Monday, September 5, 2022

The Truth about my dementia

 The Grim Bit

What to write anymore?

I could go on about the minutiae of my life in that droll way I do which everyone is very complimentary about. But I think it's getting boring. 

I suspect it's lost its way a bit.

So what can I tell you? I don't want to sound self-pitying. It's a danger area I try to steer clear of. It never helps anyone.

I'm going to try to cut through the chummy guff and tell you what I can. 

There are 2 people immediately involved with this dementia issue: J and me.

Our relationship has been more companionship than anything for the majority of our marriage. There was a period I wasn't aware of when J couldn't bear to be with me due to how I'd changed.

We had relationship counselling 2 years ago. It was always going to be the sticking plaster over the rift.

It was horribly upsetting. For me, I felt such a failure. I still couldn't understand why things had just gone; just petered out.

We then got my FTD diagnosis.

The more we learned about the condition, the more it explained why I didn't get where J was coming from most of the time, my lack of empathy, why I was behaving like I do, and the symptoms I was directly conscious of, like tiredness, irritability, oversensitivity to light and noise, my unwillingness to do shared activities or go anywhere, losing words, substituting words, the ever increasing brain fog, my temper and even more faux pas than ever before.

We probably use FTD as the whipping post more than it deserves, nevertheless... we are J and I, in the present. Her working upstairs and me downstairs typing this. 

I try not to think of the future as it means further degradation of my brain and behaviour. Nothing I nor anyone else can do about it.

I've always been nostalgic for romanticised visions of my past and at the same time haunted by those myriad times where I let myself down, which I'm reminded of every morning as I wake up.

J is very future-focused (management -speak) and we are finding it very difficult.

What is our relationship, what will future relationships look like, how rapid will my deterioration be?

It's very difficult planning if you don't have even a rough idea of timings; key-moments.

I don't know where any of 'this' is heading. 

But this is where we're at.

Mitigating the Inevitable

Okay, let's try and be positive here. I am trying to keep my brain fit and functioning. This is how.

I'm playing with the dogs every day - Stanley and I play a game with these balls which bounce irregularly. I throw them off the wall and he goes crazy trying to catch them. I think it's his new favourite game. He's not interested in the other balls that have a regular surface and bounce predictably. We do this for half an hour at a time. 

Aren't dogs brilliant?

I love the dogs. Chippy is a bossy dachshund who is deeply suspicious of strangers, and Wilbur is a dopey Spaniel who is the greediest dog in the world, but he's lovely.

I've also started juggling again, to try and keep my coordination from going. Years ago in the 90s there was a juggling craze. While juggling 3 balls is muscle memory you do get out of practice and I used to be able to do tricks. I'm trying to do 4 ball juggling again as I used to really like that. I'm getting there...

I read lots of news  - The Times everyday, parts of The Guardian, BBC website for news as it happens, and also other magazines and feeds. Looking forward to today's news to see who our latest totes-inappropes PM will be.

I also run D&D games as no doubt you know. This involves assimilating huge amounts of information, storylines, and roll-playing numerous characters while riffing with the players. All the while trying to keep the flow of the story and plot(s). It can be exhausting.

I DM'd a new campaign yesterday - very different in its setting (think Game of Thrones meets John Carpenter's 'The Thing') which I think went pretty well.

I write a journal every night. It's complete salacious garbage but it's my complete salacious garbage.  

It's cathartic, if nothing else.

So I am trying to keep going - keep ticking over - while the temptation is to sit on my backside watching the same old stuff on YouTube!

All things considered I'm doing okay.

I'm okay.


  1. You are more than ok, you are great

  2. Looking forward to seeing you in a few days time

  3. Glad to hear you're doing well! Positivity breeds positivity!

  4. Honesty is the best policy. Thanks for being just that at all times. It allows me to be just me too. xie xie

  5. The honesty comment was by me.

  6. Love reading your posts. Keep writing :) Sarah C

    1. Thank you Sarah C! Tbh I'm waiting for my first troll so while I'm dining out on all these lovely comments for now!