It’s the most wonderful time of the year – Dementia Awareness Week. A week where millions of people like me will be reminded of just how much has been taken from them, and how little they can do about it.
I raised awareness once. It was thrilling.
Almost two years ago to the day I woke up on a Tuesday morning, feeling distressed after a nightmare I had had where mum had passed away. In the desire to seek solace with a handful of internet strangers, I neglected work for about half an hour and composed an image post online.
Despite the fact that the post was so personal, I wanted to share it with a small and anonymous crowd rather than my friends and family. As odd as it sounds, I did not want to be comforted by those closest to me. While quite a few were aware of the situation, the last thing I wanted was to come across as seeking pity. Nor did I wish to be a burden on anyone by starting their day out with a bunch of sadness.
And so I put together just 11 images with a brief description attached trying to aim for one that showed each stage of the illness.
On the final photo I put the caption ‘I really hope she dies soon’.
It was those six words that the small and anonymous crowd grabbed onto. The post went viral, and in the midst of the thousands of comments, I started receiving messages from major media sites asking me if they could share it, and if so could I go into a little more detail with them.
Then a bunch of other large sites shared it without asking for an interview or permission. Doesn’t bother me though, as I had put it out there for people to see, right?
…Except I hadn’t.
I uploaded it with the full intention of releasing some steam and pent-up negative emotions. While it was open for anyone to see, I never expected it to take off. Regardless, I agreed to the interviews. If you missed it, google ‘Jake Heath dementia’.
The next 24 hours are a blur. I couldn’t sleep, couldn’t eat. My LinkedIn was showing video journalists looking at my rather empty profile, attempting to find contact details, while photos of my family were displayed on the front page of many large websites. This is it, I told myself, quite happy that maybe something I had done was going to matter. Maybe this was my time to start bringing awareness to early onset dementia and the hell it puts people through.
Over the course of the next few days, I wondered to myself how I could keep this from being just a flash in the pan. I thought of many ideas to make this sudden exposure last, things that could live on, that could get other people involved. There had been thousands of comments across the original post and all the articles, with many people expressing that they had been on a similar journey. Comments that rightly said that unless you’ve been on the journey, you wouldn’t understand why I would rather bury my mother than watch her, and us, suffer any longer.
The entire whirlwind ended with our segment a week later on a morning chat show. The producers had designated eight minutes to our story, including a large part of the mini-documentary I made. I’m told that was a rather big deal, as most segments were usually three minutes.
And then it was over.
Like, completely over.
No more calls, no more interviews, no more random people trying to add me as a friend on Facebook. Things were almost back to normal. I even had to work again.
A few days after the whole ordeal was over, I was in Batemans Bay at the pub with my dad and his best mate Sam having a beer. Sam said to me “Mate, I reckon you did more for awareness with that one thing than anything else that’s been done in the last few years.”
It was touching, and maybe he was right, despite the many great organisations and charities working to raise awareness and find a cure. And yet, as I sipped down that cold, delicious beer, I felt completely empty.
I felt completely empty because despite all the love and support at home and supportive comments online, all the awareness in the world isn’t going to bring her back. Nor will it bring back the millions of people around the world who are suffering from some form of dementia. Perhaps even worse, it won’t do anything to help their families and friends who also suffer — some might say even harder than the victim.
I’ve never been one to wear my heart on my sleeve – it rarely matches my outfit. I’ve never wanted people to see the real me. The real me is an emotional disaster. I have been for over a decade. I’ve spent so much time and energy doing anything and everything I could to hide from my emotions.
Two years later and mum is still alive. She’ll turn 60 in a month, 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. She’s wasted away almost completely, despite eating like a horse.
How can you grieve somebody who is still with you?
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. In that time I’ve enjoyed a wonderful career, been on some great holidays, got my motorcycle licence, made a new brother-in-law, and been blessed with a niece and nephew.
I do my best to escape, as it’s the only method of emotional survival I’ve had. Ranging from being a borderline alcoholic to bingeing on Star Trek episodes well into the early hours of the morning, to spending hours every night, and sometimes entire weekends, playing computer games – 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 fucking helpless god dammit.’
It’s been years of this, and it’s exhausting.
But, my god, if you ever want to feel worthless, see something you did go viral and know that there’s literally nothing you can fucking do about it.
I truly hope she dies soon. I miss her and I want to say goodbye.
Much like dementia, there’s no real end to this piece. There’s no final solution or happy ending. It just is what it is.
We’ve spent so long waiting for mum to die that 90% of this article was lifted from something I wrote on my Facebook page a year and a half ago.
It’s the waiting game from hell, and I don’t see how awareness will do anything.
Before I sign off, I want to share something I filmed a few weeks ago. It’s a few minutes out of half an hour that I spent with mum.
I spoke to her, held her hand, and bawled my eyes out. I have heard that some people with extreme dementia will gain a moment of lucidity. I wanted to film it just in case that happened.
Spoiler: it didn’t.
I truly don’t believe awareness is going to do anything. It shouldn’t be the end-game. Despite that, I have written a book, in the hopes that the hell mum has gone through will not be in vain. It’s free to read here.
Originally published at medium.com