Sleeping so much. Easily for 9-10 hours per night. Tossing and turning for hours. A terrier yaps in the garden below. It must be Stanley, but I then realise I’m in Wells and it’s the neighbour’s dogs.
Every morning I awake not knowing where I am, around about 9.30am.
Wells is lovely and quiet but nothing much happens here, apart from the odd murder. Lots of heroin too if that’s your thing. And arts and culture and god-stuff with that Cathedral and all.
It’s funny when you see a place change over 50-odd years. The awful new houses - little boxes cheek-by-jowl, no new services; schools, doctors’ surgeries and sewage pipes all overflowing
I’ve considered moving back here for the first time in 30 years but I’ve concluded that even as I am it would be a retrograde step for me - just as it was in my 20s.
Failures #23
Whilst I was here at my parents’ (now in its 10th day) I was supposed to read and précis a ton of first edition Dungeons and Dragons adventures, make them meals every day and clean for them.
I read the adventures several times but failed to make much more than introductory notes. I read some of my other books. I read The Times most days but far more selectively these days, rather than just cover-to-cover.
That’s it. I made 3 meals my parents were rather indifferent about, did no cleaning apart from the dishes and my own laundry.
Social life - I go out for lunch every day so I get out of the house. I see my sister, I’ve met up with old friends Tanith, Paula, Clare, Franca, Stuart and Mark. But I had 2 nights of back-to-back heavy drinking and still haven’t recovered 48 hours later! #middleage
More Memories of Martin
My reminiscences of the enigma who was Martin Duncan-Jones went down very well with those who knew him. More anecdotes…
“An architect is an artist whose pallet is your wallet.” This was Martin’s view on the fact that architects get paid a percentage of the cost of a build, so it’s in their interest to not save you money.
He once accused me of being Rupert Murdoch when I was trying to get a website together where we could all publicise our work.
“I’m keeping my head below the parapet.” This was his stock phrase when people were trying to ‘make him do things’ in his words. What that translated as was ignoring phone calls from his one client (The Diocese of Westminster) offering him work.
On rave culture: “If those were factory conditions people would complain.”
“Er, no.” His response to anything I said whenever I was out of favour. Mary Mary…
He had great anecdotes. One of the things he was very proud of was never having bought rubble bags but using the empty sand bags instead and these were to be reused as well. “Ollie once…ripped…a bag. I remember it well…” and on and on about some great transgression when Ollie had cost Martin by ripping a plastic bag.
He also had the worst vans in Britain. He had an old Citroen van for years that bled brake fluid. He had to stop every 40 miles to put break fluid in but he’d worked out it was cheaper than getting it fixed.
One of the last jobs we did I would start at 8 and then go to pick him up at 9.30am from the station (he would be up till the early hours fighting online with people on blogs and comments sections) and he was reading a book in ancient Greek “Dual text dear boy, but it’s all coming back.”
I could go on but will stop there.
The Disney Democratic Republic
The supermarket at the end of the road. It was all in Disney colours. I went in with the intention of buying a special chocolate biscuit. I knew I was being monitored by an unseen entity. The last of these biscuits were on the shelf. They were intended for consumption by infants, but they were so good I just had to have one.
This was strictly forbidden behaviour.
So I took it. I realised then that the die had been cast. I needed to get out of there. The entity was intent on my capture.
I went through colourful yellow and red doors onto a platform where I took a very new yellow and red train which hurtled along and ended up in a huge colourful resort with around 12-15 other people.
Our hair was all silvery grey. We knew the entity or entities were in another metaverse to our own and they were looking at us. Trying to grab at us through the phlogiston. I suggested we all stick together but some people didn’t. One woman went outside and started cleaning - sweeping the floor. But the entity came and touched her. You could see she had been affected as her hair had turned from silvery grey to silvery purple and she could no longer see or hear you.
Others went out to save her but one by one they went to their doom, mindlessly cleaning as automatons, with their newly purple hair. Then it got me.
Just sitting here. Drizzle outside. Dogs don't seem interested in walking, That's a let off.
Nothing springs to mind. No more Youtube clips. Done all of the only podcast I like.
Cars go by. Too fast for this road.
Can't concentrate on reading for long enough. Have to make myself.
Head is numb. A light head cold with no other symptoms confines me here. It's the wafer-thin mint that tips me in to total atrophy.
Apart from this of course.
