Carers’ evidence on aged care
“When Mum dies, I will know I’ve done everything I possibly could.” This was the response from Bonney Dietrich – one of many witnesses called before the Royal Commission into Aged Care Quality and Safety – when asked about the benefits of caring for her mother Beryl herself , rather than placing her in a nursing home.
While many of the commission’s hearings to date have focused on problems within the aged care residential system, this week’s hearings in Mildura took pause to highlight the experiences of those who choose to care for elderly family and friends in their homes.
The evidence to the commission was clinical in its assessment that caring is associated with an array of detrimental impacts to one’s health, finances and employment opportunities. Catherine Thomson, research fellow from the Social Policy Research Centre at the University of New South Wales, said that “carers have much lower social and emotional wellbeing compared to non-carers”, adding that the impacts were often worse for women.
“As women undertake the largest share of unpaid caring work, women disproportionately experience the financial impacts associated with caring. This is compounded for carers who also take on childcare responsibilities throughout their lives,” Thomson’s joint submission with colleagues Dr Trish Hill and Dr Myra Hamilton read.
“They [also] often prioritise the health needs of the person receiving support [rather] than their own needs,” Thomson told the commission .
The findings of Thomson, Hill and Hamilton’s research were mirrored in the evidence of Nicole Dunn, who in 2015, at 32 years old, moved in with her grandmother after she was diagnosed with pancreatic cancer, and cared for her for the next 18 months. Initially, Dunn continued to work full-time, but she eventually had to move to part-time after experiencing stress and what she described as “carer fatigue”. Dunn’s grandmother Roma passed away in 2017.
Like Dietrich, Dunn reflected that the decision to look after her family member in the home had been an easy one. “I couldn’t see it any other way. My dedication was about looking after my nana,” she said. “I wanted, but also needed, to do it.”
Nonetheless, Dunn admitted to a range of impacts on her social and emotional wellbeing, painting a picture of a shrinking world with fewer social engagements and the “devastating” grief of her grandmother’s deterioration.
“Socially [my life] changed quite a lot… what my friends were doing was quite different to myself, in that they had a lot of freedom and could socialise quite regularly whenever they wanted. A lot of that, really, stopped for me. My caring responsibility came first, that was more important,” she said.
“I would say I didn’t consider [my life choices ] because that was not what was important to me… so if that meant that my social life was to be impacted, so be it. If work was impacted, so be it. Even if my own health was impacted, so be it.”
Dunn broke down just once during her testimony – when asked to describe when her grandmother’s health declined to the point that she had to be placed into a residential aged care facility.
“I probably grieved as much at that point in time as when she passed away. I was just so used to having her there every day,” Dunn told the commission. “I was so used to doing everything for her, and then, it was just so quiet.”
When the royal commission held its Maidstone community forum in May this year, I too had applied to be a witness. Like Dunn, I was one of several family members, including my two sisters and Mum, who last year took turns looking after my grandma in her own home. We did so with the intention of trying to delay, as long as possible, her move into an aged care facility. Just days before the forum, my grandma had a stroke and died two weeks later in a nursing home.
My grandma had advanced Parkinson’s, as well as dementia, and needed assistance with every aspect of daily life, including using the toilet and bathing. She had frequent hallucinations and was also delusional, at various points thinking the progression of her disease was a symptom of us poisoning her. This was the most heartbreaking aspect of her disease. With the encouragement of her GP, we hoped that under the frequent medical supervision a nursing home could provide, her emotional state might improve.
In reality, it had the opposite effect. Within two weeks of moving into respite care, she went from having very limited mobility to none at all. She was put in a “princess chair”, a permanent recliner for residents who are immobile, where she remained. Though she wasn’t incontinent then and could still tell you when she needed to go to the toilet, she was put in nappies. I told the care staff of this, but they would often reply that they had no time to take her to the toilet. All the while my grandma would cry and yell in pain to no avail. I found myself feeling more helpless than I did when caring for her alone at home.
Eventually I made a formal complaint to management, emphasising my belief that these issues were not the fault of individual carers but of systemic problems including lack of resources, limited specialised dementia training and low staff–patient ratios.
Of a night, 19 residents with dementia, most of whom needed assistance with feeding, regularly had just two care staff in attendance. Both staff were required to do any lifting of patients into bed or to the toilet, leaving the rest of the patients unsupervised. At times I witnessed staff bursting into tears, overwhelmed by the weight of caring for high-needs patients. Some implored me to complain, telling me management would listen to families but never to carers.
To an extent, the staff were correct. This first in a series of complaints led to changes to my grandma’s care, including a toileting “schedule” that was printed and stuck on her door. But management refused to accept this was a systemic issue, or to permanently put on more staff. None of the underlying problems I had identified were solved. Instead, they threatened to withdraw my grandma’s offer of permanent care.
This is not a unique story. At its recent hearing in Cairns, the Aged Care Royal Commission delved more deeply into the problems with residential aged care facilities. The proceedings included telling testimony from Dr Jennifer Abbey, a retired registered nurse and consultant for the app PainChek.
After working in the industry for many years, Abbey told the commission she left her job because of the toll it had taken on her. “It was really sad and quite morbid to go there [to the facility],” she said. She went on to describe being actively discouraged from forming relationships with residents, while she described frequently making complaints to management because of “residents not being treated with dignity and respect”.
Such complaints, she said, simply weren’t addressed. Meanwhile she witnessed instances of rough handling and “staff telling residents to wait because they were doing something else that was obviously not as important”. Many times, she said, staff simply wouldn’t give residents the time of day, “like they didn’t matter”.
Asked if she had identified shifts in aged care that had contributed to this problem, Abbey was resolute that the corporatisation of aged care in Australia had played a key role.
“It has changed enormously from what it was, if you like, a cottage industry – from small organisations often run by ex-nurses, converted houses, to complete corporatisation. And now we have got what seems to be, to many people, a profit-driven, industry-driven organisation that is employing people on very low wages.”
Many Australian families are choosing to delay placing their loved ones into aged care for as long as possible – despite the psychological and financial cost.
According to peak body Carers Australia, there are about 2.7 million unpaid carers in Australia. Many primary carers are women in their 50s, although it’s estimated that one in 10 people caring for a family member is under 25. In economic terms, the impact is stark with the median weekly income of carers at
42 per cent lower than that of non-carers.
At the Mildura hearings, the formation of the National Disability Insurance Scheme (NDIS) and changes to mental health funding were also cited as reasons “some support services that might otherwise have been there for carers had disappeared”, further compounding the issues testified to.
The chief executive of Carers Australia, Ara Cresswell, told The Saturday Paper the evidence presented by carers at the hearings had been “at times quite harrowing”.
“The strongest themes to have emerged … are the failure of the aged care and health systems to adequately support carers of the aged,” she said. “These stories are even more poignant because the commission drew out carers’ stories of the loving and happy relationships enjoyed with those they have ended up caring for before they had to confront the inevitable decline of that person, [as well as] the impact on the quality of life of both the carer and the person being cared for.”
Cresswell said a key issue for the commission to address was that the NDIS does not adequately cater for the needs of carers, including improved access to aged care respite and to Home Care Packages.
“Like the aged care system, the disability support system would be totally unaffordable without family carers,” Creswell says. “Indeed, carers are the backbone of aged and disability support.”
This article was first published in the print edition of The Saturday Paper on Aug 3, 2019 as "Past caring". Subscribe here.