Retired CSIRO scientist, Julie, found getting her husband into dementia care a gargantuan challenge – informed reform means hard truths must be heard with humility and resolve

Julie is ready with a laugh, both at herself and in recalling the things she’s gone through. Good-natured, practical and diligent, Julie earned her way into the CSIRO. Working hard to further Australia’s excellence in the sciences, while also raising a family along with her husband Graeme, she is certainly capable. With the usual hiccoughs and bumps along the way with juggling a career, raising spunky mini-humans and living life, it was when Graeme started to decline mentally that would see Julie face a series of seemingly relentless challenges navigating caring for her spouse and the aged care system. Her greatest shock was in the degree of struggle when it had only been presented to her as a straight-forward process.

Hard conversations must be heard from every-day Australians navigating the system as it is, not from the brochures, not from the ideals but from the reality of what it actually takes to get a loved one into care, particularly at short notice. For Julie, when calling providers for a place for her husband, the task had been framed as easy as one, two, three. Far from it, Julie found getting her husband into care was about as straightforward as the frontier science she had tackled in her working years but without the roadmap of university, without the support of colleagues. The experience of Australians on the ground, in their homes and limited resources, must be the first to shape policy, for when it comes to shining a light, it’s worthwhile to start with those most confused in the dark.

Understanding strange

Julie and Graeme had always been go-getters. Both active with a love of the outdoors and exercise, at home in Australia they’d regularly be found in national parks on picturesque hikes, or kayaking on Sydney’s many rivers and bays. It was on a trip overseas that Julie started to notice the changes.

The changes weren’t mental initially. Far from neon lights blinking, ‘dementia is here, prepare’, Graeme had only been working with a cardiovascular doctor for his heart, and she knew he’d need further care in that area. While they were overseas in Italy, he had collapsed. He had been taken away for medical treatment but it was when he returned to her Julie noticed, “he wasn’t quite with it.”

A few months later, they were in traveling in eastern Europe and his behaviour had further changed, “there I had to be careful in getting him back to our room, he had started to do funny things like going to the wrong room, leaving stuff, he lost all sense of direction and forgot how to use a phone.”

“He had once been so very good at directions but then he started being adamant about getting on a bus. It started to very much be the wrong bus.”

“It developed quickly, from being vague, he’d never had a good memory, so that wasn’t an obvious first sign, it was more the numbers and directions, that he had been good at, that was a noticeable sudden decline.”

“He had always loved sudoku, and when he couldn’t do that anymore, I thought that was really strange.”

Difficult to manage

In hearing Julie’s story, it is worthwhile to note that her needing to manage and cope did not start when Graeme was needing complete care. To delineate a person’s interaction with aged care only when needs reach an extreme point is to miss most of the exhausting journey getting there.

After their holidays in 2017 to eastern Europe, in 2019 they went to the Kimberley. Julie shares what thousands of Australian loved-one carers have been through, love and sheer will cannot shoulder the difficulty of managing a declining loved-one.

“He was quite difficult to manage. It was an organised trip, so I could sort of direct him, and I had to make excuses for him, that sort of thing. It was becoming awkward. I couldn’t let him drive. So I drove and we went off on our own a bit.”

Stories must lead to strategy

Julie is generous in her openness about this vulnerable part of her and Graeme’s life. Through her openness there must be a space to hear these hard conversations and truths by all, government, provider leadership and front-line staff. Hearing real stories is where sympathy can supercharge strategy that lands in reality.

A key element missed in macro-policy of aged care support is noting that in decline there are countless awkward in-between moments. While managing a loved one with dementia can be heart-wrenching from sadness, it can also simply be painfully awkward, and immensely exhausting from trying to constantly manage fallout. Things are changing, for the person and their loved ones.

Far from the glossy brochures is the reality of what it is to stand-by someone as they decline. On their trip in the Kimberley Julie recounts, “when we were on our own in the Kimberley, he went up to a person in a campervan and accused him of stealing his van. Graeme was powerfully assured of his truth and anger towards the man, he really believed it was his van.”

