don't seem to be appreciated you may begin to feel rejected.
Remember, uneaten meals are unlikely to have anything to do with your cooking but be about how the person you are caring for is feeling. They may feel sick or bloated, or have a sore mouth, making it too painful to eat. Someone with breathing difficulties will often refuse food because they become too tired and puffed when they have to chew and swallow.
People in the advanced stages of cancer may eat very little or some days nothing at all. They may not be able to eat or have an appetite. This may mean that they no longer enjoy eating so they avoid meal times. See When Cancer Won't Go Away: For Carers of People with Cancer for information about caring for someone with advanced cancer.
Even knowing why someone is not eating doesn't always help. You may continue to feel anxious about the effect of this on treatment. You may worry about weight loss and its effects. Talk to the medical team (doctor, nurse or dietitian) about how you can help manage a suitable eating plan. The following tips may also help.
Read more about ‘Caring for yourself.
Cancer Council's booklets Coping with Chemotherapy and Coping with Radiotherapy discuss ways of managing side effects. The booklet Nutrition and Exercise also contains useful information. View this information on our website or telephone 13 11 20.
Most people with cancer will suffer symptoms and side effects from their cancer and its treatment during some stage of their illness. The medical team will guide you and the person with cancer about how to best manage these. However, it can still be very frightening and upsetting to see someone suffering from side effects such as pain, ongoing fatigue, feeling or being sick or having trouble breathing. You may worry that they won't get better or that you won't be able to support them.
There are usually ways of effectively managing most symptoms. If you feel that the person you are caring for isn't comfortable or there have been changes in their condition, contact their medical team. They may need to reassess the person and alter their treatment or care. Symptoms can change depending on the stage of the cancer, treatment side effects and what the person is doing. The important thing is that you don't feel alone. You can't do everything - most carers will need help along the way. The following tips may help you feel better able to support someone through many types of symptoms.
The person you are caring for may also be having difficulties with sexual function due to their cancer and treatment. This can be difficult to cope with, especially if you are in an intimate relationship. Read more about ‘How caring affects relationships '.
You or the person you are caring for may think about unproven cancer therapy to help with symptoms and side effects from treatment. Friends may also mention unconventional treatments that they have read about helping to treat or cure cancer. There is a big difference between complementary therapies and alternative cancer therapies. Cancer Council supports people in wanting to explore different treatment choices. However, we want to ensure people have the right information to make choices that give them the best outcome for treating their cancer.
Cancer Council's booklet Complementary and Alternative Cancer Therapies is an informative discussion of alternative treatments for cancer. Visit www.cancervic.org.au or telephone
13 11 20.
These issues will vary depending on your relationship with the person you are caring for. If you are partners, it may mean that you have had to leave your work or go part time to manage your role as a carer. Some employers will let you take annual leave, long service leave or leave without pay. The person with cancer may have been the main income earner or be self-employed. Either way, it can place a lot of financial pressure on you and the rest of the family. Caring can also add many extra financial costs, some of which may be ‘hidden'.
The person you are caring for may ask you to become their enduring power of attorney during their treatment for cancer. This will allow you to act on their behalf for all their financial matters.
Get professional help with difficult issues. You may be able to get financial assistance such as a carer payment or concession cards from Centrelink. Many people don't seek assistance thinking they would not be eligible for help or they may be put off by the paperwork! Don't avoid finding out because you feel embarrassed about getting financial assistance. This is money that you may be entitled to and has been specifically allocated by the government to help sick people and their carers. You are saving the government money by caring for someone at home.
Many carers say that the amount of paperwork they need to fill in, for example to apply for the carers benefit or to get a disability parking permit, can be very complex, off-putting, time-consuming and even demoralising. With so much on your plate already, where are you supposed to find the time and energy to fill in pages of information on forms? For others, language difficulties may be a barrier. While some paperwork is hard to avoid it can help to ask the social worker at the hospital or Centrelink for help and advice. They can suggest ways to make things easier on you.
