Carers need looking after too
Carers may be a relative, friend or neighbour. Informal or unpaid carers make a very important contribution to the care of people across Australia. It’s important that we provide care for the caregiver as they support people on their cancer journey.
On this page:
> How to cope as a carer for someone with cancer
> Common emotional reactions to being a caregiver and how to handle them
> Additional coping strategies
> Learn to ask for help
> Do the necessary paperwork
> Additional resources
Support can be help with practical things (such as getting shopping or food), physical things (getting to appointments, doing some housework or giving medications) or emotional support (providing company and understanding).
The role of a carer is very valuable and often a very rewarding role, but it can be time consuming, exhausting, and demanding. While developing this resource, carers told us that the most important person is the patient, but that carers need some looking after too.
“Sometimes what we find is if the patient is feeling anxious or depressed the partner is also feeling that anxiety. We find that the patient’s getting that addressed but the partner feels they can’t leave the patient. They can’t have a bit of time to themselves because they need to be there for their partner. So they can struggle.”
Carers usually put the patient first, worry about them suffering and coping with a challenging schedule of caring – so they can need some caring for themselves. Below are some services that care for carers:
“I think one of the hardest things for me is it’s quite draining being very positive and supporting my father.”
Irene, carer of her dad with pancreatic cancer
How to cope as a carer for someone with cancer
Some people who take care of family members or friends who have cancer do not identify themselves with the carer role, and thus they don’t necessarily know what their role is. Identifying yourself as a caregiver can enable you to get proper information and support to help you cope with the conditions and responsibilities of caring for someone with cancer.
In 2018, Disability, Ageing and Carers Australia statistics show that there are more than 2.65 million unpaid carers all over Australia. Of these carers, 32.6% are primary carers or those who give the most informal help/ assistance to others. The majority of all carers and primary carers are females.
Most carers live under the same roof with their loved one, and among co-resident carers 36.6% are taking care of their partners, followed by 27.1% caring for a child and 26.2% caring for a parent. Carers typically take on tasks involving assistance with mobility, self care and communication, along with transport, cognitive/emotional tasks and household duties. Furthermore, it is reported that the three main reasons given for taking on a care giving role amongst primary carers are a perceived sense of family responsibility, emotional obligation and the ability to provide better care than anybody else.
Common emotional reactions to being a caregiver and how to handle them
With the advancement in early diagnosis and prompt intervention, we find that almost every day, more and more people suddenly find themselves assuming the role of a carer for someone with cancer. Sometimes, this abrupt change of role causes several reactions.
This anger and frustration can be an initial reaction to the diagnosis, a reaction to suddenly finding that you need to put your life plans and travels on hold, or it can even be projected towards that loved one who has cancer. You might feel angry and frustrated that you have to be the carer, not having family and friends to help, the burden of extra responsibilities and changes in family roles (e.g. being the breadwinner as well as carer), and being unappreciated by your loved one.
Take deep breaths and think, before you speak. Harsh words can hurt an already hurting loved one who finds they have cancer. Find other avenues for releasing the anger – a long walk, exercising, talking to a counsellor, mentor, family member or friend. Try different relaxation techniques and identify, then minimise or avoid, situations that can trigger your anger and frustration.
Fear can be because of the uncertainty of the severity of your loved one’s condition, or feelings of inadequacy of knowing what to do. You may also fear seeing your loved one deteriorate, be nervous about handling medications, or suffer from not being able to control the situation or the future.
Turn fear into an ally by using it to positively drive you into finding out more about your loved one’s condition, treatment, and medications. Identify what your concerns are as a carer and seek as much information as you can. Think short- and middle- term plans and handle tasks and challenges day-to-day or week-to-week. Consider long-term plans by having the sick loved one make advance directives or have the role of Enduring Power of Guardianship assigned.
Even if you have other help around, you can still feel solely responsible for caring for a loved one with cancer. Being a carer might take lots of hours out from your day or week so you feel you don’t have time to socialise anymore. Some people may avoid visiting you because they do not know how to interact with the sick loved one you’re caring for. This can leave you feeling lonely and isolated.