“It was things like that, that made it really unmanageable.”

Julie needed to not only know where Graeme was at all times, but manage the fallout when he forcefully accused other people of theft, and ruffled feathers. It was not just the physical needs of looking after him, but being a full-time PR crises manager.

“Reneged”

For Julie a reality that exacerbated difficulty is that Graeme was and is tall, strong and fit. He was 100kg of height and muscle, “he was a strong and fit man, he wasn’t unwell in any way other than his mind, it just became more and more difficult.”

Coping meant further family being pulled or stepping in, “my son came home to look after him with me, to give me a break and to keep me safe.”

“But you know, mostly it was getting him up off the floor when he was refusing to get up, he just didn’t want to get up. On a bushwalk he would suddenly sit down and say he wouldn’t go on.”

“And finally when we reached this level, I understood that we needed respite care, I did understand that then we would be in for the factory line of care, where permanent care would then be expected for him.”

Julie describes the straightforward ‘a,b,c’ of what had been presented to her as the expected factory line of respite care to permanent care, and how the cracks started to quickly rise to the surface.

“Five years ago he first went into respite care, they said they’d take him on permanently but after six weeks they reneged.”

Julie remembers, “they said that he’d got into a computer in the unit, and then he broke a toilet trying to fix it, and he would disappear and get on trains and they said they couldn’t handle him.”

Suddenly what had been presented as the next phase of his care, from the support of the system, was un-promised. And Julie just had to manage.

“Not suitable”

Julie started to twig to the fact that you needed to have options because you couldn’t trust that the process, the system couldn’t be relied upon.

“I started ringing around to different providers, HammondCare had a great daycare that I’d heard about, and after a lot of persistence and paperwork he got in there but a pattern emerged, once Graeme started, instead of being there for the day, I’d get a call two hours later saying he wants to go home, and that he’s climbing the fence, or pulling the door off.”

“They said, he’s just not suitable.”

Julie shares, “that became the story for most respite centres, that they’re simply not secure, they’re not geared for strong people, especially a strong man.”

“The respite care seemed increasingly simply not secure, if they could figure a way to get out, they weren’t secure enough.”

“We won’t keep him”

“When you’re looking for respite, you’re totally on your own. You just get a list of places you have to call, and it’s horrible.”

Julie recalls that she was put in touch with some aged care helpers but they were only able to do what she had been doing, calling around, “and you’d found that they’d only called a place you’ve just called and has told you they don’t have a place, or that they couldn’t handle Graeme.”

Julie too, found that the list of providers, while seemingly a lengthy one, belied actual opportunities, “some of them are under an umbrella group, or they don’t do dementia, or ‘oh our parent group does that in South Australia’, I didn’t find it helpful at all.”

After hours and hours on the phone, after persistence that came from, as Julie good-naturedly recalls “a place of near insanity to simply keep calling hoping for a different result”, she got him into a care spot right around Christmas.

“He was there for six weeks, right around Christmas in 2021, he had been accepted in respite care with the provider saying they’d be able to put him in permanent care just after Christmas.”

Julie shares, “On the 9^th of December he was meant to go into permanent care.” But it happened again, “they rung up just before the 9^th, we just can’t manage him and we won’t keep him.”

A fractured system

Problems with getting seniors into aged care is not limited to aged care, the fallout touches other critical sectors.

“I was desperate, how could I take him home, when a secure respite care can’t look after him, how could little old lady me look after him.”

This is the reality of hundreds of Australians across the country. A phone-call out of the blue, after plans had been set, feeling the phone in your hands and terribly loud silence that matches what is before you, to manage on your own.

Julie was shocked to hear of advice sincerely given by a nurse then, seeing her desperation they said to her, “look, what you’ve got to do is take him to emergency care and leave him there, and say you can’t look after him, that you can’t take him home.”

“Where’s civilization gone when we get to that stage? The hospitals shouldn’t have to do that care.”

