The agony of a son waiting for his mother to die, while sitting at her bedside

Seven months ago, a young man found his words about his mother's battle with early onset dementia going viral.

Jake Heath had shared 11 photographs of mum Jacquie over the course of 10 years, which highlighted the shocking extent of her deterioration from Pick's disease.

What had been a way for Jake to vent some of his feelings online turned into a beautiful photo essay viewed by millions.

The 32-year-old, from Sydney, says that of all the words he wrote to accompany the photographs, readers clung to six in particular: "I really hope she dies soon."

Seven months on, he tells us: "I'm continually surprised and saddened that she's still alive. The fact is, I'm still waiting for her to die."

In a personal Facebook post written before Christmas and shared with Mirror Online, Jake gives an updated account of how it feels to lose a parent to early onset dementia.

"It’s 11 days until Christmas and mum is still alive."

"She celebrated her 35th wedding anniversary with my dad last week, but she has no idea about that. Her current state is slightly better than vegetative, but not by much.

"She can't talk, can't feed herself, doesn't walk anymore.

"When I visit, I help dad half-carry, half-guide her down the stairs to her bedroom. She's wasted away almost completely, despite eating like a horse.

"Every single day I expect a phone call saying that she's passed away. Whenever I see that it's my dad calling, my heart skips a beat, wondering if this will finally be it.

"When that call finally comes through, I don’t know how I’ll react. I’m not sure if I’ll be happy or sad. Probably a very confusing mix of both.

"Life has been a very confusing mix of both.

"I was only 22 when she started getting sick.

"You know what has hurt the most over the last decade? I can’t tell her anything I’m proud of.

"She’ll never meet my kids if I have any. They’ll never meet her.

"She’s not there to guide me through the hard times (which, coincidentally, she helped cause).

"Christmas and birthdays are a painful reminder that she's not ‘here’ to celebrate with me.

"Over a period of a few months she forgot my name, then the fact I'm her son, to not knowing me at all.

"At one point she thought I was the devil and pulled a knife on me. Yay the paranoia stage!

"For a while she kept trying to escape home, and succeeded a few times. The time she fell down the stairs and broke her hip - I wasn't even there, and it was terrifying.

"She doesn't know who her best friends are, not just old but new. That’s just a handful of the sort of s**t this disease has put me through.

"That’s not even taking into consideration my dad - her husband through sickness and in health. That's not thinking about my sister, and how she's raising her children without her mum to help and provide motherly advice and care.

"I don’t know how they do it, if they’re faking it as much as I am.

"The entire thing tears me apart on a daily basis.

"I've not let my mind have time to rest. Letting my mind rest is dangerous.

"When it’s resting it’ll go from motorbikes to old friends to that silly cat I saw on the internet to ‘oh my god she’s going to die and I don’t know when and I feel so f***ing helpless.

"It’s been years of this, and it’s exhausting. I’m stuck between wanting to hide and wanting to be surrounded by people and distracted from it all.

"I find love and support in my family and friendships, and that certainly helps get me through. And yet, I find myself desperate to be alone, not because I want to be, but simply to escape from this whole situation life threw at me.

"About once a week I find myself listening to some moody music and going over the comments on all the articles. I know men aren't supposed to admit to it, but I've cried more in the last year than I had in the previous five.

"As her death draws nearer, it seems to get worse. I know it’ll be over soon - I've known that for years now.

"On one final note, let me share my most valuable possession. It is a book mum gave to me when I was 13 when we went out on a ‘welcome to being a teenager’ dinner date.

"At the time, I thought it was mushy and stupid and totally not a sweet pair of Nikes that I wanted.

"On the inside cover she wrote “To my darling Jake, love Mum. Always remember this.” It sits on my desk as a constant reminder of the bittersweetness of life."

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