Sip some expensive herbal tea. Drinking too much caffeine these days.
The others are working upstairs.
At breakfast J talked about when she was married. I don't think she counts this as one. Or certainly not anymore anyway.
I don't have much in the way of empathy but that was pretty telling.
It must feel like that to her though. That's valid.
Nothing like feeling a spare part. Reminds me that it's a recurring theme of my dreams - abandonment, isolation, pointlessness; purposelessness.
Continue waiting.
Driving Fail
I cancelled a hire car this week. A slight cold was enough to dent my confidence in my concentration levels for a 3 hour drive on motorways.
Expensive waste of money.
The others need a break from me. I don't know how they experience me. The shouting is pretty horrible I gather. I'm trying to keep a lid on that.
More difficult than ever to be self-aware - nigh on impossible. Self-analytical is different of course.
Would have been nice to see everyone. I'm only going to take trains from now on, to Castle cary and back again.
It would be good to see other people but they all work hard and need their weekends.
My parents are properly old now. That part of middle-age where your parents' generation topple like dominoes.
I have to get out and go places for everyone's sake. Their mental health as much as my own.
Games
This is what I live for now. Meeting up with people. The joy, the energy of the shared experience.
I even watched some of the rugby. I don't like it so much these days - all that kicking drives me nuts. Finding rugby league more fun. More tries.
When I can't run D&D games anymore it will be something. Maybe not as profound as I expect. A gradual decline to nothing and then total apathy. I think that's how it goes.
Sorry for being depressing. I promise I'll make it up to you.
Stop this self-pitying bollocks!!
Right - Pick myself up out of this fug and get on with it. Get into my walking trousers (for there are such things) and get the dogs walked.
READ READ READ!! Force myself to do so and take notes. Prepare for Sunday and Monday - 2 - possibly 3 sessions of Dungeons and Dragons! Madness I know.
I will be very knackered.
I move back and forward like Arthur Fowler "Shut up, Pauline!" in an effort to galvanise myself out of this seat.
I can only control myself in all this. Get up and do stuff.
I woke up at 9. NINE! That's such a lie-in. J was out last night with a friend. No text as to an eta, but that's normal.
Stanley couldn't or wouldn't grasp that his Mummy was coming home. And the fireworks were not conducive to his relaxation. The slightest noise was setting him off, so I waited up with him, trying to calm him. J got home around 12.15.
I then took a while to get to sleep.
But back to today, I woke up in a really good mood. So what happened then?
I don't know. Something made me really angry: full of inner rage.
I really busied myself - I cleaned the window frames, put the cellophane on the windows for the winter and used the hairdryer to get the creases out which was not wholly successful - even had to take the curtains off too.
I also mowed the grass. I repaired the flex on the hairdryer. Little things.
I thought this would make me feel good; after all I was achieving things and not wasting my day.
I guess J relaxing and not taking in what I was doing was slightly grating - how dare she not appreciate my toiling for the good of the house!
I reminded myself she's worked a 50 hour week. She's allowed to relax.
J was at the hairdressers from 10 till 2. Mmn. I'm really angry.
I'm still at a loss why I'm feeling this way.
The Semantic Variant hasn't really taken hold, but the mood swings are awful. It's Behavioural Variant I'm struggling with. My Frontal Lobe is being eroded - eaten away - and I'm finding it so difficult to join in socially where I used to so
What’s on the TV? Rupaul's Drag Race, Strictly Come Dancing, and variations on those themes. I can’t join in with any of those. Only Murders in the Building is the exception which we all like watching.
I can't do the frenetic, camp, fizz anymore, that's for sure. It means I spend more time on my own in the house than I used to.
I'm not perfect. J does the cooking: I clear up. It always has been and it's getting more challenging. Things are left habitually, without malice I've come to understand, but it's just never-ending.
And of course, they feel they're tiptoeing around me, which of course they are.
Apparently I’m leaving the oven on and the toilet seat up when I’m urinating.
It's good to know this stuff. I can then work on these things.
Life is a balance and it's about choosing your battles.
Anyway, I sometimes feel my points of view are quickly dismissed in this house. Maybe that's the reason I get angry.
It feels like it's me vs the females at times. Or me vs the non-demented at the least.
And there are plenty of people without dementia who can be just plain wrong.