For her own safety, Julie recalls, he gave that advice, that heart-wrenching, impossible, awful-choice advice, “he was worried about me, he didn’t want Graeme to go home with me.”

“Beside myself”

“Graeme was refused care, and they said you have to take him home, well you can imagine, I was beside myself then”, Julie says.

“All I had was this list to ring.”

“Most places I rang”, Julie recalls, “they said they didn’t do dementia care.”

Julie had heard that HammondCare did great dementia care, and so she tried to ring then, it was a game of persistence, they wouldn’t commit to saying they had a place but Julie, through her desperation kept ringing, they told her, “there may be a place out in Liverpool.”

Nearly two hours away from her home, Julie says, “as an older lady, I can’t go out there for a day regularly, it’s too hard.”

The struggle to age in place is prevalent, and for loved-ones to find places to have their seniors needing care near them sometimes impossible, the supply simply is not there. “It’s got to be somewhere where it’s close enough where you can drive safely. You want to be able to get there quickly if there’s an issue.”

“You have to push”

What is not on the brochures, what is not in public sector messaging, is the almost Olympic efforts of pushing that is sometimes required to find good fits for loved-ones.

“You have to really, really push.”

Julie recalls, “someone had told me, look don’t get to the stage where you are crawling around on the ground crying, trying to keep your person at home.”

“I knew you had to push but I never knew it would be so hard, that it would be doors closed.”

“Thought I’d won the lottery”

Julie muses that it was down to sheer luck and a personnel change that meant a few weeks later HammondCare offered Graeme a respite spot.

“They offered him respite care and I thought I had won the lottery, he went in there late December, I thought the care he got there was wonderful.”

“They had a big garden he could enjoy”, she remembers

But the problems started, “he started to refuse to shower” and Julie was bracing for a repeat of the “this isn’t working” all over again.

Yet seemingly her luck held, “dementia Australia came into my radar, I got the most wonderful caring and well-trained personnel.”

It is here that Julie’s story shows how sometimes the system’s fault-lines mean stepping up again as a loved-one. As Graeme was in respite care, it was set up for those that needed less intensive care and yet Graeme was declining, particularly behaviorally, quickly.

Julie found that she needed to bring in outside help with his care, she needed to be the manager of his higher needs care. She is incredibly grateful to the Dementia Australia carer that came in, particularly due to how well-trained she was, to support her in being able to shower her husband.

Then the shoe dropped, “they said they couldn’t keep him, ‘his cares went above respite care’, that I would have to bring him home.”

Luck

“This was right on Christmas when they said I’d take him home again, I had been flabbergasted, no one’s open I said, all the units were saying ‘we don’t do dementia’ and ‘due to COVID we’re not taking anyone.’”

Julie groundhog-day seemed to just keep on rolling. And then it seemed her luck came in again, due to another flare-up on COVID, no new seniors were being accepted into HammondCare’s permanent dementia care and, “they could squeeze him in because they couldn’t take anyone new, I was over the moon.”

Through hearing Julie’s daily tenterhooks of waiting to see if Graeme would be rejected, because he was too much to handle, to feeling insane by needing to continuously ring up to see for places and to push, push, push, fault-lines in aged care are glaringly obvious.

Advocates, and sincere provider leadership are adamant, luck and squeezing someone in has no place in caring for the vulnerable seniors in Australia. Providers and loved-ones alike do not want to be in this position. Reform must acknowledge and meet the systemic weak-spots.

Julie is clear, she is profoundly impressed with Graeme’s care at HammondCare now, and notes both were caught within a system. The provider simply initially had no permanent beds, and Julie, no options; A bleak fault-line that demands lift from government and cross-sector leaders alike.

Dementia can be physically strong

At the core of Julie and Graeme’s struggle is a system that does not cater to, is not created around, physically healthy and robust adults with dementia. She laughs that if it had been her, “a little old lady”, the struggle would have been completely different.

“It is a problem with physically healthy and strong older people, places just aren’t geared for that.”

