Cariona's Story

Carionaandmum.jpgWhen Cariona’s mum, Lorraine, was diagnosed with motor neurone disease in September 2016, a lot of things changed for the whole family. Cariona and her teenage daughter decided to move in with Lorraine to help care for her as her symptoms progressed.

Being diagnosed at age 74 meant that Lorraine had to rely on Aged Care services for care and support, rather than the National Disability Insurance Scheme which is restricted to those under the age of 65. The waiting list of over 100,000 for Aged Care meant that Cariona’s mum only received her package several weeks after she passed away.

Cariona said: “Mum was fairly self-sufficient until around March 2017, she deteriorated pretty quickly. She was diagnosed with Bulbar Onset MND so she lost her ability to speak and swallow first, and although she was still mobile, we were really worried she would have a fall and not be able to call for help. We got her a personal alarm, but it would take too long for me to get back from work to help her and if anyone else came she wasn’t able to communicate with them.”

“Me and my teenage daughter decided to move in with mum so I could care for her properly, and I was lucky to have a really supportive employer which enabled me to work from home. If it wasn’t for that, I don’t know how we would have managed.”

“We applied for My Aged Care at the beginning January 2017 just a few months after mum was diagnosed but we weren’t given an assessment until late March. That’s a long time for someone that has MND.

“When we finally got an appointment the person that came to see us was an administrator, with no knowledge of MND or the care required. I spent the better part of 2 hours trying to explain what MND is because all the questions for the assessment began with ‘Up until this point have you...…’, which didn’t matter because mum would never be as well as she was that day.”

“Eventually, Mum was approved for a level 4 package but there would be a 12+ month wait for it to be assigned. When I said that Mum could well be gone by then, the woman said that was just how the system worked.”

“Each time mum had a major progression and I called My Aged Care to get an update on the waiting list and each time I was advised to just wait. No one could give me any information despite the fact that mum was considered high priority.”

A report released by the Department of Health showed that at the end of June 2017 there were over 100,000 on the national waiting list for a home care package, with 79,000 of those waiting for a high level care package. The report also showed that 41,000 were receiving packages that were below their level of need.
“We were given a level 2 and then 3 care package until the level 4 became available, which only provided two hours of domestic services per week (level 2) and then one carer for 2.5 hours, two days a week for personal care (level 3). When the support workers did come some of them weren’t qualified to use the equipment she required such as a hoist, so they had to leave.”

“We were lucky to have such strong family ties and support. I stopped working fulltime so I could care for mum with the help of my teenage daughter. We were able to get equipment provided free of charge by the MND Association of NSW and my brother and boss made modifications to mum’s home to meet her access needs. We were really lucky in that respect.”

Cariona’s mum died in September 2017, one year after her diagnosis. Six weeks later My Aged Care informed Cariona that they had been given access to a level 4 package.

Help people living with MND and take action now by using our online e-action to email your federal MP to raise awareness of the issues people with MND are facing and call on Government for changes to Aged Care. All you need to do is click the link below and follow the instructions.

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If you would like to share your story with Aged Care please email us at mndaction@mndaustralia.org.au