My husband survived Afghanistan then got dementia at 38

Now his family want to raise awareness

Susan’s husband Jason was always such an extrovert and larrikin. Then one day everything changed.

Here, Susan tells her story in her owns words..

‘My gag worked brilliantly,’ my husband Jason grinned when he got home from work.

‘What did you do?!’ I asked.

‘I sprinkled talcum powder on the overhead fan and when the guys switched it on, the powder went all over them. It was hilarious!’

‘Oh Jason!’ I laughed.

A goofball with a huge smile, Jason was an extrovert and a larrikin, who loved making people laugh.

He was also the first one to help out someone in need and a devoted, protective dad to our three girls, Emma, then nine, Rosalie, seven, and Madeleine, one.

A solider in the armed forces, he was passionate about serving his country.

Jason was continually being posted around the country and the girls and I would always go with him. It was fantastic to live in different parts of Australia.

Life was good.

Jason was always such a larrikin (Credit: Supplied)

Then in his late 30s, Jason was sent to East Timor – his first overseas posting. He was gone for seven months and we all missed him badly.

But when he returned, he was a changed man.

He didn’t want to do anything with me and the kids. In fact, he didn’t seem to care about anything.

‘What’s wrong with Dad?’ the girls kept asking me.

‘I don’t know,’ I said, but later, I asked him that very same question.

‘Nothing’s wrong,’ he insisted.

‘But you’re so different,’ I said.

‘I’m just a bit depressed,’ he replied.

Jason returned to work but his heart was no longer in it.

He did strange things too. He’d lose his car in a car park, forget to pick up the girls from school and give strangers money.

Worried sick, I persuaded him to see the doctor. He was given counselling for post-traumatic stress disorder and medication for depression, but it didn’t help.

‘You’d be better off without me,’ he’d say. ‘I wouldn’t!’ I’d cry.

The kids didn’t understand what was happening. Once such a calm dad, now he’d often lose his temper and shout at them.

Eventually, Jason was admitted to a mental health facility.

Rosalie, Emma, Madeleine, Susan and Jason (Credit: Supplied)

But it wasn’t until March 2017, when he was 45 and had been there for a year, that we got a diagnosis.

‘Jason has frontotemporal dementia (FTD),’ a psychiatrist told me. A rare type of early dementia, it was thought he’d had it for five to seven years, since he was about 38.

‘How is this possible?’ I  cried.

The cause wasn’t known but it meant his brain was shrinking, damaging his frontal lobe, which in turn made him moody, irritable and lacking in empathy.

‘I’m sorry to tell you it’s a terminal condition,’ the doctor said.

Not only did my once vibrant husband have dementia – he didn’t have long to live.

Susan and her girls were devastated when they learned of Jason’s diagnosis (Credit: Supplied)

Jason didn’t really understand. And as he needed so much care, he was put in a nursing home.

The girls were devastated too.

Sadly the youngest, Madeleine, then 12, didn’t remember Jason as the fun and quirky father he’d been.

‘What’s wrong with your dad?’ her friends would ask. ‘He’s in a nursing home with dementia,’ she’d reply.

‘That’s an old person’s disease – how can he have that?’ they’d ask.

Jason declined quickly.

Within months, he was in a wheelchair, incontinent, could barely talk and was unable to feed himself. He couldn’t show facial expressions either, so I never knew how he was feeling.

When I told him his beloved father had died, he said ‘Okay’ and put on the TV.

Every Tuesday, his carer would bring him home for dinner. I’d play his cherished Phil Collins’ songs and cook his favourite spaghetti bolognaise, which I’d puree when he could no longer chew.

Susan and Jason were soulmates (Credit: Supplied)

Eighteen months after his diagnosis, I was holding Jason’s hand when he looked into my eyes and passed away. A part of me died with him.

‘No, Daddy, please don’t go,’ Emma sobbed.

It was heartbreaking. He was just 47.

We buried Jason in his military uniform.

Four months on, I miss Jason every day. In the nursing home, at least I could hold his hand, smell his hair, tell him I loved him. 

I’m telling our story to raise awareness of FTD and  early onset dementia so that others can look out for the symptoms.

If we’d had an earlier diagnosis, we could have done more as a family to create memories for the girls before it was too late. I also want people to know that the moody man he became at the end of his life wasn’t him. The real Jason was kind and fun-loving.

The Jason I married is the one that I’ll always remember. He was my incredible soulmate for 23 years.

Dementia may have stolen his life, but it will never steal my memories.

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