In 2021, Narelle Houlcroft was diagnosed with MND. Her husband Tony became her carer, as MND took more and more of her physical abilities and changed any plans they had for their retirement years.
Tony said Narelle essentially needs a full-time, live-in carer- he is there to assist her for much of the time, but her NDIS package means he's now got the assistance of support workers a few hours a day.
"Over time, her symptoms started getting more serious. It keeps ramping up, and so does the time required to help her do things - and you can't do it all yourself;' Tony said.
"Narelle doesn't always need help, but she needs someone to be actively caring or on standby for the day."
"It is a fulltime job but it's a labour of love. She's very fair with her requests and balancing both our needs."
Tony said being a carer was 'not just about the obvious immediate things-you've got to anticipate future things like fatigue levels' for the person living with MNO you're caring for.
"We're a short roll to cafes, and the beach, so we love to head out when the weather is good. But it'shard to plan t hings too far in advance, as when the weather is cold, people living with MNO like Narelle get cold easily as it's harder for them to regulate their body temperature."
"We've thankfully got good friends who keep in touch and understand when we can't always catch up with them."
It's been a big change for both Tony and Narelle, previously they were active and enjoyed their hobbies, and Tony is thankful for the time they spent together enjoying the sights and sounds locally and globally.
"Before her diagnosis, we enjoyed hiking, cycling, and were able to do some travelling overseas - including a yoga retreat in India, and hiking in Nepal," Tony said.
"Narelle goes to physic a couple of times a week with her support workers. Part of my time to myself is during her physio sessions. We also both see our daughter and grandson whenever we can."
To keep his physical and mental health in shape so he can be there for Narelle when she needs him, Tony takes moments now and then to exercise. "Narelle and I used to do yoga together, I've kept on doing that as it's been good for my mental health. Every few weeks I do some bushwalking, and I've also been going to the gym and sometimes have a chance to have a coffee afterwards," he said.
Another aspect of helping mental health is to have the odd getaway to catch up with family and friends.
"With her support workers, we've been able to arrange for me to have additional time off, so now one day each week her support person stays a bit longer."
"We've recently set it up so that every 4 weeks, we've arranged it so she goes to physio and then has someone stay overnight to care for her. So I choof off and have little overnighters with family and friends, I've been to my daughter's place and helped with the gardens, and have been able to go to Tea Gardens with my brothers. We stayed at the pub and saw the sights, watched the footy and played trivia."
"Narelle is very capable mentally, our daughter is nearby, and she has good support workers. Now I can have a little break - a bit of time to look after myself and just be in the moment."