John Taverner, exercise, this video (below)? I'm much calmer on my own watching this CGI interior listening to the auto-Jazz in the background. Maybe Putin goes to bed listening to this. Maybe not.
Aside from walking the dog I need to do some proper exercise. My body's atrophied since giving up work. I haven't lost as much weight either as I thought I would since giving up alcohol, which is disappointing. I guess that's in part my age and a more sedentary life.
I am not going to the gym. I used to be a gym-addict in my 20s. I went again for a few months in my late 40s. I can't stand the places.
Not sure the knees or ankles will stand running again.
Swimming is my favourite exercise - wonderful flow activity with zero impact, but can you find a decent pool in this country?
No, is the answer you were looking for.
Dungeons and Dragons
Yes. You were waiting for that. And one can hardly blame you.
That's you that is.
So, Rick's pub is unavailable until 4pm so I've cleared it with the females and the 5 goblins will come here, to the dining room. I think the girls will make themselves scarce if they can help it.
We can be quite loud and smelly.
More fun in a Lovecraftian-horror, set in an epic-fantasy world akin to our own European Gothic-Rennaissance. How many boxes does that tick?
It really is proving to be one of the best D&D campaigns I've ever run - 'hugely exiting and full of peril'. Sounds like a modern film rating!
So we should have some fun tomorrow.
J and I love fantasy and sci-fi - X profoundly doesn't. J and I devoured House of The Dragon. We also found a really good Cyberpunk thing just started on Prime the other night: The Peripheral. Worth checking out.
Having sold the van I’m now consigned to public transport. I came down on the train for the first time in years. I’d thought Castle Cary was much further away - the same distance Bath is - but it’s only 10 miles. Dad was there to pick me up - just like when I was in my early 20s! It was a really nice journey on a new train. My noise-cancelling headphones and a half-full carriage added to the quality of the journey.
Dad chose a really dumb way to go back. I wanted to go back through the pretty villages of Croscombe and Dulcote for old times’ sake. I used to cycle to see friends who lived there. Bike lights back then had about as much illumination as a cigarette. I never got run over, but I did end up in ditches a couple of times.
Instead we went back through country A-roads with high hedges and littered for miles. With the detritus poured out of vehicles by scum.
Long-haired hippy bastard!!
What can I tell you about this place? Well it’s changed and I’ve changed. We’ve changed. More populous, more affluent and at the same time more down and outs. Visible heroin problem and lots of mental heath issues. The 2 are not necessarily mutually exclusive of course.
I realise this is par for the course for almost every developed country in the Western World, but hey.
I know very few people here now. It always amazed me who came back, not who stayed. When I left and being a creature of habit, I never wanted to leave, yet I ended up in London, dirt-poor, looking for work. But it was so exciting and vibrant. To a young person it was great. No one calling me out for looking different, no one trying to ruin mine and my friends’ evening because it was their way of feeling better about themselves. In fact, lots of people like me, relishing their new found anonymity and that no one else gave much of a fuck either. No one was going to try and ruin your day. There were lots of people much more edgy than me so I really truly was a minnow in an ocean. Bliss.
Freedom in other words; a chance to reinvent oneself. I shone brightly for a few years, thankfully realising there was no place for me in the world of advertising - despite having won an award as a student - and then after an epiphany and retraining to be a stonemason, I found that the umbilical cord I thought had long-gone snapped me back home like a bungee and I got a job in a local stonemasonry banker shop - the only positive reply I received from a dozen letters, and so I returned, churning out stones in factory conditions at £4.15 per hour in 1996. A 39 hour week meant I would have a net pay of £130 if memory serves. And the place was like Lord of the Flies with the chosen alphas at the top who would give beatings out to the apprentices, but had their favourite - a surly little bastard just like them. They’d call it toxically male these days.
I spent a year there an then went to a much nicer place in Shepton Mallet which produced a far better quality of work.
But I digress. It’s strange moving back to a small place when all your peers have left as well. It’s like the heart and soul of Eden has just disapperaed making it feel like a semblance of itself. There are people who never left who can be quite resentful that you were ‘disloyal’ as they see it. I find the patheticness of that really funny.
It’s also funny - to me at least - that the biggest rebel I know returned there. I know she’s told me why but I can’t remember and I think the reason that I can’t is that I could never truly get my head round why.
Brain not compute…brain not compute…
So after 2 1/2 years I packed everything in and moved back to London, but that’s another story.
