Jacquie was diagnosed with Pick’s disease in 2007 – at the age of 50.
Pick’s disease is a rare type of early-onset dementia. The disease, most commonly diagnosed in people between the ages of 45-60, rapidly shrinks part of your brain, affecting your speech, sight, behaviour and mental capacity. Its sufferers rarely live for more than 10 years after diagnosis.
Now, eight years since her diagnosis, Jacquie can’t move, open her eyes or talk.
In a desperate attempt to raise awareness, Jacquie’s son Jake posted photos of his mother online.
In a Reddit post, Jake, 31, explains his mum was originally misdiagnosed as having menopause at the age of 48.
In the years since she was diagnosed, Jake has watched his mum’s life deteriorate.
He posted images of Jacquie at the beach in 2010, a few years after he diagnosis — she is smiling and laughing, but Jake notes she can’t remember much.
He continues to track her journey and her seeming loss of joy in everything.
“Music doesn’t matter much to her anymore, but in the earlier stages we would play music she liked. We’d also dance with her to keep her smiling and happy. Dad usually keep the music channel on all day for her to listen to, but there’s no reaction anymore,” Jake wrote on Reddit.
He describes his mother as “a loving, generous woman”. She was very religious, which Jake believes made her very loving.
“In my early 20s, my friends would sometimes come over to hang out with her more than me,” he writes.
“In the early ’90s, she arranged for two homeless alcoholics to live with us while she and my dad helped them get back on their feet. She had a unique skill to love the unlovable.”
While, despite the doctors’ predictions, Jacquie is still alive Jake wonders if his mother’s life is still worth living.
“It’s a weird situation, because while she is alive, everything that made her her is gone,” Jake said.
“However, I think she wants to live. There’s a professor that has watched the case since 2008 or so, and they said that she should’ve died years ago. I think that’s probably due to my dad’s amazing caretaker skills.
“In terms of pain, she doesn’t feel any physical pain. Last year she fell down the stairs and broke her hip. The creepiest thing about it was that she didn’t make any noise at all from the pain.”
Jake told News Corp how difficult it had been watching his mother forgetting how to read and write, eat or go to the bathroom by herself.
“Most recently, she’s stopped walking and unable to eat solid food. Before that it was a few years of paranoia, where she would change from happy to angry in a moment,” he told news.com.au.
“I think one of the lowest points was when she forgot my name, which was around 2012. Then for a while in her paranoid stage, she thought I was an evil devil sort of thing, which was pretty shocking to deal with. At one point after an outburst, she went for a knife to try and kill me so I left home for a few days.”
In a recent interview with Lisa Genova, neuroscientist and best-selling author of the novel Still Alice, which has recently been adapted into major feature film starring Julianne Moore and Alec Baldwin, Debrief Daily writer discussed the prevalence of early onset Alzheimer’s. In writing Still Alice, Genova came to know 27 people with young onset (younger than 65) and/or early stage Alzheimer’s.
Genova charted her chapters in months due to the rapid and ever-changing nature of this insidious and grossly unfair disease.
“I asked Dr. Ali Atri, the neurologist at Massachusetts General Hospital I shadowed, ‘What’s the progression of this disease? Does it move day by day, week by week, month by month, year by year?’ He said that there are good days and bad days, but if you plotted the symptoms on a graph, overall they would be worse every month. So I structured the chapters of the book by month.
“The perception has generally been that Alzheimer’s is an elderly disease of the dying. Unfortunately, that’s a population that’s pretty easy to ignore,” she said. “It’s hard to get funding for resources and research for a population that doesn’t exist.”
In her writing, Genova ultimately tried to answer the question: What does living with Alzheimer’s look like? It would seem Jake has very much (and very sadly) answered this for us with his photo journal.
Jake is calling for Australia to re-examine its stance on euthanasia.
“I certainly hope it’s legal in the next 15 years or so,” he wrote.
“Pick’s disease is very rare, with not much known about it, but they suspect it’s genetic. If I ever find out I have it, I’d grab all my closest friends and family, have a great big ‘going away’ party, and then take my life with my dignity intact.”
He argues the burden of caring for someone who is “basically a vegetable” is emotionally and financially draining.
“We’re happy this is being shared to raise awareness about dementia, and to start the conversations around euthanasia because it just doesn’t happen enough, but it still takes an emotional toll,” Jake told News Corp.
“You never want your mum to die, but it would be better than this.”
Here is Jake’s beautiful visual diary dedicated to his mother:
DEBRIEF DAILY