Average post about dementia

An Apology

I know these posts are becoming more irregular, the quality goes up and down, and they also reflect my mood (so I've been told).

My day consists of walking Tomos, meeting the other dog walkers, letting the dogs play, then going to the pet shop where Tomos jumps onto the counter with both paws so they can throw him treats. We then buy a dried bit of an animal and go back to his home where he munches that part of the animal.

I come home, and make myself breakfast (smoothie, coffee, porridge with a teaspoon of honey) and then catch-up with the news and YouTube subscriptions. 

I might even perform my ablutions...

Buying food, some chores around the house. Then  watch reams and reams of YouTube. If I'm doing chores I listen to Times Radio or The Rest is Politics or Page 94  -the Private Eye podcast. If I'm shopping I just have the noise-cancelling on and nothing else as you'd be amazed how loud supermarkets are - the chatter, the air-con units, the trolleys etc. 

I no longer have a subscription to The Times but I like the radio show as it features some of my favourite hacks - Matt Chorley, Giles Coren, James Marriott, Rachel Sylvester among others. It can be very funny.

I am actually reading The Guardian. I also watch John Harris who I've seen speak at one of those posh festivals - and he just goes to small towns and talks to people in the street about what their concerns are. He's so personable and unpretentious - he just gets people to unload. He's quite brilliant at it.

So what have you been up to then?

Gosh. Er, I'm not sure. I'll have to look it up on the calendar. 

Erm, not much it would appear. 4 game sessions last week, looking at buying a gaming computer but can't justify it, watching YouTube, and 2/3 nights of heavy drinking. Not big or clever. At least I'm not drinking at home anymore.

This week I have been doing lots of gaming - 2 sessions on Wednesday alone - and running my Thursday group. At the beginning of the session I couldn't remember the last location the party were at so I went with one and got it wrong - they'd killed the giants a two to three weeks previously.

That was a bit worrying. Making new memories is, you see.

So it wasn't the greatest start. Everyone seems to love the role-playing bits, so I can get all RADA about it and camp it up.

Making up daft names and basing the characters on other kids' mums from school, amalgams of people I've met and sometimes just putting a few traits on a piece of paper and assuming a [silly] accent.

One example is I'm using Mrs Sxxxxx as a rather scary Tiefling (cambion) Wizard called Avarice. She speaks to the characters in a rather emotionless Thames estuary monotone, constantly berating them for their failings and general incompetence. 

I should have done acting but I was so incredibly oversensitive as a child I could not bear to be made fun of, so I daren't expose myself on stage.

So I'm doing it now. It's nice to improvise  - I wouldn't be able to memorise a script anyway - especially now.

What I SHOULD be doing

I should have performed my ablutions already, that's for certain.

I should be making notes on Icewind Dale  - this has become procrastination No1 for weeks now.

I should have replaced Nerys's sills.

I should be doing more chores around the house.

I should be reducing my drinking even further.

I should be more careful when I'm out and about. But I love socialising and when the mood takes me I don't want to stop.

I should manage it all a little bit better though.

Rediscovery of the Week

Then I found this - from Around the Horne - the super-popular 1960s comedy radio programme. I always loved these camp comedians from this era but especially our Kenny. 

An autodidact, but a really troubled, conflicted soul, who was disgusted by his homosexuality, he could be utterly charming and hilarious one minute, then utterly vulgar and cruel the next.

He read lots of stories on Jackanory and he was spell-binding. And also the Carry On films of course.

I love his word play and erudition, his voices and outrageousness. Poor bugger. 

We don't have characters like that anymore.

Thought for the day

A therapist is someone you pay to tell you that you're right and everyone else is wrong. 

What now then?

Why this blog is rubbish

I read the other day that most good art is created by flawed individuals who may be in a bad place. Some examples would be Larkin, Picasso, Caravaggio, Liszt.

And there is that current conversation of separation between art and artist: do we take down the Eric Gill because he sexually abused his daughters? If yes, do we take down the Caravaggios because he was a murderer? The difference is surely how long ago these things happened. If the 20th century it's more pertinent. If it happened now immediate expulsion. The 16th century? Doesn't matter!

I do find it genuinely easier to write when I'm in a bad place. My ideas just flow out of me, like thought-diarrhoea. And I'm as fucked-up as Philip Larkin, but I just don't get angry any more.

This post has taken days to get going.

