A carer's impossible search

Robyn Ayres cares for her husband with advanced Alzheimer's disease at home. She needed five days away for a board retreat in Queensland and looked for respite care.

Thirty facilities, no beds

My Aged Care listed one hundred eighty-eight homes offering respite for people with dementia. Ayres contacted more than thirty of them. Not one had a place for the dates she needed.

No dedicated respite beds

Most facilities had no dedicated respite beds. Respite depended on a permanent residential care bed becoming vacant, often with waiting lists. Ayres could not book six weeks ahead because no one knew if a bed would open.

The grim reality

A bed might become available only if someone left the facility or died. Ayres needed certainty to book flights and plan her absence, not hope that a bed might open at an unknown time.

Emergency respite falls short

Carer Gateway offered emergency respite limited to four hours a day during her five-day absence. Her husband's advanced dementia requires supervision day and night. Four hours was not enough.

Creating her own solution

Ayres arranged for friends in regional Victoria to care for her husband while she flew to Queensland. She travelled from Sydney to Melbourne, then to Queensland, then back to collect him and return home.

Who has no options

Ayres is lucky: she has willing friends, adult children, money for flights and persistence. What happens to carers without nearby family, money for flights or energy to search for weeks?

Respite is infrastructure

Respite is not a holiday. If a carer becomes exhausted or unable to continue, the arrangement collapses and permanent care becomes necessary not because the person is ready, but because the carer cannot continue.

What needs to change

Ayres says governments must treat respite as essential support infrastructure. This means more dedicated short-stay places, transparent bookable availability, better coordination among services and dementia-specific funding.

“If governments want people with dementia to remain at home, policy needs to recognise that supporting the person with dementia also means supporting the carer.”

Five days should not be this hard

Five days away should not require more than thirty enquiries, dozens of emails and an interstate operation involving friends. If we want people with dementia to remain at home, we must support their carers.