Taking care Looking after someone you love when they’re unwell can have its challenges. Just remember to take care of yourself, too.
Feeling good about what you do If you feel positive about your caring role, you’ll do it well and have the strength to keep on doing it for the weeks and months ahead. But if you feel run down, overburdened or unappreciated, it may become an unpleasant experience. Here are some ideas for making sure that you keep on feeling good about being a carer.
Understand the difference Your needs as a carer are different from those of the person you’re looking after. You have your own responsibilities, your own anxieties, your own pressures. Use the available services (see “Back-up for carers” below) to help manage your own feelings and challenges.
Share the load Caring for someone around the clock, seven days a week, isn’t healthy. To protect your own wellbeing and that of the person you’re caring for, put some support in place. Ask friends or family members to contribute some time so that you can get a break, or make use of the government and community support services available.
Don’t wait till it’s too late If you wait until you’re at breaking point before asking for support, you could hurt both yourself and the person you care for. Looking after yourself and taking time out are not selfish acts. Quite the opposite. Those are the things that will help you to keep on doing what you’re doing, and feel good about it.
Take stock Your duties may change if the condition of the person you’re caring for worsens. The support you have been relying on may no longer be enough. If circumstances change, get back in touch with government and community support services to see what extra help you can access.
Feel no shame At times you’ll feel angry, resentful, irritable and maybe even hopeless. Let these feelings come and go without criticising yourself for having had them. Others in your situation have felt exactly the same way.
Doing it well Part of your role as a carer is to liaise with the care team and keep track of medical details.
Make a list Write down the names and the phone numbers of all the medical people you’re dealing with, and the contacts for any support agencies you’re working with. Keep the list by the phone so that other people can access it when you’re not there. Program the numbers into your mobile phone, too.
Keep a diary After a while, all the visits and appointments start to blur. Get into the habit of noting each visit in a diary. Include the name of the person you saw, the purpose of the visit and any new information gained that day.
Ask questions Before any appointment, ask the person you’re caring for if there are any questions they’d like to ask while they’re there. Take the list along so that you can prompt these questions if necessary.
Back-up for carers There are programs and services available to support carers in a range of circumstances.
Young Carers Respite and Information Services If you’re under 25 and caring for someone with cancer you can access support through the Department of Families, Housing, Community Services and Indigenous Affairs (www.fahcsia.gov.au). Support includes tutoring, holiday activities, respite care and referrals to services including counselling. Call 1800 052 222 for information on respite. Call 1800 242 636 for details on other services.
National Respite for Carers Program Through this program, you can organise for someone else to take on some of your duties as a carer while you take time out. For details of local programs get in touch with the Commonwealth Respite and Carelink Centres on 1800 052 222.
Other respite options State governments and cancer groups around Australia also offer respite programs. Sometimes these involve someone coming to your home while you go out and take a break. Sometimes it will mean having a person doing some of your domestic duties so you can concentrate on your caring role. And sometimes the programs involve days or weekends away at a recreational facility, either for you or the person you’re caring for. To find out what’s available near you, call the Cancer Council Helpline on 13 11 20.
National Carers Counselling Program Short-term counselling is available through Carers Australia to help carers with issues including stress, loss and grief. For more information call Carers Australia on 1800 242 636.
Making the most of respite It’s important you look after yourself so you don’t get overwhelmed by what’s going on. Organising respite services is a good first step, but you also need to be able to make the most of that time.
Start small Leaving the person you’ve been caring for in someone else’s hands may make you anxious, even distressed. Begin by accepting respite for just an hour or two here and there. Over time, you can work up to having days or even weekends to yourself.
Switch off Leave your cares behind, even if it’s just for a few hours. Try not to use this time to run errands or make appointments for the person you’re caring for. Do something for yourself instead.
Share your story Prepare a book or folder of information for the respite carers visiting your home, including personal and practical information about the person you’re caring for as well as some helpful details about how things are arranged in your house. Knowing that carers have a more personal understanding of your situation can help you relax when you’re having time off.
Financial support Centrelink provides financial assistance to carers through a range of payments including Carer Payments and Carer Allowances. Go to www.centrelink.gov.au, drop into your local Centrelink Customer Service Centre or call 13 27 17 for more information.
Carer Payment People who are unable to support themselves through paid work due to the demands of their role as a carer may be eligible to receive a fortnightly Carer Payment depending on their income and assets.