The thing is I'm trying - and often succeeding -  to live in the moment and notice beauty and warmth and pleasure. All the easier while I have no capacity for planning (or indeed facing the future) anymore.

I have so much time I can use what grey matter I have left to take on big ideas and watch and listen to footage of the likes of Christopher Hitchens and Werner Herzog. 

I've always like the company of intelligent people.

What was I saying again?

Gut-buster

I'm fat again. It's sugar. Sugar in biscuits, sweets, beer. I look bloody awful, and my jeans have never been tighter, and yes, I do wash them at 30', so it is me.

I've felt really indulgent recently, and the new Lidl is amazing for biscuits and being me I want to sample all of them. 

I tend to drink alcohol on Tuesday evenings and at the end of a D&D session on a Sunday - having drunk zero-alcohol beer up until then, to keep my struggling brain as functional as possible.

I need to be more disciplined. I yo-yo these days.

Favourite Dinner party guests

Mars Bars are the most popular confectionary. The reason is they are sweet, and not much else. And the textures are easy on the gob. Is it the best chocolate? Of course not; I wouldn't even describe it as chocolate. 

But it's the most popular. 

I use this particular metaphor to remind people that popular doesn't mean best. It often means least offensive.

People who I would love to have met, who may not have got on so well at a dinner party would certainly offend a lot of people.

Frank Zappa - highly difficult music, very intellectual guy who interspersed his music with offensive words and lyrics. The man who put the sneer into rock and roll. Huge output of music from large orchestral pieces to self-indulgent guitar solos, with incredible songs using multiple key changes, meters and improvisations. Check out the band he had in the early 70s with George Duke and Ruth Underwood. 

Werner Herzog - auteur director and actor. Made feature films and documentaries, usually of individuals trying to achieve something in a world that is alien and hostile to them. Aguire Wrath of God, Fitzcarraldo, Grizzly Man. He is fascinating to listen to, and the stories of the making of his films are as fascinating as the films themselves. 

Andy Kaufman -  a performance artist masquerading as a stand-up comedian. The joke is on you. And if you don't get the joke, at least Andy is laughing. Also Elvis's favourite Elvis Presley impersonator.

And why do I admire them? Because they're mavericks. They followed their vision without any compromise or tangents. I realise they're very Marmite (adj). But mavericks tend to be. 

You may hate them, and that's okay.

By the way, I am the antithesis of a maverick. 

My Current Addictions

So much news going on and so much of it terrifying. I've found CNN is the best one in the States: Fox is rabid, MSNBC horribly smug.  Thank goodness for Sky and BBC and C4 in the UK. And left and right criticise them.

My list of top news stories is as follows:

Trump. This is huge. America split down the middle. And I fear this could end in a civil war, the implications of which would be profound for America but also the rest of the world.

Ukraine: Belarus is about to install Russian nukes and Medvedev is threatening to sever the info cables under the sea that connect us to each other. This could be the start of Cold War 2. But is Putin desperate enough to actually go ahead? We (collectively) in the West certainly didn't trust the USSR back in the day (some of us didn't trust America either) and I see no reason to trust Russia/Iran/ChinaNorth Korea now.

Starvation in North Korea. This is a country that can't grow enough food to feed its 26 million inhabitants and there is a starvation there that echoes the starvation in the 1990s. Compounding this is the fact that the leadership is spending money it could feed its citizens with on its nuclear development program, and has stopped importing food from China. In fact over the last 3 years it's closed its borders and expelled foreign citizens to the extent we only know what's going on there from the few people brave enough and canny enough to have communications with the outside.

B Johnson is dominating the front pages in the UK but this story is a footnote. If you haven't already realised that to him the truth is an irrelevance then you should probably get some therapy. 

Buffoon.

Swatting

I always hated this time of year as it's exam weather - the most brutal time to be indoors for days swatting away. Seeing as I never could get down to any effective form of revision, and would always get sidetracked, I have always hated exams as the stress I endured was awful.

The Executioner.

This is all a pathetic attempt to try and make a pun about swatting as now I'm running round the house looking for flies (for some reason we get a lot of them here) with this bad-boy (pictured). And it's addictive.

However, this farcical attempt at a joke is not working and probably was never going to.

Sorry. I'll go now.

Trying hard not to be a burden

Every Day is Nostalgia Day

My sister came up to visit briefly, in order to go to see Abba (second time for me). 