Modern life IS rubbish (but it has its compensations)
I’m at the cafeteria of The Bishop’s Palace having a vegan sandwich. I’m not a vegan but I’ve developed an intolerance to lactose. It’s an age thing, you see.
Middle-classed hippies with their home-schooled boundary-free kids running and screaming at the other end of the restaurant. I’m here at the furthest end from them, safe with my coffee and cake with my noise-cancelling headphones.
What would I do without you…?
I recommend these to everyone who has dementia or any sensitivity to noise. Other people’s dogs, children, mobile phone conversations, loud revolting students (a tautology, I realise) and just general pub/restaurant/classroom etc noise. Makes life more tolerable. Not a cure, but a treatment.
You probably need a product demonstration. In fact, you definitely do if you haven’t put a pair on. Unless you’re already hard of hearing which I would say is a far better place than being hypersensitive to noise.
I should have been in advertising.
Actually, no.
Even the people I know who went into it regret it.
Stonemasonry was the least worst way of earning a living I ever found. I tried a lot of different things see. I would have much preferred to be a trustafarian just doing course after course. Loved learning new things.
Friday afternoon - I met the goblins at The Antelope (seriously) and there happened to be a beer festival. Amazing beers - New England Pales, IPAs and unfiltered pales. Gorgeous. I didn't realise how drunk I was.
I came back in good spirits and was sat in a room with X. What set me in a rage is immaterial. But rage it was.
Since then I have been very quiet and have made the decision not to drink except with a meal. I have been looking back at this moment in time and since then I have been feeling as though a change has occurred.
A change within me. I could go more easily at any time. This is not a good place to be. It's like I'm shaking inside.
To placate it I listen to calming music and read. I watched The Rings of Power last night. Despite the basement dwellers' condemnation of it, I found it a great tonic.
It would seem the overriding form of dementia I have at present is FTD Behavioural Variant, or Pick's Disease. The Frontal Lobe is degrading, which is a shame in the main as it's responsible for behaviour. So, more irrational shouting out, rudeness and anger.
This is a genuine trough in the overall dementia wavelength. I'm also a little bit more discombobulated when it comes to being put on the spot with conversation, being questioned and so forth.
My conversational topics are becoming very limited as well. This must be very tedious for everyone else!
One of those clients
A man phoned me today as my masonry website is still online. He started almost telling me what I was going to do in the job as I would be working with another bloke I don't know. I took an instant dislike to this guy. You don't phone up a specialist and tell him how to do his job. He was pretty condescending in his manner too.
The conversation was very stilted and the temptation to tell him to fuck off was palpable.
I didn't though.
Don't worry! If he calls again I will.
Bye Bye Van
There are certain things in life - key moments. This was one of them. Over the last couple of weeks 2 friends have come over to buy tools and equipment from me I will never use again. (Saying that, I kept other equipment I will probably never use again, but hey...).
But it was the van being sold and driven out of the driveway that has really resonated. We've been through a lot - we had a symbiotic relationship. I couldn't have done so many things without it. And then with all my decals still on, it goes from my life. And that was the end of that.
That's pretty significant I'd say.
It's funny how we anthropomorphise inanimate objects, machines etc. We love our pets and grieve for them like a family member when they pass.
Although I haven't wept, there's definitely a part that's gone from my life. It wasn't just the van - it's what it signified: my working life; my contribution to the family; my living; the one job I hated less than the others.
It's made me feel confined. I want to go out less and less and only to places I'm familiar with, unless I REALLY want to see someone or something.
That chapter is now well and truly over. Suddenly my arrogant distain for the RDS monthly group has gone - I need it now. I belong there. These are my people. I've seen people degenerate in only the 2 years I've been a member. I thought I was almost immune to it. Like Chris or Alison my dementia would remain constant for 8-10 years.
Nah.
Next Chapter
Well, I'm enjoying cuddling up with the dogs on the sofa and taking them for walks, although Stanley is extremely naughty at the moment. His mother won't hear anything of it though.
Evil Incarnate
I'm enjoying reading and preparing and running Dungeons and Dragons games.
I need something physical to do as well. I'm atrophying quite quickly, plus the exercise is v good for the brain.
I'm going to Barnes Wetland Centre for 6 mornings starting in October in conjunction with RDS (Rare Dementia Support) as I love birds and nature so I am really looking forward to that.
