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.
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.
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.
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.
Top Comments
Dementia is a horrendous disease. I would rather die of anything else. I watched my beloved Nana suffer from dementia. I will never forget the first time she said to me, when I went to visit "I don't want to hurt your feelings, and I am having a lovely time, but I don't know who you are". I am crying just typing that, and it happened 9 years ago. Watching someone you love get confused, then not know you, is heartbreaking. Tully and family, I am so sorry for your loss, and thank you for sharing, and raising money to support research into this dreadful disease.
My Mum was 62 when she first began repeating herself and we lost her eleven years later. Her heartbreaking illness, we believe, also cost us our Dad's life as he was so devastated and depressed at watching her slowly disappear that he developed cancer and died too. I have read with eagerness in the years since their deaths all the research I can get my hands on about both dementia, and Dad's illness cancer. There is just so much research supporting a nutritional approach to preventing and treating both. The BBC UK featured a story about a son who reversed his mother's dementia with a nutritional approach. Why is it only pharmaceutical treatments get all the money for research?? We have to redirect our focus on health and spend more money on nutritional and plant-based research and preventive health, rather than pharmaceutical band-aid treatments. We must also demand transparency on the damage pharmaceutical medicines might be causing, particularly in the area of dementia.
The majority of pharmacological research is done by the pharmaceutical industry, they fund their own R&D.... unfortunately governments are not willing to spend the many many millions of dollars required to run clinical trials in any area.