What is it?
Caring for someone who is seriously ill or dying is hard work – both emotionally and physically. As their health steadily declines and they become increasingly dependent on others, the dying person will require constant care by their informal ‘inner circle’ (primary person caring, partners, children, family, friends etc.), as well as their formal ‘outer circle’ (GP, health and community services, palliative care, LifeCircle guides etc.).
As well as tending to the needs of the dying person, you may also need help with the many day-to-day tasks of running a household. Whether you have been caring for someone for a long period of time or have been thrust into the caring role quite suddenly, it is useful to know about the broad range of practical services designed to support you. These include but are not limited to:
- Palliative care – a multidisciplinary health care approach that improves the quality of life of patients and their families facing a life-threatening illness, through the prevention and relief of suffering and the treatment of pain and other physical, psychosocial and spiritual problems
- Respite care – home, community or centre-based services that provide care so that primary caregivers can take a break
- Transport services – assistance transporting patients to the doctor, hospital or other locations in suitably equipped vehicles; some require payment, while others are free of charge
- Community nursing – comprehensive nursing care (health assessment, wound management, palliative care, continence care and stomal therapy) provided at clinics in community health centres or in the client’s home. A referral from your GP is required to access these services
- Equipment – specialised equipment or aids to help you care at home; talk to your GP or local health service about how to access these. Some disease-specific organisations also loan or hire equipment
- Financial support – one-off or ongoing government-funded financial assistance (such as the Carer Payment and Carer Allowance) for people who provide daily care to someone who has an illness, disability or is ‘frail aged’. The Commonwealth Government’s Department of Human Services also offers financial support for medical equipment and incontinence products (see www.humanservices.gov.au for details)
- Work and study assistance – information and resources for people who are trying to balance caring with work and study. See the Working Carers Gateway
There are a number of online platforms that offer help with particular tasks and aspects of the caring role or even with help around the house:
- BetterHelp – private and affordable counselling from licensed, professional therapists
- Better Caring – local care and support workers available for hire for people who are ageing or those who have a disability
- Hireup – disability support workers available for hire
- Airtasker – people you can hire for home and office tasks, from handyman services and garden maintenance to pick-up and deliveries
Respite care gives you and the person who is seriously ill a break and may relieve some of the stress associated with caring. It can give you time to do everyday activities or just rest and recharge so that you can continue to care for your loved one at home. Respite care can be provided informally by family or friends or formally by a respite service. Some people may choose respite at home, while others prefer community or centre-based services. Short breaks – a few hours or part of a day – are offered by in-home respite and day centres. Longer-term breaks – a full day, overnight, a weekend or a few weeks – are offered by day centres, overnight cottages or residential aged-care homes.
Why is it important?
The day-to-day work of caring can be challenging if you don’t ask for help and share it with others. It can also take up valuable time that could be spent making the most of those final months, weeks and days with the person who is dying. The more you share the practical work, the more space you will create for the precious moments of connection with your loved one. Being well supported can completely change your experience of caring.
When do I access it?
It’s a good idea to start building your Circle of Care as soon as you make the decision to care for someone who is dying, whether at home or elsewhere. This group of people will be your support team, helping you every step of the way.
You can arrange respite and other services as and when you need them. At times – such as when you are feeling emotionally vulnerable, stressed or exhausted – you may need additional support or to take a break from caring.
How do I access it?
For more information on the different types of respite services that are available, who is eligible and how to get the most out of respite, visit the Australian Government’s Carer Gateway at www.carergateway.gov.au or call 1800 422 737.
A network of Commonwealth Respite and Carelink Centres (CRCCS) has been established around Australia. These centres can assist carers to take a break through short-term and emergency respite services. They can also provide advice on, and coordinate access to, a range of services in your local area. You can contact your nearest CRCC 24 hours a day, seven days a week on 1800 052 222 (1800 059 059 outside business hours).
Our Circle of Care model may also assist you with coordinating the help of others.