Carer Allowance People providing daily care and attention for a person with a permanent or long-term disability or a medical condition may be eligible for a Carer Allowance. This payment is not income or asset tested and can be paid in addition to ordinary wages or other income support payments such as the Age Pension, Carer Payments or Parenting Payments. The allowance is usually paid fortnightly.
Carer Supplement Payment People receiving either the Carer Payment or the Carer Allowance (or both) may be eligible for an annual Carer Supplement Payment. This lump-sum payment is intended to help offset the costs associated with caring for someone.
Getting a second opinion Under the Fair Work Act, you cannot be disadvantaged at work because of your role as a primary carer for an immediate family member. In addition, you have access to up to 10 days of paid carer leave every year. After that, you can take up to two days of unpaid carer leave. It’s within your rights to ask your employer to agree that you can always leave work on time and to let you use a work telephone to check on the person you’re caring for or to make arrangements on their behalf. You should also feel confident about asking your employer for more flexible work arrangements during this period and to ask about taking additional unpaid leave. Call the Fair Work Infoline on 13 13 94 for more information.
Words to know
Carer any individual who helps someone with cancer manage their condition. They could be a partner, relative, friend or colleague of the person with cancer
Centrelink the government agency that provides financial assistance to carers and other community members in need of support
Respite an arrangement where someone looks after the person you’re caring for while you take a break
Expert's insight: Dr Amanda Hordern Dr Amanda Hordern, from Cancer Council Victoria, has been on the front line of cancer information services for 16 years. She knows all about the perils and pitfalls facing carers.
“I think it’s important to note that many people don’t even identify themselves as ‘carers’. On most occasions, the carer is a partner, but the term can also mean a friend, neighbour, cousin, colleague or anybody in the person’s life.
“There’s a huge amount of research coming out suggesting that carers are themselves at risk of ongoing health problems because of the stress and anxiety in the role they’ve taken on. This often goes unrecognised and, in many circumstances, carers are even more anxious and depressed than the cancer patient. If you haven’t had a good night’s sleep for a long time, that’s a sign that you may need some help.
“Each carer is different. Some people have said to me that being forced to leave their loved one with a respite person agitates them even more, but there are ways and means of taking a break. It could be as easy as asking someone to pay a bill or walk the dog. Communication is very important.
“It can also be very frustrating for a carer not to actively intervene when a person with cancer decides to go extremely alternative after conventional treatment has failed. Carers often feel like they don’t have a right to tell their partner how to manage their own life. People may spend a lot of time looking for that elusive cure when all the carer wants is to just spend some precious, quality time with them.”
Expert's insight: Angela Controneo Counsellor Angela Cotroneo, of Oncology Social Work Australia, says that needing to take a break – and needing to have a whinge – are a normal part of the carer experience.
“Carers need to have time to themselves and sometimes the patient wants some time away from the carer, too. They may feel that they are being too much of a burden.
“Carers may also need counselling if they feel overwhelmed. Feelings such as these are normal, as is wishing it was all over and done with. Sometimes these negative feelings are best expressed to a third party, whether that’s a professional counsellor or just a friend or another family member.”
Things to ask
Am I a carer? Sometimes people slide into the role of carer without even realising it. If you’re a partner, a relative, a friend, a neighbour or a colleague of someone with cancer and you’re helping them manage their condition, then you’re a carer. You may be a sympathetic listener or a shoulder to cry on. You may be a connection with the outside world. You may be sourcing new information or extra support services. You may be helping with domestic chores or providing personal care. Whatever your relationship and whatever the extent of your role, you may find that caring has its challenges as well as its rewards.
Can you be a carer if you live far away from the person with cancer? Yes. These days it’s common for family members to be spread far and wide and it’s not unusual for someone to be caring for a loved one from another town or even another country. When you’re caring from a distance you can feel that you don’t have as much information as you need and that you’re being left out of important decisions, especially if other family members live closer to the person with cancer and are more immediately involved in their care. You can also feel guilty that you’re not able to provide more hands-on support. Try to focus on the advantages of your situation. Sometimes distance gives you an objectivity that can aid decision-making. It may also allow the person with cancer to share their thoughts more freely with you than they feel they can with people around them. And remember that regular phone calls, emails and text messages can keep you in the loop as well as being a source of comfort to the person you’re caring for.
Are their services for indigenous carers? For cultural reasons, indigenous carers often don’t identify themselves as ‘carers’. As a result they often don’t access programs and services that could be a great support to them. Through local branches, Carers Australia offers services to indigenous Australians that are modified to suit the family structures and kinship traditions of indigenous carers. They also offer respite and support services in some of the remote communities in the Northern Territory. For contact details, see “More help” below.
