Terry Kneebone died at 72 last week in hospital with his soulmate Janelle by his side.
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The Howlong man lost his battle with motor nuerone disease without ever having received the level of care promised to him by the government at his diagnosis.
The couple were approved for a three and four-level home care package in November 2014, and while they waited for one to be available, could access lower-level care, which they received just months before Terry died.
Mrs Kneebone believed the support could have made a world of difference for her final years with her husband.
“He was so worried about me and knew I was getting worn out – he used to keep apologising to me,” she said.
“Why did he have to be apologising? He couldn’t help getting this disease.
“He worked hard all his life and all we needed was a little bit of help.”
Mrs Kneebone received a letter in January from the Commonwealth health department advising her of a complaints process, despite previous correspondence with the minister admitting there was a “missing link”.
Three weeks later, Terry was rushed to hospital as he could not breathe.
“They gave him options of going under a mild anaesthetic and he chose to stay alert,” she said.
“On the 5th, he slept all day and then when he woke up we took some photos.
“A nurse from Mercy Hospital came to see us on Monday morning, we told him it was OK to let go and he passed away with us.
“It was very, very hard.”
Terry’s death was met with tributes from truck drivers – he began working in the industry at 22 and was with Lewington’s Transport in Wodonga for 18 years.
He was inducted into the Shell Rimula National Road Transport Hall of Fame in August.
Finally marrying Mrs Kneebone after 23 years was one of Terry’s final wishes.
“I told him I’d wait until he was 70 and no other woman would want him,” she said.
“He had three wishes; one was to go to Temora and say goodbye to the men he worked with, to marry me and to go to Alice Springs to see the truck museum and we did it all,” she said.
“You have no idea how he kept me laughing.
“I could tell you some stories about that man – he was unreal.”