I've got the games holiday in early October for a week.
I'm going to see my family in Somerset late September, and see my friend Mark.
Still got the gaming, Sundays, Mondays and Tuesdays.
That's pretty good. Better than nothing. Helps to write these things down so you can see them.
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...
...here 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!
Exclamation marks are the order of the day. Yes, I'm in one of those moods.
Days have been wasted by yours truly watching YouTube videos on my computer. They are my TikToks. I'm actually rather angry with myself for this as I'm wasting what life I have left.
So I turned the computer off and started reading that D&D adventure, and then I started to précis it, which I've found is the only way I can ever remember what the hell it is and then run it competently.
I am now - for me - really on the ball and full of energy. It's lifted me up from a trough where I was getting pretty depressed, thinking I would not be able to DM anymore.
I'm my own worst enemy - it's easy to fall back into just wasting your days away achieving nothing. I don't want to do that, so I turn my computer off and read and write instead. And it makes me tired, but in a good way.
The Exclamation Mark in Art.
(Dear reader: I lapsed and spent the rest of the day watching videos on YouTube...)
It's the weather forecast, stoopid!
So it's forecast to be the hottest day of the year. We've walked the dogs and and breakfasted every man, woman and beast (and other). J's been asked to travel to the west of England for work tomorrow (which is utter madness) and is concerned about tyre pressure, the risk of mechanical and tyre failure forefront in her mind, and her idiot bosses have called a meeting for the hottest day of the year.
Today they cancelled it.
I always wonder what takes these people so long to figure shit out. The meteorological centres use some of the biggest computers in the world. It's for our benefit. Why leave it to the last moment?
Fyfe and I are due to start a project in Teddington and we're sensibly taking Monday and Tuesday off as it is unhealthily hot to do any manual labour. Many's the time I've worked in 30 degrees plus. You take on gallons of water and you sweat it all out - your t-shirt ends up white with salt - and in the evening you finally do a very low yield of pee that looks like creosote.
Very few things are worth that amount of toil - I'm not putting myself through it when it's not a matter of life or death.
I'm keeping cool by closing the curtains in the morning and keeping the doors shut. Leaving the windows open with the sun streaming in and you'll be as hot as it is outside. Makes sense don't it?
Second week of the holiday. It started badly. We discovered our cottage was on a main road with barely a pavement separating the house from the road. Nowhere to park to unload our stuff, including shopping for the week. There is a pub opposite our house which everyone told us was great. So I parked in the pub car park to unload and started doing so.
Pub landlord comes out and points to the painted sign on the tarmac ‘Pub patrons only”. I said yeah, I’m sorry - I’m just unloading as you can see and we’re here for the week - we’ll be in the pub later.
If you haven’t got a pint on the table right now, move your car.
I said I’ll be down your pub later.
Then a lecture about holiday cottages spoiling the villages; hey, I get it. I agree with you. But can you not just…
No.
So I go to the hotel carpark, book the car in for a week, and shlep all the stuff 100m back and forth from the car to the cottage.
And after that I never went to his pub. That’s the deal.
Fight Club
I seem to be having particularly restless nights, waking numerous times, the duvet everywhere and some insane dreams, involving anyone and everyone in my past who I feel I have unfinished business with. People I worked with, old school friends, old school enemies and so forth.
The dreams are sometimes quite extreme even by the standards of the horror/slasher genre.
You know that every morning I wake up there is a nugget from my past, embedded in my consciousness. It’s usually something where I felt embarrassed, behaved selfishly or upset someone, or spoke or acted inappropriately. That kind of thing.
Inner me.
(I’ve come to realise I probably am on the spectrum: never knowing how to act or having the confidence to be myself. Always looking to emulate or even copy others to try to fit in and be socially accepted, and mask my social anxieties and hang-ups. Even my chosen profession of stonemasonry is all about copying, in this case the work and designs of people from the past.)
It plays on repeat in my mind, until I think I’ve rationalised the situation: what I said, what I should have said, what I could say to the person or people involved now, face-to-face. Should I apologise? Do they even remember? Should they apologise? And on it goes.
And just when I think it’s all gone away it springs up again. It’s particularly hard at the moment. I shout out ‘Fuck off!’ for it to go away, sounding like I have Tourette’s or Schizophrenia.
I also feel more and more detached from everyone, and I think they realise that I am drifting away. I shouted impatiently at them the other day.
