What help is available if I have to stop working to care for someone who is dying?
If you need to stop work or reduce hours to care for someone who is dying, help may include workplace leave, flexible work discussions, Centrelink carer payments, Carer Gateway support, respite, social work help and financial counselling.
If you need to stop work or reduce hours to care for someone who is dying, help may include workplace leave, flexible work discussions, Centrelink carer payments, Carer Gateway support, respite, social work help and financial counselling. What you can get depends on your job, relationship, income, residency and the care needs of the person you support.
General information: This page gives general information for people in Australia. It cannot tell you exactly what is happening in one person's situation. If you have concerns about a symptom, medicine, treatment decision or change in someone's condition, contact their doctor, palliative care team, nurse or other treating health professional. Workplace and payment rules can depend on individual circumstances. Check with Fair Work, Services Australia, your employer, union or adviser.
Start with your workplace entitlements
If you are an employee, check your paid leave, unpaid leave, compassionate leave, flexible work options, award, enterprise agreement and workplace policy.
Fair Work says full-time and part-time employees get paid sick and carer's leave under the National Employment Standards. Carer's leave can be used to care for or support an immediate family or household member who is sick, injured or affected by an unexpected emergency. Full-time employees get 10 days each year, and part-time employees get a pro rata amount. Unused paid sick and carer's leave carries over.
Employees, including casual employees, may also be entitled to unpaid carer's leave. Compassionate leave may be available when an immediate family or household member has a life-threatening illness or injury, or dies.
Tell your employer as soon as you can and ask what evidence they need. A medical certificate or letter from the treating team may help.
Ask about flexible work
Some carers can keep some work if hours, duties or location change. You might ask about:
- working from home
- reduced hours
- changed start and finish times
- using annual leave
- unpaid leave
- temporary changes to duties
- a planned return date that can be reviewed
Not every job can be changed, and not every employer will agree to every request. If you are unsure about your rights, contact the Fair Work Ombudsman, your union or a workplace adviser.
Centrelink carer payments
Services Australia says Carer Payment may be available if you give constant care to someone with disability, a medical condition, or an adult who is frail aged, and the care stops you from working full time.
Carer Allowance is a supplementary payment for people who care for someone needing daily support. Services Australia says it may apply if the person has a terminal medical condition or needs daily assistance for at least 12 months.
You may be able to receive both Carer Payment and Carer Allowance, depending on your circumstances. There are income, assets, residence and care rules. Claims may need forms from the treating doctor, so start early if you can.
Carer Gateway
Carer Gateway is an Australian Government program for unpaid carers. It can help with free services such as counselling, coaching, peer support, tailored support packages, planned respite and emergency respite.
Emergency respite may matter if you become sick, injured or unable to care. It is better to make an emergency care plan before a crisis if you can.
Hospital or palliative care social workers
Ask the hospital, palliative care team or GP for a social worker referral. A social worker may help with payment forms, carer support, family meetings, aged care or disability services, transport, accommodation near hospital, financial stress and planning for care at home.
If the person has cancer, Cancer Council can provide information and support through 13 11 20. Other illness-specific organisations may also help.
Money and bills
Stopping work can affect rent, mortgage payments, insurance, superannuation, tax, child support, debts and future income. Ask for help early if money is tight.
Options may include:
- speaking with a bank hardship team
- calling the National Debt Helpline on 1800 007 007
- checking Services Australia payments
- asking the super fund about insurance or beneficiary nominations
- asking whether the person with the illness can access super early under terminal medical condition rules
- asking a financial counsellor before taking on new debt
Be careful with anyone who offers quick access to super for a fee. Early access to super is only legal in limited circumstances.
When to get help now
Contact the palliative care team, GP or nurse if care at home is becoming unsafe, symptoms are not controlled, or you cannot keep providing the level of care needed.
Call 000 for a life-threatening emergency, such as severe breathing distress, severe uncontrolled bleeding, sudden collapse without an expected death plan, major injury, fire or immediate danger.
If you are at risk of breaking down or harming yourself, call 000 if there is immediate danger. You can also call Lifeline on 13 11 14.
You may also want to read
- Can someone with a terminal illness access their superannuation early?
- What should we organise after being told someone may only have months to live?
- What support is needed for someone to die at home?
- How do I actually get palliative care?