It's an extraordinary thing. Mainly middle-aged people; some older, some younger. Everyone in a party frame of mind. Many dressed up. 

The journey there was stressful only because of my condition. Once you get there it's a really lovely arena due to its pleasant staff and the calming environment of the foyer's wooden interior.

It's easy to dismiss, but this Abba show means something to people. It's the happy-sad Swedish nature of the songs - but also the time it was created. The 70s may have been bleak socially and economically, but it was very creative musically. And it was my childhood. There's a certain poignancy about the Abba songs that best reflects the time, in my opinion.

At the concert everyone stands up and dances. Especially the 'David Attenborough' guy (as my sister called him) in the row in front of us, though thankfully a few seats to our left. 

Luckily the people directly in front of us looked really square and lived up to expectations, not getting up from their seats until Dancing Queen, giving us a clear view.

So we're in the arena, sat down -I'm  feeling happy, nostalgic, sad. Such a mixture of emotions. FTD has given me a sense of melancholy - that I somehow long for my past, yet much of the past I remember is a past that admonishes me.  

I sit in cinemas watching Star Wars films with tears in my eyes throughout the whole movie, glad no one else can see me. Like a time-traveller, I switch back and forth from the present to the little boy in Swansea Odeon next to my big Dad, watching the whole film through a C-3PO mask.

I'm living my life in multiple time-lines. Everything has a resonance to a previous age - anything at any time can draw parallels with past experiences and I'm suddenly in a classroom getting told off and crying, or being a total shit to some poor girlfriend; it can be anything. The emotion generated is visceral. I cry out, swearing.

'Why are you here? Let's get back to the present.'

At last, that calm inner voice.

And I return to the present moment. Having done a Mindfulness course I'm 'mindful' enough to acknowledge my awareness in realising where I was in my mind and having the ability to return, and I give myself a pat on the back for doing so.

As an epilogue, my sister loved the Abba concert and I loved it just as much as when J and I saw it back in June.

Just as well as I'm going again in 2 weeks! 

"That's all I can see is green stuff!"

Those wonderful people at RDS have organised 6 Monday morning sessions at the London Wetlands Centre in Barnes. 

Yesterday was the second session.

Thankfully after the horrendous storms we had on Sunday, this was the breezy, bright Autumn day we needed.

We were encouraged to embrace nature. It was too far for me to go barefoot in the grass, and I've never been one to hug a tree. But I do find them enigmatic and mysterious. I've always been fascinated by what goes on under our feet, and it's only recently we're starting to discover the communication between trees and fungi.

Charlie and Raksha gave out notebooks and information leaflets. In order to give back I took lots of A-levellish photos with my iPhone. I have a ton of pro-photographic equipment which I have barely used for years as you end up being a photographer when you really should be experiencing being in the moment with nature. 

Twats.

Rather like the people who go to a concert and video the whole thing. They're missing out on the experience in order to get a third rate recording of it.

The title of this comes from a hide we were in. A dad was showing his little boy how to use the telescope to see the wildfowl. The boy was struggling and said "THAT'S ALL I CAN SEE IS GREEN STUFF!"

Made me laugh anyway.

Am I a burden?

J's having a hard time at the moment dealing with it all. Work, the future, the house, kids, the dogs, the past. I always think it's me and me alone that's the problem. I think of myself at times as the constant reminder to her that she made the wrong decision in marrying me. She asks all my friends and they say - no - he was always like this.

Thanks.

Really constructive!

Let me break this down. 

I have never been the easiest person. I am relatively thin-skinned, I am quick to anger, I am a total coward when it comes to confrontation...blah blah blah. Posts passim

However, in my 40s I had become a lot calmer. More thoughtful. Always trying to become better from my 30s, I'd read lots, been on courses, had therapy. None of us are the finished article. 

It is so hard. I have tried to get a thicker skin, be more calm, be less outspoken, think more about proffering my opinion etc.

When I met J I was in a good place: a more mature and less abrasive me. 

Then FTD. Oh the irony.

I became angrier again; with myself, with the world. Temper frayed, my intolerance worsened. My faux pas knew no limits.

I can hear my Mother's voice: 'Leopards don't change their spots!'

While an addict suppresses their addiction, the addiction is always there, and like a dormant volcano it can occasionally spring back into action.