I wouldn’t have done that the previous holiday.
Pass the SALT
Apparently I said a few sentences the other morning with all the meaningful stuff missing. I was trying to describe an angle grinder my mate bought from Aldi and nothing made any sense to anyone. That’s pretty worrying as it would indicate I need a Speech and Language Therapist (SALT).
A big day of Neuropsychological tests on my return home. This will be an exhausting day but worth it.
I hope.
Walks
Despite the negative bits it’s been quite nice so far, but the first week was especially good as we were in Keswick which just feels lovely to be in, and we were staying with J’s sister and husband who are great.
This cottage is nicely furnished but the village is bleak, stark. There is no warmth here.
We did a big walk yesterday and some good ones last week, but little Stan has hurt his paw 🐾 so I’m staying in with him and it also gives me an opportunity to write this.
You’ll be pleased to know we did go for a little walk together locally and he did a massive 💩.
Nice guy up the road. He has a spaniel too. We used to stop and chat. Have a middle-aged bloke moan. All good natured. I saw him the other day. He said "Hiya!" and turned right to go up the main road. I'm pretty sure that's not the way he intended to go as the park entrance is on the adjacent road, where he was originally heading.
I don't think he wanted to make contact.
I've had that on social media too. People I thought I had a long history of friendship with: those friends and acquaintances separated by distance or time who you knew really well back in the day. You'd been through formative experiences together, helped each other, fallen out, fallen back in; all the stuff friends do.
Silence from some. I can't help but feel disappointed when that happens.
A few people (and they are a minority) didn't send me a text or post on Facebook when I did my dramatic "Notification of Dementia" Facebook post back, whenever it was.
One family in particular really disappointed me by an almost total absence of communication.
I guess some old friends probably feel awkward, or they may be thinking well, he was always a bit of faux-pas merchant or a loose canon; he must be bloody mental now.
Or simply 'what do I say?, 'what can I say?'
That's me on the left and you on the right.
The fact is I haven't changed markedly since we last spoke. I am going downhill in many ways, but not so as you'd notice. Not superficially at least.
I still read the paper, have an opinion on almost everything. Yeah - still the same.
Just more emotional, forget words, absent-minded. That kind of thing. Can't do noise - children's birthday parties would be hell.
I was having a chat with another dementia sufferer yesterday. I'd wanted to make contact with her for a while as we were diagnosed at the same time and with the same type of dementia. She's bright and opinionated (like me!) and about my age too
I thought it would be valuable to share our experiences and how we cope with it all.
She said she goes through periods of sadness about it - the slow conveyor-belt toward an undignified death, what it's done to career and relationships etc.
Likes a pipe, does our Jacqui
I too get sad about it all, especially what it's done to my relationship with Jacqui. The core has been eaten and we are just left with a hollow middle. Outwardly it looks like a marriage but long ago the heart had started to erode. We have had separate beds for a couple of years now (maybe longer). When we stay away or have friends over we bunk up together like old friends would. We still love each other, go out, share the chores, do the things old couples do, but the other aspects of our marriage have gone.
And that does make me angry.
I can't blame what's happened to us entirely on the dementia. And having dementia doesn't mean I'm always to blame when there is an altercation or disagreement. But it certainly doesn't add anything positive to the mix.
Zero-challenging work
I keep saying this will be the last job I do. I've been working for 8/9 days on a church in Barnes. That one. It was very straightforward work. The physicality was a bit of a shock to the system, but the tiredness I'm feeling is not physical, it's mental. Mental tiredness for doing a very straightforward bit of grunt work.
It takes that much out of you to accomplish what in the past you'd have considered an easy day. I can feel pressure in my cranium - as though I need to trepanate myself to let the steam out.
So glad I went private
So I end up flopping around the house for a few days. If I feel better the next day I try something out. Yesterday (3 days after the last full day of work) I wrote some of my D&D adventure. It went really well. As soon as I knuckled down all the thoughts and ideas that had been festering/gestating (take your pick) all poured out onto the page and made sense. Quite a few typos...well, mainly typos in fact, but I corrected them all and I can't wait to run it now.
Going to have a look at some more jobs next week. Again, straightforward jobs. Someone asked me if I was only taking jobs if they provided the right challenge. That sounds like something you'd say in an interview. I would answer that I want jobs which provide almost no challenge whatsoever. Those are the jobs I want.
