As my husband’s carer, I sometimes need a break – finding respite care in Australia shouldn’t be this difficult | Robyn Ayres

I am a carer. My husband has advanced Alzheimer’s disease and lives at home with me. I love him and am committed to caring for him as long as I can. But advanced dementia care is relentless: no weekends, no clocking off and little chance to stop and breathe.

Sometimes I need a break. Recently, I needed five days.

I serve on the board of a not-for-profit organisation. When the board decided to hold a retreat in Queensland, I immediately thought: who will look after my husband?

Usually, one of my two adult daughters can help. But with only six weeks’ notice, I couldn’t assume either could step away from her job and own life for five days.

I thought this was exactly what respite care was for. I started looking.

And looking.

My Aged Care’s Find a Provider directed me to services listed as offering available respite for people with dementia (188 homes). I then made countless calls and sent dozens of emails and spoke directly to more than 30 dedicated residential and cottage homes.

I wanted nothing extraordinary – just a good facility where my husband could be safely cared for over the five days I would be away.

I sought a four-star or better My Aged Care rating so I could trust he would be properly looked after. I searched for places offering short-stay residential respite with dementia support and available rooms.

Not one of the listed facilities I contacted had a place for the dates I needed.

But what really surprised me was why – most had no dedicated respite beds.

Instead, respite depended on a permanent residential care bed becoming vacant, and often there was a waiting list for people needing permanent residential care.

I couldn’t book six weeks ahead because no one knew whether a bed would become vacant. Someone would have to leave – or, more grimly, someone would have to die. Only then might the bed become available.

I understand providers must remain viable and maintain occupancy. But for carers, this creates an almost impossible situation.

I need to plan.

A five-day commitment in Queensland requires booked flights and certainty that my husband will be safe – not a hope that a residential bed may open at some unknown time.

Carers should know whether a service has dedicated capacity, how far ahead it can be booked, whether it accepts people with dementia, permitted stay lengths, and what happens when no place is available. Carers should not have to discover these limitations through dozens of individual emails and phone calls.

I also contacted Carer Gateway about emergency respite. Its staff were lovely and genuinely helpful, but the available option was limited to four hours a day during my five-day absence. It simply wasn’t enough.

My husband’s advanced dementia requires supervision and help day and night. Four hours is something, but his dementia doesn’t disappear for the other 20, nor would it allow me to leave the state for five days.

Clinicians and counsellors repeatedly tell me respite is important for me as a carer: I need a break, I must care for myself, and my husband should become used to receiving care from others. But when I actually tried to obtain the respite I am told I need, it was almost impossible.

In the end, I have had to create my own solution. I will take my husband from Sydney to Melbourne, where friends in regional Victoria will collect and care for him for five days. I will fly on to Queensland for the retreat, return to Melbourne to collect him, then travel home to Sydney.

I am incredibly grateful to these friends. But as I organise all of this, I keep thinking: surely this is not what respite care is supposed to look like.

I am one of the lucky ones. I have willing friends and adult children, money for flights, and the education and persistence to navigate the system through the first failed option, the 10th and the 20th.

What happens to the carer who doesn’t have those things? What happens to someone with no nearby family, no money for flights, or no energy to spend weeks searching?

This matters because respite isn’t just about giving carers a holiday.

We want older people to remain at home, yet someone with advanced dementia often can do so only if a spouse or a daughter or son can provide vast amounts of unpaid care. If that carer becomes exhausted, unwell or unable to continue, the arrangement collapses.

Permanent care may then become necessary not because the person with dementia is ready, but because the carer cannot continue.

That is why respite should be treated as essential support infrastructure, not an optional extra.

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.

That means more dedicated short-stay places; transparent, bookable availability; better coordination among My Aged Care, Carer Gateway and providers; dementia-specific options and funding that distinguishes a few hours of help from continuous or overnight care.

I’ve been involved in the aged care system for a little over a year, since my husband’s first My Aged Care assessment, so I don’t claim to know how earlier arrangements worked. But I do know what my experience has been.

Five days shouldn’t take more than 30 enquiries, dozens of emails and an interstate operation involving friends. If we want people with dementia to remain at home, we need to support the person who loves them to keep caring for them.