You may feel guilty of being resentful and angry at situations or people, guilty about not doing enough as a carer or of forsaking your other family roles while taking up the role of a caregiver. You may even feel guilt when you feel you want to take a break from being a carer.
Try to keep communications open with family and friends. Some days, when face-to-face meetings/visits are difficult, use other forms of communication like phone calls, video chats like Skype, or email and blogs, and other social platforms. Encourage a family friend or a mentor to visit you in the house or call you every few days to check up on you.
Avoid using the words “should” and “must” on yourself. Try talking to the one you’re caring for about your feelings of loneliness and guilt. A chat with a counsellor or a religious mentor can help you process your emotions. Join local support groups and accept help from family members and friends. Some non-profit groups have volunteers you can talk to on the phone, online through forums or who can meet you in your home.
Financial burdens of caring for someone with cancer can leave you anxious and depressed. Not being able to do what you used to do before assuming the role of a carer can leave you feeling depressed. Likewise, knowing you are unable to do enough as a carer for your loved one can leave you anxious and depressed. Sometimes depression comes from the lack of sexual intimacy with a sick partner or even from the lack of appreciation.
Check for symptoms of anxiety: trouble focusing on even simple tasks, difficulty in making decisions and problem solving; feeling restless or excitable; tension migraines or headaches; disturbed sleep patterns; unexplained irritability and too much worrying; and aches and pains associated with tense feelings, like sore necks and muscles.
Watch for symptoms of depression: feeling tired all day; weight loss and loss of appetite; loss of interest in once enjoyable activities; feeling sad and lonely; and feelings of unworthiness.
Seek financial advice from professionals. Talk to a social worker or to the doctor taking care of your loved one. They can help you claim benefits for yourself (especially, co-resident carers) in terms of housing, heating, and transportation. Accept the fact that you may not be able to do everything you once did before assuming the carer role.
Be easy on yourself; there is no perfect carer. Talk to a counsellor, a community nurse, other family members and friends. Try some exercises (20-30-minute walk or jog) or relaxation techniques. Keep doing little things you enjoy – reading a chapter of a book, gardening, listening to music, doing crafts, regularly and choose to do it alone, or better yet – do it with the person you’re taking care of.
Book an appointment with your GP, who may give you medications or offer you advice to help you cope with anxiety or depression.
Loss of a regular job, loss of meaningful relationships, feeling of losing the best part of your life, can happen when you assume the role of a caregiver. Feelings of anticipatory grief can happen when you know a loved one with terminal cancer is dying.
There is no single right way to handle loss or feelings of grief. The first step is to acknowledge the emotions and talk to someone. Helplines and online grief support are available. Find more information on handling grief.
Not all effects of assuming the role of a caregiver are negative. Being able to care for a parent, partner, son/daughter, friend, or relative who has cancer can be self-fulfilling and satisfying. You find yourself learning new skills and showing your commitment and love. On difficult days, knowing you are able to make a difference in a life of a loved one may make everything worthwhile and rewarding.
Additional coping strategies
Know your limitations
As the conditions of the sick loved one changes, knowing to what extent you can do in caring for your loved one with cancer can help make the caregiver role clearer to you. Your limitations will depend on your current workload and situation.
List what your boundaries and limitations are. In so doing, you are able to identify which tasks you can delegate to other carers or family and friends. It will also guide you on which services (childcare, meals-on-wheels, transportation, or respite care) you might utilise to help provide better care for a loved one with cancer. For example, if you are uncomfortable in handling basic hygiene practices or intimate care, like bathing or cleaning up after using the toilet, seek help from a community nurse.
Allow room for growth
Don’t expect perfection in your tasks and roles as a caregiver. You may not know what to do or how to handle activities or things at first try. Keep learning and make allowances for mistakes and growth. Keep yourself informed by talking to the doctor or palliative care specialist who is taking care of your sick loved one. Talk and connect with families of cancer survivors. Join local and international support groups. Participate in activities that advocate cancer research and care.