I can't tell you how hard it is to keep it together all the time. If something angers me and it can be anything - the coping mechanisms I've created and deploy you would not believe. And it is really hard work, which adds to the tiredness people with dementia experience the whole time. Even a couple of days on holiday are tiring - and that's just talking to people you know.

So just remember that I am having to consciously deal with anything life throws at me now - when all of this used to be done unconsciously.

I am trying so hard not to lose who I am - to lose the best of me. 

I don't want things to be like this either.

Drakkenheim Continued

Sunday - a 4 1/2 hour DMing session. We had 2 special guest stars, Larry and Adrian from the other Drakkenheim group (from the games holiday) who met the Sunday players at The Bark and Buzzard Tavern in Emberwood.

From there they went to The Rat's Nest Tavern and and into the burrows, managing to defeat the hoards of Ratlings (2' tall bipedal sentient rats) and the Rat Prince and his Warlock. On the way back they chanced upon a wailing from a ruined house. It turned out to be a wretched ghost or in this context, a Warp Witch. On defeating the creature they heard a clapping behind them. 

This was a strike team of The Queen's Men - sent to duff them up and take their magic items away. 

However, by the skin of their teeth our heroes prevailed. It was a really exciting session in a really vivid setting of a shattered city, its characters and lore. 

I'm really looking forward to the next session.

My Monday session with a different group of players and the world setting is markedly different. Their characters are much higher level and are unfortunately going through giants like a dose of salts. D&D is very difficult to get the balance right at times.

And it's very tiring too, but worth it.

Quaint little hellhole

 Vanless, clueless

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.

Maybe in the next life.

Further Notes from Dementialand

Pub Landlord

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 💩.

Benjamin Buitoni

Reversal/Nostalgia

So I'm going backwards. I'm obsessional about Dungeons and Dragons - a game I played as a teenager which I recently took up again (as a lot of people have done) when the latest edition came out in 2014.

I've got back in touch with old school-friends as they were happy days for me. Precious memories. 

Well, the sixth-form was at least.

My favourite group is now Abba. As a boy I hated them, though did I secretly like them? I don't know. I remember thinking they were soppy as they sang about love and relationships. I was 12 when they split up, so I guess I was too young and/or the wrong sex. 

For some reason their music completely resonates with 52 year old me. Björn Ulvaeus says there's a happy/sad that that's part of the Swedish character, and that is very prevalent in their music. Lots of other studies show that the verse/chorus patterns and the sing-a-long-ability of their songs also resonates in our brains.

(However, some of the songs are deceptively difficult to sing and the harmonies very, very difficult!)

Jacqui and I are going to see them on Sunday. I'm wearing my sunflower lanyard for the first time as I think I will be an emotional mess. The concert is apparently incredibly immersive and emotional. 

I don't think, I KNOW I will be an emotional mess.

NOT holograms. Okay?

Dining Realisation

Last week J and I went for lunch in a lovely restaurant in Surbiton. We were the only ones when we arrived. Some soft funk/fusion music played in the background. It was really agreeable.

We hadn't been for a meal like this since before lockdown.

I was very much in the moment and realised how much I'd deteriorated. So much visual and aural information bombarding me. My brain foggier than ever. Smiling Jacqui in front of me looking so pretty. I was happy but I realised at that point I have about 5 or 6 years left. 

My grandmother used to say stuff like that at Christmas dinner. Lol. 

This realisation didn't make me sad. Those things don't anymore. It's just the way it is.

I'm DEFINITELY retiring after the bay window in Teddington (scheduled for July 22) and liquidating the business. Time to find something else to do, and enjoy what's left while I still can.

Lazy

One part of the realisation above is that I'm finding it harder and harder to motivate myself.

That feeling you get when you know you should be doing something but you're doing nothing instead. When you think of all the friends you haven't spoken to for ages and you still don't contact them. I know that I should clear the back of the van, but I don't. I know I should vacuum the house, order a skip, chase up the DVLA etc etc.

Nothing happens.

I should read that particular book in preparation for Sunday's session. 

I just about manage to do this, still.

I know, I know. You do that exact same thing too. 

Sure you do.

You've been avoiding me.

Remember me? 

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.

(And the rest, but I won't go into details here.)

But it would be nice to see you. 😜

Back to work

Angry (again)

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 didn't mention the protruding canines did I?