More Help
Australian Pain Management Association 1300 340 357 www.painmanagement.org.au For advice on how to cope when the person you’re caring for is in pain.
Carers Australia 1800 242 636 www.carersaustralia.com.au For information and links to carer support services nationally.
Cancer Council Helpline 13 11 20 For information on carer support services.
Commonwealth Respite and Carelink Centres 1800 052 222 www.commcarelink.health.gov.au How to access government-run carer support services.
Department of Families, Housing, Community Services and Indigenous Affairs (FaHCSIA) 1300 653 227 www.fahcsia.gov.au Lists support programs and payments for carers.
Hello and How Are You? www.macmillan.org.uk This online booklet by the UK’s Macmillan Cancer Support has advice on the personal and practical issues of being a carer. Go to the website and follow the links to Cancer information > If someone else has cancer > Caring for someone with cancer and click on “Hello and how are you?”
JUSTINE CHILMAN-MOORE In 2005, Justine Chilman-Moore’s husband Ashleigh* was diagnosed with cancer of the head and neck.After the initial shock, Justine got to work. Each night, after putting daughter Brook to bed, she’d take to the internet researching the illness. Ashleigh managed to beat the cancer, but almost five years (and another daughter) later, cancer was found in his lung.
In 2005, Justine Chilman-Moore’s husband Ashleigh* was diagnosed with cancer of the head and neck.After the initial shock, Justine got to work. Each night, after putting daughter Brook to bed, she’d take to the internet researching the illness. Ashleigh managed to beat the cancer, but almost five years (and another daughter) later, cancer was found in his lung.
“When the first diagnosis came through in 2005, I’d never felt that bad in my life. You get to the point where you’re going through so much fear and panic that you can’t function normally.
“There is specific information on the internet, but if you don’t have a medical background it can be overwhelming. Talk over what you’ve discovered with your medical practitioner as some treatments may not apply. Also, don’t be afraid to seek counselling as it’s a normal response to an abnormal situation.
“Brook was two then and we noticed that she regressed. We were getting her out of nappies at that time and she was doing well until Ashleigh’s illness. She must have sensed something was wrong and she started struggling with the toilet training. We were told this was quite normal behaviour.
“Ashleigh was exhausted and drained. The treatment meant that he was only able to take in fluids, so I was making up juices and taking them into the hospital.
“Our hard work paid off. Ashleigh had been doing so well and he’s a non-smoker, so lung cancer came as quite a shock last year. We have two children now and it was very tough telling the older child that Daddy wasn’t well again. Understandably, she was quite anxious.
“Once a month I talk to three others in a teleconference situation as I was unable to find any lung cancer support networks in South Australia. You may be in the same situation, so go through the professionals and they’ll try and put you in touch with other carers.”
BARB GALVIN When Barb Galvin’s mother, Shirley, had a tumour removed from her colon in 2004 Barb stepped in, caring for Shirley through three operations, chemotherapy and radiotherapy until her passing in 2006.
In 2007 Barb donated money from Shirley’s modest estate to the Cancer Council NSW to purchase the Shirley Shuttle, a minibus to transport cancer outpatients to treatment on the Central Coast of New South Wales.
“At first I went with Mum to appointments just to offer moral support. As the cancer progressed, caring for Mum became my main focus. It was hard, but I wouldn’t have wanted anyone else to take over from me because I’m single with no children and she was the most important person in my life.
“It was tough for Mum, too. She even said to me, ‘I’m ruining your life.’ I put a brave face on for Mum, but at night I did get depressed and lonely. So I was grateful for the support of my closest friend who’d visit Mum, make meals for us and invite us over.
“I kept on top of things by taking notes of advice given at appointments, medications and their side effects. At the end when she couldn’t leave the house I’d go to her doctor on her behalf – usually in tears.
“The worst part was seeing Mum in so much pain and not being able to get help. I wanted Mum to be at home, but I couldn’t get a GP to come to the house and palliative care [services] were no help. The only way I could get medical attention was to call an ambulance.
“I am retired and was lucky to have the time to devote to her, but Mum’s illness created a big gap in my life – the gap she left after she passed and the gap in my social life when I didn’t have anything to fall back on after she was gone. I had been very active with volunteering, but I had to give all that up.
“The most positive part of the experience was feeling satisfied I’d done absolutely everything I could to help her, and now the Shirley Shuttle is keeping her memory alive.”