Caroline Boileau says she is struggling to get support from the NDIS for her husband. (ABC News: Liz Hobday)
Caroline Boileau remembers her husband, Nick Ellwood, as the funniest man she’s ever met.
“The first time we met, we laughed for hours, and we pretty much haven’t stopped,” she said.
“So even now we laugh. You have to.”
Mr Ellwood was 51 years old when he was diagnosed with posterior cortical atrophy, a rare form of dementia, in 2011.
Over the next seven years the disease would take almost everything — his sight, the power of speech, even his ability to move.
Ms Boileau, a specialist nurse, now administers dozens of medications for her husband and manages every aspect of his care.
“We feed Nick through a feeding tube in his stomach, called a peg, we wash him head to toe, we have to do his mouthwash every hour because he can’t eat or drink,” she said.
“We have to brush his teeth, we have to shave him, we have to change his underwear.”
Because he is unable to cough, Mr Ellwood is often moments away from choking, so that not even a specialist home could provide the level of care he needs.
Ms Boileau said her family is on constant alert, and she survives on very little sleep.
“I never get more than about three hours in a row … I dream about getting eight hours sleep, I couldn’t tell you the last time that happened,” she said.
Ms Boileau said she has been trying to get home modifications and nursing support through the National Disability Insurance Scheme (NDIS) for 18 months.
She would like a sliding door so she can take her husband outside, a bath so she can wash him properly, and support staff so they can get much-needed rest.
But so far they have been disappointed, and after months of dealing with the new system they are exhausted.
“Some days I can’t even have a conversation with people because I’m just so frustrated and I’m just so tired,” she said.
“I’m sick of hearing this is going to happen, that is going to happen — and it doesn’t happen.”
Family waiting for specialist equipment, home upgrades
Ms Boileau said they have had four NDIS case co-ordinators so far and several management plans, but struggled to get information about where their case was up to.
A National Disability Insurance Agency spokesperson said Mr Ellwood’s NDIS management plan had been finalised, and at no stage have he or his family been without NDIS funding.
The NDIA said under the plan, the Ellwood family would be able to access specialist equipment and home modifications — to be installed over the next six months — as well as funding for a nurse who can train a disability support worker to help them.
“The NDIA immediately made further contact with Mr Ellwood’s wife Caroline on hearing her concerns, and has continued to work with the family to address concerns,” the agency told the ABC.
The agency said the size and scale of the NDIS means rolling out the system would not be without challenges.
The burden of caring for Mr Ellwood has also fallen to his oldest son, 19-year-old Max Ellwood, who has spent his teenage years helping to care for his father.
Despite rarely being able to make it to school, the teenager graduated last year, and was accepted into university.
Even now, he misses more than half of his classes, because he is helping care for his father.
“Year 12 was probably the toughest year of my life, I just really struggled getting there every single day,” he said.
Max Ellwood said his father is his best friend, and described the loss he feels watching him gradually lose his cognitive abilities.
“He could say something and then I’ll never hear that again,” he said.
“I think about when was the last time he said my name — I think it would be well over six months.
“Just stuff like that, that I took for granted … it’s really hard not to hear that anymore.”