Executive functions offline

 Sales Prevention Officer

So here we are in BST 2022. It's always a shock to the system for most of us, for the first few days, as our bodies adjust to getting up an hour earlier. I don't know why it's such a big deal but it is. I for one feel no compunction to do anything except ignore people asking me to do stuff. While last week I was all get up and go and task-central this week will be one of reading and quietness.

"I have a large crack in my threshold stone." I couldn't care less.

"We would like you to quote for reinstating a bay window." Where are you? "E17." No.

"We are wishing to purchase a property and were wondering if..." No.

"Can you...?" No.

So this is a small part of running a small business - marketing, managing, logistics, the job itself and ultimately sales prevention. It's ultimately why I'm quitting. 

I can find myriad reasons why I won't be attending to a broken paving stone or cracked paint or to and fro with a customer for weeks while having to justify a fair price for something few people have any idea what's entailed in creating (a bespoke product costing £1,500 in raw materials before we even start carving) yet I'm apparently expensive, while the same customer is prepared to pay 10s of thousands for poorly engineered bifold doors or polluting cruises in the Sargasso sea. 

I don't get it myself.

Zen and the art of bugger all

I guess this is down to the old Executive Function thing of FTD. (Nothing to do with being a miserable sod!) I'm told I have to be kind to myself and not expect too much. So this morning I've bought myself a water filter, a present for my sister's birthday (I asked her and ordered it online so it was no effort at all) read the parts of the paper I wanted to read (decreasing by the week) and am trying to get my head round some statue thing we've got on the go. Can't bring myself to do anything about it though.

This latter is the sort of thing people do in a coffee break at work. On days like today I get nowhere fast - it takes me all day to accomplish almost bugger all. 

I actually feel relatively normal. My head's a little foggy but my typing is okay, it's just that this is all I'm capable of. 

And you're probably thinking, why bother?

The Most Boring Place I ever Worked

People are often surprised when I tell them, but after leaving a company called Chorion (a rights-owning company) I temped for a bit before I did my photography course back in 2006. 

I was a PA (believe it or not) to a very nice guy (the only decent boss I ever had outside of masonry) at the Discovery Channel. He was responsible for something I've completely forgotten about.

Anyway, a lot of people worked doing the networking for the various channels. Their job was scheduling all the programmes for each channel. Some days the networking people would just do 'Fishing Day' and alternate say 2 different series for 24 hours. Or 'Gun Porn Day' where some psychopathic ex-special forces Yank wanks on about the development of bullets designed not to kill but to maim. The schedulers were guided by charts and some fairly sound data, but it wasn't rocket science by any means. And the people working on it weren't the brightest bulbs in the box.

2 women used to sit opposite me. One would always be late and when she arrived the pair of them would discuss yesterday's episode of Home and Away (great programme by the way). It would last longer than the programme itself. Aside from this, on the average day I had about 20 minutes of work to do. 

There was nothing to do, but at least it was a zero-stress environment. 

One time I was so bored we had some flat-packed office furniture arrive. Rather than wait for the men in blue overalls to arrive and assemble it I found a screwdriver and did it myself for something to do. One executive said "Gosh Geraint, you're wasted in TV!" She meant it as well.

Unfortunately I think I drove myself nuts there, along with maybe some other people. 

Definitely some other people.

How did you get on at the office dear?

They asked me to leave on the last day before Xmas! They must have hated me! 🤣🤣🤣

Actually, being fired or sacked or made redundant has been one of the great blessings of my working life. I've always found better work opportunities after those events. I learned that if you don't fit in then don't try to detain yourself in that workplace - it ain't ever gonna happen. 

I came back to masonry to tide myself over (much less awful) and photography, just as the rest of the world decided to do it too.

Masonry it was then!

Maybe with my daily 20 minute attention span I could get a job back on The Discovery Channel? 

You shall not pass!

Help, I'm becoming Toby Young

 One thing about FTD is that you end up with no friends as you piss everybody off and when you die no one comes to your funeral. With my last couple of blog posts this aspect of the disease is coming more to fore. I find it hard to not fixate on certain people and I care less about what others think - not that I care nothing - it's that I don't understand immediately why something is offensive or how it could be hurtful.

So I deleted certain content about one particular person who I'd begun to hate as it's totally counterproductive to this blog and what its original intention was, which was to help people understand my neurological condition.