I puke when I read posts on Linkedin.
Vampire
I've become rather averse to bright light (as this headline would infer). In the beginning (Biblical reference) there was noise. The noise is a pain. It's difficult to filter out. Like a single track recording of 2 separate sources, they intertwine to become one incoherent jumble.
I noticed when I was on holiday a year ago in The Lakes that if I was in an old dark pub I could filter out noise and concentrate on conversations far better. When we were standing outside with road noise and sunlight I found it almost unbearable, like my senses were being overloaded. Maybe this is what people on the autistic spectrum experience.
It may be nothing to do with dementia whatsoever, just deterioration of my eyesight. No one else when I mentioned it in our dementia support group suffered with this.
I met an old acquaintance at a party a while back. God it was a difficult night. So many coked/pissed-up people. It was in the West End. Coke is super popular everywhere these days. It’s a total bore. People on coke are the biggest assholes ever. There’s an arsehole-osity about every drug, but coke is the worst. It turns any decent person into the biggest twat ever, full of themselves and bursting with stupidity and obnoxiousness.
It was a difficult night of bizarre human behaviour and of enforced interaction with said humans.
I had to leave the place several times due to noise and general busyness of humans. One woman recognising I was mad (as I ran out shouting) kindly asked me if I was okay. That is the first time that's happened.
I met lots of people from my dim and distant past. One was Xxxx.
Our relationship had been one of falling in and and out with each other all our lives. We’d clearly had enough of each other by this point as we aren’t in touch nor want to be. I told him in some form of confession, that my frontal lobe had probably never been all that and that I’d never really known how to behave, hence the huge drunken faux pas, the devil’s advocate in me, and other non-normal behaviour. He seemed to concer, as though he’d always realised and it seemed like some kind of understanding or nod of acceptance.
Don’t get me wrong. I know him so well and know all his tricks. But I’m assuming he knows mine so that’s fine. It was an interesting culmination of our acquaintance and mutually intimate knowledge of each other.
It was a nice way to part company.
No News
I’m no longer allowed (J says!) to read the news. The Frontal Lobe being what it is I get so wound up with things - things from my dim and distant past, or something I read in the papers, particularly about the current situation. Stuff just boils over in me and she’s worried it will get me into trouble.
To be honest I care less these days, hence my previous post. Thing is I think these arseholes should be called out. But I take on board what she says too.
It’s a fine line writing a blog while trying to be confessional, warts ‘n all, and also being economical with all the truth. It affects other people that you care about.
As Phillip Roth said, ‘When a family produces a writer, that family is finished.’ It certainly was in his case. I want to be that, but I know I can't be.
I think there's a level of cruelty needed to be truly honest.
Return to Contentment
Yesterday I ran a game at The Willoughby. It was an old easy-to-run vanilla dungeon. I kept the numbers small and was very strict about who the players were. We started at 2 and finished at 6.45pm. I had a good time and so did everyone else. It was a pleasure to DM and it played really well.
I think we were all due a good fun session as we were all in a parlous state in one form or another.
And now the weather…
Today it’s beautiful out there. Frosty and a blue sky.
I’m really affected by the weather and I love cold frosty mornings. They’re just beautiful and lift my spirits.
Miserable, wet cold mornings mean working outside and perpetual cold and misery. Work sucks.
Bright mid-summer mornings give me a shiver down the spine as it’s exams and I haven’t revised!
Gloomy dark mornings mean the 1970s (Winter of Discontent power cuts etc) which is also Stoberry Junior School - a pretty happy time for me. Though not the Infants School. No. That was hell. That’s a sunny memory.
I don’t know if anyone else equates weather quite like this.
A friend was running a complex game Before Covid (BC) and there were up to 6 players at any session. The game was fantastic; everyone loved their characters and the vivid world they inhabited and how both the game and the characters were developing.
Since coming out of Lockdown there are just 2 of us. The dynamic of the game for us just didn't function; it required more players for it to work and for other players' input. It felt like we were putting more effort in and getting less out.
I sent an email to the Games Master (GM) to tell him how I/we felt and that it wasn't working for us and why, and that we would still come to the club but do a manageable board game for the evening instead.
