A woman in her 30s who left university to care for her doctor dad when he developed a genetic form of Alzheimer’s has spoken candidly of the life-changing moment when medics told her she, too, will develop dementia within the next 10 years.
Laura Sides, 36, whose parents had split up, left her psychology degree course at Nottingham University in 2004 to care for her dad Dr. Jeremy Sides, who died, aged 60 in 2009 – the year after she lost her mum Sue suddenly to a ruptured stomach ulcer.
Discovering her father’s dementia was genetic, for several years Laura agonized over whether to be tested, finally finding out in August 2017 that she has the APP gene, meaning that, like him, she will develop the condition within a decade.
Despite the devastating diagnosis, Laura, of Norwich, Norfolk, is determined to stay positive and make the most of every day she has left, saying: “There are not many times in life when you will find out your fate, so taking the test was a very big decision.
“In the 10 minutes it took for doctors to sit me down and tell me I had the gene, I hadn’t changed as a person – but every single part of my life was different.
“Still, I want people to be comfortable around me and to realize that, although the situation is tragic, we can still be positive.”
Laura, who is not currently working, first noticed signs of her dad’s developing dementia when she moved to Nottingham, and he would sometimes sound disorientated on the phone.
She continued: “Dad was a doctor, so he knew exactly what was happening to him, but people try to hide it when they are ill. He would call and not sound quite right, so I started to wonder what was going on.
“Then, I came home for my 21st birthday and arranged to meet him, but he never showed up as he’d forgotten. That’s when I knew something serious was happening.”
From there, Laura’s dad, who had parted from her mom years previously, began having carers, but he would become distressed at the thought of strangers being in his house.
So, aged 21, she made the selfless decision to leave university and look after him herself, as he was much calmer around her.
At first, she lived close by, popping in every day to make sure he was eating, and that the house was tidy, before heading off to her then-job as a waitress.
But, as he deteriorated, it became clear he needed round-the-clock care, so in 2004, she moved in with him.
“It got to the point where if he was left alone, he’d walk off and get lost. I’d write my number on his hand, and on pieces of paper, which I put in all his pockets, but there were still a lot of times when I’d have to go and get him from the police station,” she said.
As well as challenging moments, there were times when looking after her dad was a pure joy, according to Laura.
“It’s a disease, and if we can find out more about what happens. We can target that and we can treat it.”
It's time to bust some myths and spread the word. pic.twitter.com/pAEruxHxS2
— Dementia Revolution (@DementiaRev) March 5, 2019
She continued: “He was the most wonderful, doting father, so it wasn’t a chore to look after him. I wanted to do it, and it’s still one of the best decisions I ever made.
“I know it sounds very sad, but there were really beautiful moments. We’d wake up, I’d ask what he wanted to do that day, and however ridiculous the adventure, off we’d go.”
Laura tried for as long as she could to keep her dad out of a care home, but later in 2004, aged 55, he became too unwell to stay at home.
For the next five years, he was moved around various care facilities – during which time Laura’s mum sadly died in April 2008, aged 59, after a stomach ulcer ruptured – only for her to lose her father shortly after, in June 2009, aged 60.
Before he died, Laura went to a hospital appointment with him, where doctors mentioned that his form of Alzheimer’s was genetic, meaning there was a 50/50 chance she had inherited it.
Overcome by a haze of grief after his death, she put their chilling warning to the back of her mind.
“After Dad died, I just wanted to get away, so I went on a round the world trip before deciding on a whim to move to Melbourne in Australia,” she said.
“After a couple of years, the doctors’ warning crept up on me that this form of Alzheimer’s was genetic, so I could get it too. I wanted more information, so I saw some doctors out in Australia who confirmed that I had a 50/50 chance of having it.
“I wasn’t quite ready to know then. It’s information you can never ‘unknow.’ But I realized I may be useful to researchers and I asked if I was able to help in that way.”
So, in 2015, Laura began to participate in a drugs trial, which saw her visit hospital every three-and-a-half weeks to receive medicine intravenously.
Her progress was monitored through monthly MRI and CT scans, as well as lumbar punctures, and while the researchers knew whether or not she carried the gene, she still had no idea until 2017.
She explained: “The not knowing started to really impact on me. I thought about it every day. It was no way to live.”
Following six months of counseling, which assessed her mental health and ensured she was ready to find out such life-changing news, in August 2017 Laura was given her results, while she was still living in Melbourne.
Speaking of the day that will be etched into her mind forever, she said: “After taking the test, it had been a six week wait, which felt like a lifetime. I was living in limbo, flitting between feeling as if I was facing impending doom, to being serenely calm because I had no control over the results.
“On the day itself, I went to a weightlifting class at 6am to try and calm my nerves. Then, as I was in the car on the way to hospital, I began feeling incredibly anxious, like everything around me was white noise.”
She continued: “When doctors broke the news, I didn’t cry. I didn’t feel fear over the fact I won’t have a long life, it was more sadness for all the things I wouldn’t do.
“I was pretty numb until I started to think about how I’d tell my loved ones – and that’s when my heart broke.”
Still processing the news, Laura decided to move back to the UK – returning home in December 2017.
At first, she struggled, feeling as if she lacked purpose, admitting: “I felt awful. I knew I wouldn’t have a family or a retirement to work towards. I didn’t have anything to focus on.”
Then, during a sleepless night in summer 2018, she decided at around 2am to enter the ballot for the 2019 London Marathon.
Casually mentioning it in hospital a couple of weeks later, during one of the routine drug trial appointments that she still attends, now at London’s University College Hospital, she was told she should apply for a charity place instead, to guarantee her a spot.
In a poignant twist of fate, charities Alzheimer’s Society and Alzheimer’s Research UK have been named Charity of the Year for the 2019 race, after joining forces to create Dementia Revolution, which aims to power groundbreaking research at the UK Dementia Research Institute.
After securing a place, Laura has been diligently training, which she said has given her a focus once again.
By speaking out, she hopes to raise awareness of Dementia Revolution, and also to start the conversation around early-onset Alzheimer’s, to encourage people to talk about it more openly.
She said: “I have decided to use my marathon run for Dementia Revolution as a platform.
“I refuse to live in shame. I remember when Dad was ill, people wouldn’t know how to react and it all felt very hidden away, but I want to be honest and open.
“It is difficult to know what to say to somebody like me, who has been diagnosed with something that hasn’t happened yet, but will. Still, the last thing I want is for people to feel uncomfortable around me.”
She added: “The more information we can get out there, the less of a taboo this will feel. That said, the support I’ve received so far after going public has been amazing – that’s what is carrying me.”