Jacqui and I originally had a name of the dementia - we called it Piers (as I dislike both Pierses Morgan and Corbyn, it made sense) and it enabled us to laugh about it, making the distinction between 'me' and 'it'.

Recently it appears that Piers is trying to dominate Geraint. This has been pointed out to me in no uncertain terms by J. 

Now I get it. Henceforth I'll make a concerted effort to look for the signs and try and head him off at the pass, Gandalf-style.

Ya Balrog bastard!

This is the reality of FTD. It's the nasty vicious side of the disease; the disappointing sequel without the laughs. 

I'm not looking forward to this or the effect it has on those around me. I have to try my utmost to recognise the signs and develop coping strategies. 

It's getting difficult.

Pick's Disease or Semantic Variant?

When we received the diagnosis back in December 2020 it was FTD Semantic Variant with a little bit of Frontal Lobe degradation. I now believe it's the opposite way round.

Pick's Disease as it used to be known, or Behavioural Variant (FTD BV) is when the Frontal Lobe which controls behaviour shows Pick Bodies and Pick Cells. The long and the short of it is that behaviour-wise it  manifests as apathy but also in impulsiveness and disinhibition.

It's the most common after Alzheimer's, which is a little bit disappointing as I thought I belonged to a more exclusive club...

The SV part is characterised by a loss of semantic understanding. I've mentioned before that if you ask me a point blank question like "What have you been doing this last week?" I stall - I can't think. I also grasp at certain words, but that aspect doesn't seem to have worsened in the last year.

For example yesterday, I ran a 4-hour long D&D session and played the parts of the characters. And then I came home and when I'm no longer in the zone I fire off a blog entry I think is really good and end up naming names and saying outrageous stuff and pissing off people I care about, as well as presumably those I don't.

I just need to retain a level of mindfulness about the here and now. Ask how my words could backfire. I know to others it's obvious, but it's getting less and less obvious to yours truly.

I'm a plain-speaking man, Mr Herriot

Bored games

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.

Mandelbrot Cat Syndrome

Mrs Malaprop, I presume?

Over breakfast, Jacqui said she wasn't sure whether Stanley had pooped or not when she took the dogs out. (Stanley is a dog by the way, not an elderly relative.) It made me think of the cat metaphor, where there is a cat in the box who may be dead but also alive and the 2 can be simultaneous in the quantum world, but what is the threshold where the quantum world is superseded by reality and once you open the box you have either a live or dead cat?

What's it called? I'm trying to think of it, and all I can think of is *MANDELBROT CAT SYNDROME. And I know it's wrong but I can't think of the real name for it.

Come on come on....type in 'cat physics'. Of course it's Schrödinger's Cat.

Reminded me of that scene in The Office where they're doing a pub quiz and the question is 'Who has been president of Cuba since 1959?', and David Brent said Fray Bentos, which has proven to be a massive spanner in the works. No one can think of the answer and people are super annoyed at Brent.

Leader of Cuba 1959-2008

It's true though - the actual answer is much more evasive after a daft but similar-sounding answer is given in its place. 

I'm going start assembling the daft things I say from now on. 'Dimensions' keeps substituting itself for 'dementia'. I'll try and keep a log of these. Another word is 'Initiative', which in RPGs comes up all the time, and I keep forgetting it and all that comes out is 'er, er, er, er, er, um.' I end up having to look at the character sheets as I know where to look for the word.

*DISCLAIMER: not strictly a Malapropism, but almost.

It's Christmas!!!!

Tomorrow I'm going to see my Mum and Dad and my sister and nephew. I haven't seen them for months. Christmas was a disaster for us because -  like many families - one of us got Omicron and it scuppered visiting. That person was yours truly.

Nephew (not sure I'm allowed to say his name online) is a top gamer so I thought I'd take some stuff down with me. He's a great lad and I really enjoy spending time with him. He knows his uncle has this neurological condition and he was really sad when he found out, and that made me sad.

Anyway, I suddenly felt Christmassy at the prospect. I imagined Christmas trees and baubles and presents opened with wrapping everywhere and smiles and laughter. 

That made me feel a lot warmer inside. 

When emoting goes wrong

Many say "Oh I do that!" and words to the effect of  "Join the club!" when I tell them I can't remember words or can't start a job, or get increasingly flustered at starting a seemingly mundane task.

The thing is yes, we all have our foibles that get worse with age - forgetfulness and so forth, and with some of us we go through our lives with that particular bar set quite low - common examples would be poor spelling and absent-mindedness. 

