Janine, a carer in regional Queensland, cares for her mother, who has a mental illness, and her elderly grandmother. It’s a round-the-clock caring role and Janine is the major support and comfort for her relatives.
Janine recently experienced a very serious health event; one requiring immediate hospitalisation, treatment and ongoing monitoring. She desperately attempted to arrange some respite care or support for her mother and grandmother who could not cope on their own. When she was unable to find respite, Janine discharged herself from hospital to go home and care for the two women, putting her own health at risk.
I heard this story at a recent Carer Conversation and it has stayed with me me ever since. Unfortunately, although extreme, it’s not an uncommon story: carers putting themselves last.
In Australia, unpaid family and friend carers provide 1.8 billion hours of care annually at an estimated replacement value of $60.3 billion.
However, caring comes at a cost. The cost of a good night’s sleep, of eating nutritious foods, of physical injuries brought on by frequent manual handling, of isolation and loneliness, social and economic exclusion, depression, anxiety, and poor physical health.
Research has shown that the use of respite supports the carer and can delay or prevent the permanent admission of the person cared for into residential or another care facility. Unfortunately, access to respite appears to be getting increasingly more difficult for carers.
Research conducted by the network of State and Territory Carer Associations into the availability of aged care respite services demonstrates that wanting and needing respite care is one thing, but being able to access or purchase the service is another.
The research clearly shows that there is a persistent under-supply of residential respite and other respite types are not always easily accessible. Completed by aged care providers and Commonwealth Respite and Carelink Centres (CRCC), the survey data supports the anecdotal evidence of carers – none of the survey respondents found emergency respite easy to access and only 3% were able to access planned respite very easily.
Finding emergency respite is the most difficult as it is not always available immediately. At times there is no option but being admitted to hospital.
The survey found that in-home respite was the easiest to access across the country except in Queensland where 44% of respondents said it was difficult or very difficult to obtain. Even more difficult is accessing respite care for people with dementia or other challenging behaviours – 64% of respondents said it was difficult or very difficult.
In the words of one survey respondent: “If the Commonwealth wants people to stay at home longer, then carer fatigue must be addressed to meet the need for the carer to relinquish care temporarily without being consumed with guilt and anguish because of the conditions, environment and standard of care provided to the recipient when they are in the facility.”
Ahead of National Carers Week (15–21 October) Carers Queensland released its annual Quality of Life Audit, a survey that attracted responses from 448 carers. The survey found that 80% of carers hadn’t had a day off in the past seven days, while half hadn’t had a holiday or weekend away in two years.
The information provided by the survey respondents shows that many carers lack the finances to purchase respite care. For some, the barriers are cultural, while others were unaware of respite services available to them.
Another major challenge for carers is that the person they care for may not want or feel they need to go into respite care.
One carer told us, “I can access respite care, but my husband doesn’t feel comfortable with a stranger in the house with him. He just likes me to be with him. I am coping very well, I think, and I am on antidepressants to keep my cool and make me feel relaxed.”
When talking about the need for respite for carers, it’s important to remember that it’s not as simple as “more places”. Instead, we need to think about how, when and under what circumstances carers access respite, and about providing a suite of options so that carers like Janine don’t fall through the cracks.
While Carers Queensland will continue to advocate to both State and Federal government, it is not just a government responsibility. One in 8 Australians is a carer, meaning each of us knows several carers. We can all provide them with a bit of break from their day-to-day responsibilities – inviting them for a cup of tea and a listening ear; spending an hour with the person they care for so they can do something for themselves; or going to the shops or the chemists for them – every little thing can make a big difference to the life of a carer.
During Carers Week we were reminded that Australia counts on carers, so let’s all shows carers that they can count on us.
National Carers Week runs from 15-21 October.