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Information For Carers

Information for Carers, from Carers 

Recently, a study with carers of a spouse with cancer was conducted in the ACT, funded by Cancer Australia and Cancer Council ACT. The purpose of the study was to better understand carers’ needs and support preferences. A more detailed account of the research methods and findings can be found here: Carers of Cancer Patients: Understanding Their Support Service Needs. The information below provides a summary of experiences passed on by those who have been through it: carers of cancer patients in the ACT. You may also like to read our publication Caring for Someone with Cancer. 

Protecting your Wellbeing
While caregiving is often rewarding, it can also be physically, financially and emotionally taxing. Studies show that carers suffer from higher rates of depression, stress and anxiety than their non-caregiving counterparts. Stress, depression and anxiety alone can be debilitating and can also increase a person’s risk of certain physical health problems. 

It is important as a carer to protect your wellbeing Carers interviewed in the study reported taking breaks and seeking professional help to maintain their wellbeing. Some went on holidays, went for walks, met friends or organised with respite services to allow them a break. Others met with counsellors, financial advisors and support groups to learn different ways of coping, managing their emotions and protecting their health. 

• Some patients may not have their own General Practitioner (GP). In this situation the carer can take over as the record keeper, collecting scans, test results and an overall patient history that can be easily presented to specialists.
• The importance of taking notes. During a medical appointment, a patient may not be able to absorb all the information. In order to recall accurately what was said during an appointment, carers strongly recommended taking notes or using a voice recorder. However, some medical staff may interpret note-taking as a sign that a carer or patient wants to challenge or even take legal action against them. One carer said, “I would write things down, but people took offence at that…they think you are going to sue or make complaints.” To prevent this miscommunication, carers recommended asking medical professionals, Do you mind if I write things down…because that is the only way I can remember?
• Asking questions is another important task. When patients are not well enough to ask questions themselves, the carer and family can take over. It is also important to ask questions about how to be a carer and how to protect your health.

Be persistent. You may have to ask repeatedly for information or to see support personnel. Hospitals are large systems and it is easy to “fall through the cracks.” Carers said simply waiting for help would not work; you have to persistently and respectfully ask.

Responding to Emergencies at Home
Carers often take responsibility for patients at home after surgery, treatment or while on certain medication. Sometimes, patients do not respond well: they might develop infections or allergic reactions. It is important for carers to know what to do. Your GP and/or specialist may give you a number to call in case of emergency. If not, ask your GP and/or specialist: What should I do in an emergency? Who should I contact after hours? If you’re not sure who to contact, try one of the following: 

•  CALMS (Canberra After hours Locum Medical Service) on 1300 422 567. For people living in or visiting the ACT, you can make an appointment to see a GP afterhours in one of their clinics or if appropriate, they can also make house calls.
• Health Direct on 1800 022 222. This is a free 24 hour telephone health triage, information and advice service, which is answered by a registered nurse. Asking questions is another important task. When patients are not well enough to ask questions themselves, the carer and family can take over. It is also important to ask questions about how to be a carer and how to protect your health.
• or if you need an ambulance call 000.

Time and Money
For some carers, the time constraints of managing multiple roles, work, parenting and caregiving, makes cancer caregiving even more stressful. Financial support and respite services might be helpful. Talking to a social worker may help in determining your eligibility for services and in explaining how to apply. You can ask to talk to a social worker at the treating hospital or through ACT Community Health on 6207 9977, for ACT residents.  

 Asking friends and family for help with specific tasks such as babysitting, cooking, or driving the patient to hospital appointments can also be useful. As one interviewee explained, people want to help but they do not want to intrude. They “don’t know what to do. So if you ask them, you are doing them a favour and you are doing you a favour.”

Visit our Cancer Information page for information on a range of common legal and financial issues faced by people with cancer.

Staying Positive
Often carers try to lift the patient’s spirits and help them to be brave and positive. Some carers believe this improves the patient’s immune system, though the evidence is not clear on this link. Others help the patient to be positive because it helps the carer to feel some sense of control and because it is easier for the carer, friends, family and medical staff to support the patient if they are positive.

Fear and Grief
A cancer diagnosis has a big impact on both the patient and the carer. It may challenge the way you see the future; what was once fairly definite becomes uncertain and ambiguous. As a consequence, many carers and family reported experiencing a particular kind of grief where they are more aware of their fragility, where they make more immediate plans and adopt new priorities. Making plans in the distant future was often accompanied by a sense of guilt. Knowing that you are not alone in experiencing this fear and grief may provide some comfort.