Alison is allocated 35 Government-funded respite days each year to give her a break from caring full time for her husband, Neil, who is living with Alzheimer’s disease. Most years, she manages to use just five or six. Sometimes, it is as few as two.
It isn’t because Alison doesn’t need the respite. It’s because finding somewhere for Neil to go can be extraordinarily difficult.
The couple have been married for more than 50 years and built a life shaped by travel, teaching and adventure, visiting more than 90 countries together. Neil, a former civil engineer and Mensa member, still completes cryptic crosswords, but increasingly relies on Alison to manage daily life and navigate the health and support systems around them.
Getting Neil diagnosed took close to a year. His intelligence meant he performed well in standard cognitive tests, even as Alison could see clear changes in his judgement and processing. The experience taught her to be persistent, keep detailed records and trust what family carers observe behind closed doors.
Since Neil’s diagnosis, Alison has worked hard to keep their life as normal as possible. Day programmes and carer support groups have made a significant difference, but regular respite is also essential.
“Respite is incredibly important because you need that time to recharge your batteries,” Alison says. “If you’re tired, or you’re in pain yourself, everything becomes so much harder.”
Alison knows that first-hand. When she recently injured her back, the physical and emotional demands of caring became significantly harder to manage.
Alison is allocated 35 Government-funded respite days each year, intended to give her time to rest, attend to her own health and continue caring for Neil safely at home. But having respite allocated and being able to access it are two very different things.
In practice, she is rarely able to use them. In most years, Alison accesses only five or six days of respite, and sometimes as few as two. She has tried to book care 13 months ahead, but says she has found only one local facility where planned respite can be booked in advance, with one dedicated room available. Other facilities may accept short stays only when a permanent bed happens to be vacant, require longer minimum stays, or charge additional daily and premium-room fees.
“I’ve tried to book 13 months ahead. You can be allocated 35 days of respite, but if there isn’t anywhere available for your partner to go, you simply can’t use them.”
The uncertainty makes it difficult to plan a meaningful break, a holiday or even medical treatment. Respite itself also takes preparation – particularly the first time – with medication, clothing and care requirements needing to be organised before Neil goes into a facility.
For Alison, that makes a two or three-day vacancy difficult to take advantage of and often too short to provide the meaningful break she needs.
She says the issue is particularly significant for families who cannot afford to arrange private care when funded respite is unavailable.
“Some people can afford private care, but a lot of people can’t. There is an equity issue there. If support has been allocated to a family, they need to actually be able to access it.”
Alison wants to care for Neil at home for as long as she safely can. For that to happen, she says family carers need reliable support before they reach crisis point – not once they are already struggling to cope.
“If someone has been allocated respite care, they need to actually be able to use it. At the moment, that isn’t always possible.”
For Alison, accessible respite isn’t a luxury. It’s part of what makes continuing to care for Neil at home possible.
