‘We will never be the same’: Tully Smyth tells of the ‘dementia hell’ of her mother’s battle

Former Big Brother star Tully Smyth has opened up about the scars her mother’s early onset Alzheimers left on her family.

A year after the death of her mother Kay from early onset dementia, former Big Brother star Tully Smyth has revealed the disease left scars on her family that will never heal.

Kay Smyth was diagnosed with Alzheimer’s when she was 51 – and Tully was just 15.

Over the next 16 years, Tully helped her father care for the once career-driven woman as she slowly deteriorated.

Now, she is fighting to drive awareness to the disease, pointing out the damage is done to more than just the patient – and the disease can affect people as young as 30.

“Mum was kind of always in charge – she did the school run, made our lunches and was in charge of all the bills … but slowly, she was unable to do all those tasks, so we had to pick up the slack – dad especially,” she told NCA NewsWire.

Initially, Mr Smyth was able to hold it together – he pretended things were fine, and his then-teenage daughter said she was all too happy to go along with the act, desperate to hold on to her childhood. But as things began to fall apart, Ms Smyth said she had to step up.

Former Big Brother star Tully Smyth has revealed the toll her mother Kay's early onset Alzheimer's took on her family. Picture: Instagram

Kay Smyth was diagnosed with early onset Alzheimer’s at just 51, and within a few years required full time care. Picture: Instagram

“As (mum’s) condition deteriorated, so did dad,” she said.

“He had to quit his job to become a full time carer, so he was at home a lot, withdrawn from his friends. His family were amazing.

“I became his only adult confidant, which I didn’t want. I didn’t want to hear about what was going on, to face up to the reality, but I had to grow up really quickly and step up to the plate because he didn’t have anyone else.”

One of the biggest issues for the family was Kay’s age. Because she was still young, she was able to move around freely, increasing the chances she could run off or hurt herself by accident.

“It was a nightmare, because she was able to walk around, she could open doors … I once came into the kitchen and found her with a bottle of Draino in her hand … the kind of stuff you don’t have to worry about as much when they’re older,” Ms Smyth said.

When they finally found a home that would take someone as active as Kay, Ms Smyth said her grief was compounded by the fact her mother was 20 to 30 years younger than all the other patients.

“When we went to visit her and they'd be, you know, people in their very late stages of life, who looked so much older than my mum, and even just being that in that room with everyone else, it was taxing, emotionally, psychologically,” she said.

The 32-year-old said she was forced to grow up quickly in order to help her father, who was running the household and caring for Kay. Picture: Instagram

The former reality star said she would spend the long drive to the home “amping herself up” to have the courage to go inside, only to have her heart break the moment she walked inside.

“That was heartbreaking enough, to have to go there, but then to have her not recognise you – to look straight through you or you’d reach out to grab her hand and she’d yank it away or look terrified,” she said.

“It wasn’t a life (for her) – it wasn’t a way to live, and that’s something I struggled with. Every time I went to visit her, I just looked at her and I’d just feel so bad.

“I just couldn’t believe the state she was in. I knew she’d be so angry if she could see herself, but I couldn’t do anything about it.”

Kay died last year, and Ms Smyth said the long end to her life would have a lasting impact on her siblings and her father.

“Me and my two brothers will never be the same,” she said. We're going to need years of therapy – my poor dad is just a shell of a human being.

“It's not just the person with dementia that suffers, it's the families too.”

Since her mother’s death, Ms Smyth has ramped up her advocacy for Dementia Australia, speaking widely about her experiences and fundraising for the charity. She will share her experience at the International Dementia Conference, run by HammondCare, next week.

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The Instagram influencer said she wanted more people to talk about the disease, and to realise it can affect people as young as 30. Picture: Instagram