Write in a journal or diary
Writing can be a physical manifestation of your day-to-day feelings and emotions while being a carer. You can use this journal to write down daily tasks and use it to do problem-solving. You can opt to make a separate journal for handling medications and emergency contact person and numbers.
Make allowances for your loved one with cancer
He/she may be undergoing extreme emotions and body changes that the cancer itself or the side-effects of treatments bring. Do not get offended when they lose interest in the food you prepared or can’t do the activities they used to do (e.g. sexual intimacy). They might be experiencing cancer-related fatigue.
If they snap at you, withdraw emotionally, or openly express their dislike or unacceptance of help, learn to listen to what they’re really saying. They might be dealing with feelings of loneliness, depression, distrust or pride. First listen, then talk to them. If communication seems difficult, ask for help from your health care team.
Work with a health care team
As in any care for a person with cancer, you can seek help from a dedicated health care team.
Make time for yourself
Take care of your body. Do regular exercise, eat nutritious food, and get adequate rest and sleep. Even if you do not have an existing medical condition, do not forget to get a regular check-up with your GP. Continue taking your prescribed medications. When conditions require it, inquire about proper lifting techniques and / or mobility and lifting aids. It is easy to forget about your own health when caring for a sick loved one. Stress can creep in and you can feel fatigued, burned-out, or get sick yourself. Remember you can only do so much. You can only adequately help someone else if you, yourself are fit.
Get regular breaks from caring by getting a family member, friends, or carers to pitch in and help.
Care for the caregiver – learn to ask for help
Financial difficulties can be aided by various organisations that can help you manage debt and deal with refinancing, counselling, and budgeting. Talk to a social worker and your employer, and apply for practical and financial assistance as soon as possible. Some non-profit organisations, religious groups, or your local council can aid you financially.
You can avail of primary carer support for the Department of Human Services (Centrelink) through the following schemes:
Carer payment may be available for full-time assistance carers living in the same home as the ill person.
To receive this payment you must:
- be under the pension income and assets test limits
- be an Australian resident
- care for someone who is an Australian resident
- care for 1 or more people who have care need scores high enough on the assessment tools used for an adult or child
- care for someone who’ll have these needs for at least 6 months or the rest of their life.
Both the carer and the person they are providing care for need to be eligible
A carer allowance may be available for carers who give a significant amount of assistance, in their own home or in the home of the sick person.
To receive this allowance you must:
- meet an income test
- give additional daily care to someone with a disability, severe illness or who is frail aged
- care for someone whose care needs score is high enough on the assessment tools used for an adult or a child
- care for someone who’ll have these needs for at least 12 months or the rest of their life.
You must complete a claim for a carer allowance if you’re providing care for either a:
- person 16 or older
- child younger than 16 and don’t get Carer Payment for them.
Mobility and Travel Assistance
If a person requires travel for cancer treatment, financial assistance may be obtained from local state or territory government. Travel costs can be partially reimbursed, if travel needs to be interstate.
Other Support Options
- It is worthwhile to try applying for eligibility for a Safety Net Concession Card. This will help you with ongoing finances for cancer medications.
- Outsource daily household chores like shopping, doing the laundry, or picking up the kids to paid or unpaid carers.
- Use facilities like online shopping and home-delivery for basic food supplies.
- Try a support app like Gather My Crew.
Do the necessary paperwork
Consider encouraging your loved one living with cancer to arrange an enduring power of attorney. This will give you legal “ability to act on someone else’s behalf in financial matters” (e.g. pay bills, handle shares and properties, manage bank accounts) when a loved one has lost the capacity to manage these financial matters on their own (in case of accidents, deteriorating medical condition, coma, dying).
Being a caregiver for someone with cancer can be both challenging and rewarding. Learning how to cope as a carer is important, as it will ultimately lead you to be an effective caregiver of a sick loved one.
The following resources may provide some additional useful information:
> Cancer Council carer support groups
> Beyond Blue counselling service
> Kids Helpline counselling available for young carers
> Lifeline crisis service
> Australian Government – Carer services and payments
> Aboriginal carer resources
> Pharmaceutical Benefits Scheme Net Concession Card
> Information on respite care