"My heart is f**king broken." Tully Smyth on losing her mother to early onset dementia.

Former Big Brother star Tully Smyth has lost her mother to dementia.

“At 4pm Monday the 1st of July our beloved mum… Dad’s beautiful girl, Kay, finally lost her 23 year long battle with early onset Alzheimer’s,” the 31-year-old wrote on social media.

“After spending the day lying side by side in the warmth of the sun, I told my mum how proud she would be.

What is dementia? Post continues after video.

“How proud she would be of Dad, stepping up to the plate and raising three teenagers into intelligent, funny, thoughtful humans. How his loyalty and love had been unwavering,” she wrote.

“Then I finally let go of her hand, kissed her and whispered that she could let go if she wanted to. That it was okay. We’d be okay.”

On Tuesday night, the reality TV star posted a photo of herself holding her mum’s hand on Instagram.

“There is nothing worse than watching someone you love slowly disintegrate, feeling totally and utterly helpless,” she wrote under the picture.

 

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There is nothing worst than watching someone you love slowly disintegrate, feeling totally and utterly helpless. However whilst there was nothing we could have done for mum… there is something we can ALL do to help find a cure for this insidious disease. Dementia is currently the second leading cause of death in Australia. In fact it’s the number 1 cause of death for females in Australia. These stats are terrifying and there isn’t nearly enough being done in terms of researching the disease, finding a cause or cure and raising awareness. My brother @scottsmythau and 5 of his lovely (albeit hairy) friends are shaving their carefully curated beards off in an effort to raise money for @dementia_australia, in honour of our beautiful mum, Kay. It would mean the world… to myself, my family and all the other families dealing with dementia if you could donate using the link in my bio. I’ve felt so loved, received so many beautiful, supportive comments and if each of you donated JUST $1… we’d really be able to make a difference. ???? #YoungBloodSocialForGood #DementiaAustralia #Dementia

A post shared by Tully Smyth (@tee_smyth) on Jul 15, 2019 at 10:04pm PDT

Tully’s mum is not alone, in fact dementia is currently the second leading cause of death in Australia – and raising awareness and money for the disease has become Tully’s focus as her family grieves.

Tully rose to notoriety on the 2013 season of Big Brother and in 2017 she started to open up about her family’s private heartbreak.

“I would normally never share something so private, so personal. In fact I’ve sat here and changed my mind about posting it at least a hundred times,” she wrote.

Tully’s mother started to show signs of early onset when she was just 14. Her brothers were only 13 and nine.

Kay was 51 at the time, and had become increasingly forgetful and stressed. Eventually she was diagnosed and Tully’s father quit his job to become her full time carer.

 

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Christmas with my boys, missing our mama but so appreciative to have each other. ❤️????

A post shared by Tully Smyth (@tee_smyth) on Dec 24, 2017 at 9:43pm PST

She hasn’t recognised Tully since she was 19, which is something Tully says has made her feel incredibly alone.

“I don’t know if she’s proud of me, I can’t ask her stories about her life, or for advice on mine,” she said.

There is no cure for the insidious disease, with the latest figures from Dementia Australia showing young onset dementia affects approximately 26,000 people in their 30s, 40s and 50s.

Because Tully was so young when her mum fell ill, she admits a lot of her memories are of her with the disease.

“I share photos of my mum from before she was sick, trying to protect her. Trying to ensure that the world remembers her as she was: beautiful and bright and bold. And not as she is today: frail and ravaged by the disease. Unable to talk. Unable to recognise us. Barely alive. Stuck in some cruel purgatory,” she wrote on Instagram.

Tully’s been open about the cruel reality of living with a loved one suffering early onset dementia – it’s the fact that she’s still alive, but not present.

“Perhaps the cruelest aspect is that it doesn’t give you the chance to mourn properly,” she said.

“The only thing familiar to me now is her eyes, because I have the same ones,” she added.

But even though Tully has been grieving the loss of her mother for more than a decade, it doesn’t make the finality of death any easier.

“My heart is f**king broken. This has been the hardest week of my life – I am shattered,” she wrote in a throwback photo of her mum in her youth hopping into a car.

 

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I don’t know why I love this photo so much… Where were you off to mum? A road trip? Who was in the driver’s seat? What music were you blasting? I have so many questions and so many stories I’m never going to get to hear. My heart is fucking broken. This has been the hardest week of my life… I am shattered. Whilst the DM’s + comments are lovely and I am SO grateful…what I really want is a cure for dementia. Please help us find one by donating to @dementia_australia. Link in my bio. ????

A post shared by Tully Smyth (@tee_smyth) on Jul 10, 2019 at 5:19am PDT

In a blog on her website Young Blood Runs Free, Tully gives an insight into what caring for her mum in her final days has been like.

An email from her dad in April read, “I had trouble giving her a third of her meal. A nursing manager confirmed her lack of appetite. After 16 years her body has had enough and is shutting down. A palliative team is being formed”.

“I feel a sudden surge of vomit race up my throat and I stumble towards my balcony. The world is spinning and I can’t breathe. this can’t be happening,” she wrote.

“I let out a primal scream and slide down the side of the oven. I’m now in a heap on the floor of my kitchen. I’m not ready. I’m not ready. I’m not ready.”

As Tully and her family come to terms with losing their Kay, they only want one thing.

“Please help us find a cure,” Tully begs.

You can donate to Dementia Australia here.