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.
Before Jacquie was diagnosed. Aged 48. Image: Supplied.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 the 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 kept 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 twenties, 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 commented.
“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 has 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.”
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 writes.
“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.”
"This was taken in 2005 or so. At this point, Jacquie had Pick's Disease, but it had been misdiagnosed as menopause. She would be about 48 here." "On the beach, around 2010. Lots of Jacquie around. She can't remember too much though." "2010 again. Riding on the back of dad's motorbike was one of her favourite things to do. She got quite terrified when the helmets were on, but once moving had a blast. This had to stop in 2011, when an on-bike paranoia attack nearly caused an accident." "Beach-time walks. Weight is falling off. Conversation is non-existent." "The birth of her first grandchild. She had been looking forward to being a grandmother for years." "Still knows how to party. #yolo." "Cuddles with her 14 month old grandson. He's very careful with her, knows she's special." "She doesn't walk very much anymore. And she has lost a large amount of weight. " "Fun times at the beach. She's 58 here. Her eyes aren't always open, and if they are, she's staring into the void. " "Sometime's we'll move to her to beanbags on the floor." "She still smiles and laughs sometimes. I have no idea why. I really hope she dies soon. "
What do you think about euthenasia? Do you think it should be legalised in Australia?
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Top Comments
I don't think he's talking about euthanasing his mum, as obviously it is too late and she can't consent, but for himself if he discovered he was suffering from the same or similar disease. I think for myself, if I found out I had dementia or Alzheimers, I would rather pass away with my family around me, knowing who they are, than forgetting those who mean most to me and dying in a room full of people, who, to me, are essentially strangers.
My Mum is in a similar situation - in full-time nursing care. She doesn't talk, can't walk and can't feed herself. We 'think' she may know who we are. She is very well cared for and looks happy though. We visit her and it is clear that Mum is no longer there, but she is healthy still. We spend lovely time with her, stroking her and talking to her. I believe in euthanasia, but it would be a difficult decision with Mum. I know she would hate to be living like this - yet she is happy and cared for. All I think when I leave is how cruel Alzheimers is on the family and on her. Good luck Jake.