He's a sensitive chap and he's taken it badly. He always wants to be the GM/DM and doesn't really like playing. He often wants us to play games he's invested in, but we don't, and it's difficult. When you play a new system the rulebooks are needed for you to understand the mechanics of the game. Whilst available as PDFs most of us prefer the actual book. Bear in mind each D&D rulebook is around £30. That's a potentially significant investment. And then there's space, which for a lot of gamers is a bit of an issue.
And it takes a long time to learn these systems, which can be incredibly complicated even for experienced gamers.
D&D Manuals
I'm being more truthful to people these days, since my diagnosis. Now I definitely have less time on the planet I've come to the realisation that I should say how I feel.
"I'll get my own as not everyone is buying their rounds"
"I don't enjoy this anymore and I think we should try something else."
Non-emotional, factual expressions.
When I worked in offices I would have discussions with colleagues and at meetings would express how the group felt, only to find that everyone had taken a step backwards and were staring at their shoes.
Thanks guys.
Well it's me myself and I and life is very finite, so I am going to tell you what I think. In the past I used to hold onto stuff, being poor at confrontation, and these things would well-up inside of me like a volcano, then burst out like the big bang. I didn't know I was being rude and aggressive, but people told me I was. Nowadays I'm just going to let it out as quickly as appropriate and the results are proving much better for everyone.
It's taken me 52 years to work this one out.
The Lucid Bit
So I'm feeling really bright and compos mentis at the moment. It's great. I wasn't sure I'd feel this good again. I think it's because I've rested my brain from too much D&D writing!
Last week I visited my parents. We were having a conversation about wills. We normally have conversations about wills when I visit. They explained everything to me about the money and so forth (I find talking about money so boring) and I understood it. But there was something bugging me. I left the room, just to gather my thoughts. How can I tell them? No. There's no way other than to just tell them straight.
I came back to the table and told them they may outlast me, and there was no point in having this money if I was in a state where I couldn't use or benefit from it. Now this is something no parent ever wants to hear from their child, no matter what their ages. But this is the reality that people in our situation have to acknowledge. This was obviously very difficult for them, but I couldn't see any other way of telling them and it needed to be said. If I hadn't said it it would have been bugging me forever.
We came to an understanding and everything is fine. I'm so sorry for my parents having to deal with this crap so late in their lives. It sucks. But we all have to accept reality.
There are days I wake up and I think, this is going to be a sunshine day - and then there are days when I wake having dreamt I live in a dreary flat with flatmates I don't know and we pass each other without any interaction, any warmth or connection. Many of my dreams are a version of this scenario. Today I woke up feeling pretty lousy. Hey, It's a Monday after all, and I hate Mondays. But this is different.
Unconscious bias
The recurring themes of these dreams are isolation, detachment, withdrawal, loneliness. It's not the best way to start the day.
But this is the reality of FTD, and maybe other dimensions... I mean dementias. (Keep doing that!)
It's a detachment from those we love, our fondest friends, our nearest and dearest. The invisible chords that bind us just dissipating every few weeks incrementally but significantly enough to notice. This is the worst part of dementia: the fact that we become isolated. Somedays you feel it more than others.
Mondays are especially bad for it.
Procrastination
So after the storm I'm looking at the garden. The derelict shed we have. The thick polythene I stuck to the roof to keep it going was finally torn off. Now the shed is in all its glory - the rotten boards, the broken window, the torn roofing felt. And the tree. The tree that fell down 3 days ago.
I just stop myself looking at it as it's depressing, so I come back in here to watch TV. Later I join Jacqui who's having an early lunch and apologise for doing nothing about the shed. She's fine with me being useless, which whilst being a let off, makes me feel worse in a way: the fact that I'm not much use anymore being verified by my wife, who is resigned to it all.
Harmless, really
I thought I would write and prepare more of the campaign for the Monday evening crew (The D&Gers), but it didn't work out that way,. Headache and some knotted muscle under my shoulder blade adding to the feeling of general crapness.
We did walk the dogs this morning which is always good. It's a nice start to the day and gets the oxygen flowing. It was still really windy, which both the dogs and me really enjoy.
But while I changed a couple of things and did 10 minutes of work admin I'd avoided for the last week, I then watched Louis Theroux docs and a documentary film on WeWork, which was a cultish office rental business for millennials. It's fascinated me for a while, but the documentary was a bit supine really. I was expecting it to be more like the Fyre Festival film.
So I've just been trying to keep out the world's way for a bit. I shall attempt to rejoin as soon as practicable...
