Car­ers’ ev­i­dence on aged care. Kate O’Hal­lo­ran

Ev­i­dence to the Aged Care Royal Com­mis­sion res­onates for Kate O’Hal­lo­ran, who was part of a fam­ily team look­ing after her grand­mother in her own home.

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“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.”•

A pho­to­graph of Ni­cole Dunn and her grand­mother Roma pre­sented to the royal com­mis­sion in Mil­dura this week.

KATE O’HAL­LO­RAN is a free­lance jour­nal­ist and re­search fel­low at Vic­to­ria Univer­sity.

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