Milou’s story

“I won’t pretend it’s easy, because it definitely isn’t,” says Milou Barrett, whose husband of 16 years, Tim (61), was diagnosed with dementia mate wareware in 2021. 

“Sometimes in life you get dealt a difficult hand and you just have to adapt and learn how to play it.” 

While Tim’s formal diagnosis came in 2021 when he was just 56, Milou knew something was going very wrong with her husband well before that. 

“It was – it still is – a tough time.  I didn’t know anyone with dementia and I had a lot of learning to do in the early stages. 

“I found it critical that I had a good understanding of what was happening to, and for, Tim, and how to support him and our two young boys.” 

Tim now has a carer in twice a week who does puzzles with him or goes walking with him, although he doesn’t really know why she’s there.  He thinks the carer is one of Milou’s friends. 

He also goes to the Alzheimers Taranaki day programme once a week. 

Even that’s a bit tricky, says Milou.  “Tim still has no insight that he has dementia, he doesn’t understand what’s happened to him, so he goes to the day programme as a ‘volunteer’. 

“He still talks about what he plans to do when he’s 85 and he talks about buying the next door farm, where he spends some time weeding.” 

Tim’s also very community-minded and likes picking up rubbish around the roads in their rural community of Oakura, just outside New Plymouth. 

But Milou says he’s not always safe doing that and she wanted him to wear a hi-vis jacket, a goal she achieved after writing a letter to him, purportedly from a “a grateful community member”, in which she encouraged him to wear it. 

“You find ways and means.  You have to think outside the box.  I’ve learned a lot about myself on this journey and my goal, and that of our boys, family and friends, is for Tim to keep living his wonderful life in his dementia world.” 

A former teacher, Milou had to give that job up to help support her husband and family.  She gets support at a Young Onset Dementia carers’ support group once a month. 

She says it was a tough call, but sometimes she’d come home from work and find Tim on the roof, or trying to use a skill saw and she knew he needed full-time care to keep him safe.   

“We’re on this journey together as a family and we have to make the best of it,” says Milou.  “As I said, it’s not easy, but I think we do a pretty good job, and as long as Tim’s is as happy as he can be, we’re all good.”