People say I started off quite high in many regards, but I know certain aspects were always low. For example:

1. my propensity to procrastinate for things I wasn't interested in (covers 90% of everything)
2. low- attention span
3. total failure to really embrace modern capitalism
4. intolerance for entitlement (the irony of living in SW London!)
5. intolerance for teenagers
6. intolerance for...(I could go on ad infinitum but will stop here)
7. occasional social faux pas - although I'm keeping the Dalai Lama's advice to say nothing unless it's better than silence (when I remember to...)

These have all gotten (even) worse in the past few years, apart from #3 which has always been a flat-liner.

People say "well, I was always a poor speller" or "I'm forgetful too". 

But when you could previously do things to a certain level and you see those abilities diminish, it's not really much comfort when someone says they were never very good at them either. It's done with good intent, to quell the significance of the problem. 

'It's just a thing.' 

'It's not the end of the world.' 

'I get on okay without it.'

But it is significant to you because it's part of who you are or who you were. And now it's going or gone.

Something you used to find easy or automatic is no longer the case and that can be very frustrating.

So next time someone in a chronic condition says they're having difficulty with something, think before you say something well-meaning as what they hear might be something different to what was intended. 

And this is intended for me more than anyone. I am the biggest hypocrite in this regard as I often say clumsy things to people I would never like to be the recipient of.

And finally...

I didn't want to leave on a sanctimonious note, so changing the subject...

...I hate this time of year as gloomy old Winter stubbornly drags its heels, refusing to hand over to Spring.

By February/ March we've all had enough of the gloomy, short, cold days and are eager for signs of Spring. The days are getting longer now, and the trees will soon be in bud, but like anything you're desperately waiting for it, takes twice as long to arrive...! So it was great to see all the daffodils are out everywhere, bringing colour and joy to our lives. 

Come on Spring, do your thing!

Hope

Sorry to bore you but...

Executive (Mal)Function

Oh dear me. 

This is one of those posts where I start writing not really knowing where I want to go. What did I do today? Well, I walked the dogs with J first thing, then I looked for my keys for over an hour, trying (successfully) not to get angry with myself. I found them in the box containing my toiletries. J's bought me a locator thing so I can trace them if...no WHEN it next happens. I know we all do it now and again but it happens with increasing regularity. It seems there are fewer compartments in my brain with which to multi-task. 

So after I did that I watched the latest Louis Theroux episode about hard right trolls in America, and then some of his other stuff, like the ones about Westboro Baptist Church. I am rather fascinated about cults and the psychology of how they recruit and keep their members.

Alt-right internet nasty person

I'm watching TV as it's safe. Safer than doing anything right now as I don't trust myself. 

As regards my view on Mr Theroux's latest programme, it's amazing how thin skinned and pathetic the subject matter are when confronted face-to-face. And none of them can produce facts to back up their assertions. Their whole shtick ranges from demagoguery to vile and pathetic threats and rants. They are a sad bunch of bitter people who would benefit from therapy. 

What a shame the internet enables their connection with other similar people.

Google Indexed me!!

I am now not only online but I can be searched on Google. These are 2 seperate things. If like me you are starting a blog, you fill out the form with your details, write your post, and you can send a link to people who can also see your blog on the internet. Brilliant.

However, being on the internet doesn't mean Google's search engine looks for you. It doesn't register your existence so it can't find you. Only by 'indexing' you - something you can speed up by requesting it - can you be searched for.

This was news to me.

Luckily a person I live with who can't be named for legal reasons, set this up for me as despite me complaining about them in previous posts, they are essentially a very nice person with a great brain. 

Thank you anonymous person.

Writers' Block

I've been writing a new part of my long-term Dungeons and Dragons adventure (known as a 'campaign') linking disparate modules (single adventures ) and trying to get a hook or hooks to stick them all together. I've got the overarching narrative for the next few sessions and it's all coming together in my mind. With every day the vision becomes clearer and clearer.

However, writing it is easier said than done. I look at my notes and just can't start to write it. I don't know why.

I'm also dribbling out of the side of right side of my mouth a bit more - a higher yield of saliva. 'Gusting!

It may be because I only slept about 6 hours last night. It may not be. I am tired though.

I notice these incremental changes and it’s a bit depressing to be honest. How could it not be?

Enough already.