As Dot Holt tried to organise short-term respite for her mother in an aged care facility in regional Victoria, she was told: "unless somebody dies you won't get any".
Ms Holt spent 12 years as her elderly mother Dorothy's full-time carer while working five-night shifts a fortnight as a nurse at a Mildura residential aged care facility during most of that period.
Being a carer is hard, the 67-year-old told the aged care royal commission.
"It never stops," Ms Holt said.
"It was like having a child in the house. My whole life revolved around getting mum fluid, food and sleep."
Ms Holt said she hated putting her mother into respite care, feeling guilty even when she needed a break.
It was easy to organise the first lot of respite, at the facility where she worked.
But it became impossible to organise respite in advance anywhere in Mildura in 2015 after Ms Holt experienced her own health problems.
"I wanted to have a break and was told within Mildura you can take it when it's available - really basically unless somebody dies you won't get any, because at that stage there were no respite beds, well we had none where I was working."
Ms Holt said it was easier to organise respite when they moved to the Barossa Valley in South Australia in 2015, although the last time she wanted a week's break she was told it had to be four weeks or nothing.
Ms Holt is one of several people caring for family members to share their experiences with the royal commission as it focuses on the needs of unpaid carers.
Ms Holt, whose 97-year-old mother has mild dementia and moved into a nursing home in 2016, said there needed to be more support for the carers themselves.
"I had the skills to support her, but you needed someone to support you because it is hard work, and it's emotionally hard work and physically hard work.
"But there's nothing there that comes in to sort of say 'are you OK'. There would be days when you'd probably pretty safely get a 'no I'm not'."
On Tuesday the royal commission will hear from people involved with a dedicated Mildura carers hub as well as experts about the significant challenges faced by unpaid and informal carers.