Julie says, “when he first went to the respite day care program, I had told them he liked walking, Graeme and I would regularly do a 5km hike, so the carer thought she’d do a nice thing and take him out walking on the suburban street, well he saw the fire trail and took off to Bobbin heard.”

“She had to call the police. The carers sometimes aren’t fit, or are so used to people who just want to sit down and have a cup of coffee.”

When it came to support at home Julie shares another problem with the system, “they’ve come out for two hours, what could they do with him in two hours, like an outdoor activity that he loved, or for me, how could I go for a swim in that time?”

“They only thought, ‘oh you’ll be able to get your hair cut, or go for a coffee, ridiculous to think I only wanted that”, Julie says.

“I just wanted a proper break.”

Resources for an awkward and tiring reality

Julie, through going through the process of experiencing Graeme’s decline, and navigating the aged care system discovered its weak spots.

In wanting to improve the system, it is imperative that from the day-to-day, from the trenches of those who are trying to figure it out on their own, that reform pivots.

“I didn’t realise the dimension of looking after someone with dementia 24 hours a day when you don’t have physical or mental control, that he could go out and catch the train, he once took our campervan and drove all around the city.”

Julie only found out through a fine, “one day I got a fine for driving in Five Dock, it had been Graeme, driving through a red-light.” She highlights the awkwardness and fear of sometimes not even knowing that you’ve lost your loved one with dementia, and how dangerous that can be.

As things worsened with Graeme’s care, Julie highlights that one her son was able to step in and help, physically and financially. She worries for those without children, “what would you do if you don’t have any children, it’s just unimaginable.”

She has relied on her son to tackle the other daunting mountain of aged care, how to pay for it. She remembers that after fuddling and muddling through the reems of paperwork, battling through the labyrinth of, “whatever that My Aged Care is”, you get to people, “who are terribly kind but can’t give you any financial advice.” People are yet again largely on their own, or vulnerable to, as Julie puts it, “dodgy private financial advisers.”

“You’re left to work it out…thank goodness I had my children as a backup, that if I lost my faculties they could step up.”

Supporting the sector for more capacity

Julie, ready with a chortle and honesty, shares her story without the intention to disparage but direct. Reform must happen from hearing about what actually happens to people when trying to claw for aged care help. The fact that they need to push and claw indicates a key problem. And at the same time, she recognises the difficult position so many provider leaders and staff are in.

“I needed confidence to argue with a strong person”, Julie says, and acknowledges, “and that strong person was just doing their job, who is managing the fact that their provider-employer simply doesn’t have room. They are at capacity.”

She nails it on the head, what countless provider leadership have agonised over, the need to work within tight budgets, with even tighter bed numbers, keeping operations running in an industry that has struggled with new investment and funding to meet the incredible needs approaching its doors.

Julie is pragmatic and understands, “they can’t be caring and sharing in those moments.”

“They have to be really tough in heart-rending circumstances, where they have to turn people away, it must be so hard to do.”

Julie muses, “for many, they must get brutalised.”

Change

Julie’s story is important. It’s important because it’s how the system has played out for an everyday Australian. Julie found that she needed to weather reneging promises, desperate situations and meet it with fantastical resolve and perseverance.

Julie puts it down to “pushing and shoving and luck” that got Graeme into care. For so many that don’t have the energy, or education, or stamina to keep pushing, and luck doesn’t seem to show, this is too high a bar. For the providers that are frustrated at not being able to accept more places due to constraints, and inability to break ground on new builds, funding and low-interest loan opportunities must be re-thought at a national level.

All parts of the system must work so that there are places for those that need them. Aged care must be sustainable, in cost to the tax-payer, in places for seniors, in the now and in the decades to come. This will involve reform far outside of just aged care.

A coalition of government, non-profit, for-profit, healthcare, industry leaders and advocates must be ready to have the hard conversations. Through truly listening with humility and responding with resolve, energised, brilliant minds can safeguard a core pillar of Australian life, ageing with dignity and not having loved-ones irrevocably drained getting there.

Most importantly, this cannot be an ideal, it must work in reality, for people like Julie and Graeme.