A day never goes by when Arthur Kirby doesn’t regret the decision to place his wife Robin into respite care at Opal Aged Care in Bomaderry.
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He’d cared for his wife of 56 years for the past eight years as Pick’s disease, an aggressive form of dementia, took hold.
In December 2017, she developed a urinary tract infection and Arthur decided a two-week stay at the aged care facility would see her course of antibiotics administered and would give him a break from the exertions of being Robin’s primary carer.
She was admitted on December 19. The summary of care from Shoalhaven District Memorial Hospital described her as “very comfortable at rest with normal vital signs. Chest was clear and abdomen soft with some tenderness in the suprapubic region.”
Seven weeks later, on February 5, 2018, Robin was dead, struck down by hypostatic pneumonia, a disease associated with invalid and bedridden patients.
Stunned by her sudden death, and determined to get to the bottom of it, Arthur began a lengthy battle with Opal Aged Care to have her care notes released to him.
The corporation initially told him the notes were its property and would only be released by way of a court subpoena. For weeks, he went from agency to agency, trying to force the hand of Opal.
“All I wanted was truth and justice,” he says, stifling sobs. He is man who was clearly devoted to his wife.
Only after the intercession of the South Coast Register, Opal changed its tune and said its legal counsel had instructed the records should be made available to the executor of Robin’s will. The executor was Arthur.
The unnecessary fight for the records simply lumped one trauma on top of another for the 82-year-old.
“What I went through just to get Robin’s records was horrendous. To be asked for subpoena, I should never have been put through that,” he says.
Those records raise serious questions about the care Robin received when she was in the care of Opal.
On the day of her death, at 7.47am, the doctor’s note says: “RLL chest infection, possibly pneumonia.” There is a prescription for Zinnat and Rulide followed by “D/W [discuss with] spouse re advance directive and decision to transfer to SDMH [Shoalhaven Hospital] for CXR [chest X-ray].”
At 6.33pm, just 11 hours later, another doctor’s note says “End stage hypostatic pneumonia. D/W spouse palliation with Morphine, Midazolam and Buscopan as charted.”
Then, at 9.33pm: “Ceased breathing @ 9pm”. And: “Hypostatic pneumonia 1 week.”
There is no mention of pneumonia anywhere else in Robin’s records.
“In a matter of 13 and a half hours Robin went from possibly having pneumonia to dying from hypostatic pneumonia which she’d had for a week,” Arthur says.
“The first I knew about pneumonia was when I saw it written on her death certificate.
“I want the truth. Why wasn’t Robbie in hospital to save her life? It’s unforgivable.”
The decision to send her to the nursing home will haunt Arthur for the rest of his days.
“We’d made a pact that as long as I was alive she’d never be put into a nursing home,” he said.
“She was only meant to go in for two weeks but ended up staying for seven.”
Arthur suspects his wife’s decline from December to February was because of the regime of care to which she was subjected.
On the first morning he visited, he was horrified to find his wife confined to a “tub” or “comfort” chair, a device for the immobile.
“It was the start of the nightmare,” he says.
“I made it clear from the start that I didn’t want her in one of those horrible contraptions.
“They never took my concerns into consideration.”
The physiotherapist note from December 20 reads: “Robin is to be transferred with full body lifter yellow medium arjo toilet sling to comfort chair, so she can be supervised. May go for short walks with Ax 2 physio staff and pelican belt.”
Arthur cannot understand this assessment. He had managed on his own to ensure Robin was walked daily. The slings and lifters would have terrified his wife, he says.
“I never had the opportunity to tell the physio staff about how best to manage Robbie’s care,” he says.
“They wouldn’t even let me show them how I got her out of bed every day. If they had, she would not have had her stay prolonged.”
Before she was admitted into Opal, Arthur cared for Robin in a two-storey home in Callala Beach.
Every day, he managed to have her walk at least 25 metres before settling her in a lounge chair.
“Pick’s disease is a terrible thing. It takes things away from you, simple things like being able to cough. Robbie had no short term memory, she couldn’t blow her nose – she forgot how to.
“She never lost her ability to read, nor did she lose her ability to understand. She lost her ability to talk. Our communication was by eye contact, a look, a smile.
“These people didn’t understand that because I never got the opportunity to tell them.”
Every morning Arthur would manage, with gentle reassurance, to coax Robin up out of bed. He’d clear her upper respiratory system of mucus by gently patting her back and chest. He’d wash and dress her unassisted.
He says he knew better than anyone the best way to care for his wife but insists no one at the nursing home would listen.
“They used the tub chair simply because they didn’t know a better way to manage Robbie because they didn’t discuss it with me.”
Arthur suspects the care given to his wife contributed to her growing immobility, prolonged stay and ultimate death.
A physiotherapist’s note on January 10 says: “Unable to walk Robin in pm [afternoon] as resistive and wanted to sit down as soon as we stood her up. Knees bent so sat back down in comfort chair and positioned for comfort.”
Arthur maintains he kept telling the physiotherapist that he could coax Robin to walk but was not allowed to show her how.
“She just needed coaxing and reassurance being in a strange place.”
There are other serious questions Arthur wants answered from his reading of his wife’s care records.
He wants to know why on February 3 the doctor’s note states, in part: “no effect from Sinemet Rx cease Sinemet trial”.
Sinemet is a drug prescribed for the treatment of symptoms of Parkinson’s disease, including muscle stiffness, tremors, spasms, and poor muscle control.
Arthur says he was never advised she was being given the drug.
“Why was this done without my knowledge or approval? I was Robbie’s husband, guardian and carer.”
He wants to know why he managed to ensure Robin got more exercise when under his care at home than she did at an aged care facility.
He wants to know why the first he heard about pneumonia was on the day Robin died.
Why was the disease not picked up beforehand and treated?
“I was Robbie’s primary carer for eight years but I was never consulted about how she should be cared for.
“I managed for eight years to look after her. She would still be alive if she had been properly cared for in that place,” he says.
Shortly after being approached by Fairfax Media, we put a long list of questions to Opal Aged Care.
Those questions were sidelined by the discussion of who had rights to Robin’s care records and remain unanswered. This is despite an assurance on May 17 that the answers to our questions would be forthcoming.
Gilmore MP Ann Sudmalis took the issue to Aged Care Minister Ken Wyatt.
Meanwhile, Arthur Kirby has lodged complaints with the Aged Care Complaints Commission and the Health Care Complaints Commission.