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 💩.

Holidays in Dementialand

Pubs

I was doing really well. We’d had a funeral, 2 big walks, meals out. I had coped with all the new people, the crowds (the hustle, bustle, noises and so forth) and then after a not very good meal we decided to go to the pub nearest to the restaurant - the best pub in town too.

Suddenly lots of people. I thought it would be relatively quiet on a Tuesday. The people we were with knew a couple at the bar - they went back years. Hugs, bon homie, chitter-chatter, old friends and everything that entails.

Something in me switched. I can’t grasp what exactly but I went very silent, looking everywhere else but the conversation. I went outside for 5 minutes but that didn’t do anything except leave me feeling colder. 

I guess I was hoping the four of us from the restaurant would be on our own having a quiet chat. I just wasn’t expecting there to be new people joining us. I don’t know why this is so difficult. It seems I slip a gear when this happens and can’t get going again. 

I guess I don’t cope well with the unexpected anymore

So I stayed there, in that space.

The old me would have tried to join in the conversation but like a roundabout going too fast I just couldn’t get the timing right to grab a hold and be part of it all. Nor, if I’m honest, did I have the inclination to even want to try.

The people at the bar were friendly enough. It’s just the dementia.

I think our friends felt awkward with my behaviour and I’m sorry about that. It’s not something I can do much about anymore, and some episodes are worse than others.

Oh god, it’s him…

Shopping

I woke up this morning and J and I decided to do some shopping. The feeling from last night was still there, as I entered shops with music playing and people milling about; lots of voices. I was finding the whole thing just slightly overwhelming. 

I put on my Sunflower lanyard.

(I’m never sure if people know what it means.)

Anyway, I tried on some approach shoes and while they fitted my weird feet, I didn’t like the styles. I don’t know about you (and why would I?) but some seasons I buy nothing as I find the styles and colours pretty ghastly. 

I had neglected to pack enough hiking t-shirts due to dimness/dementia, so I did buy 2 hiking t-shirts (cotton T’s can get uncomfortable on a long hike) with Jacqui’s help. I then said that we should abort the shopping sortie as it was just a fruitless exercise.

I’m now writing this. This evening we are going out once more to a restaurant. It will be fine. This sort of thing just happens now and again.

I’m just looking forward for it to pass over so I can return to the new normal. 

It can take days however.

My Neurological Diversity, innit?

Someone I was at school with sent me a friend invite after viewing my profile on Facebook. We didn’t really know each other very well, but she had read my blog and a lot of it had resonated with her. Amongst other things she had been diagnosed with autism. She said if she had not known she would have thought I was writing about autism - especially the need to wear dark glasses and noise-cancelling headphones bit.

We compared notes and have had similar experiences socially all our lives; not really fitting in to any one group, saying the wrong thing/ faux pas, and more. 

Yes, I know everyone does. 

But they really don’t.

It was very interesting anyway, and good to have a new friend to understand/empathise with.

ABBA VOYAGE Concert Review

Journey

You arrive from a little unknown station in the East End called Pudding Mill Lane. Straight out of the station and there is the Abba Arena. It seats 3000. And yet it is not an eyesore in the area at all. Maybe it was always there? Seems to have been.

We entered the foyer. Calm, all-wood vaulted structure, bars everywhere with food stalls and shops. It's crowded yet calm, just like a Nordic airport.

I can't remember if at this point I put my sunflower lanyard on.

I certainly had a beer though, and J and I bought a couple of t-shirts.

All the people working there were really happy and polite. Nothing like the feeling you get of being treated like livestock at lots of other venues.

And there's barely any queueing. 

We had a hot dog and did a bit of people-watching, as you do. Some people had dressed up. J was wearing something or other and looked spectacular. The feeling was really friendly. Everyone on earth seemed to be represented here, young and old. And we were all here for one thing.

So we go into the auditorium and there is a large cinema like screen showing an animated forest scene with the occasional will o' wisp  in the background. Snow gently falls. Ambient music plays.

We chat to the people next to us. I'm looking at my watch.

WOW!

And the concert starts  - everything is pitch black, and the 4 members of Abba rise through the floor. It must be said that the light on the figures is key to the look. It really makes them look as thought they are actual corporeal figures right there in the show. Holograms are translucent and rather washed out. These are NOT HOLOGRAMS, but 2D projections onto glass, created by George Lucas's effects company Industrial Light and Magic (ILM).

The attention to detail is astonishing, and the movement with the lighting is incredible. 

They are there, real, right in front of us.

Frida is wearing a red feathery cape, and Agnetha a blue one. There are big projections to the side of the stage which show them close-up. It must be said Agnetha is the least convincing. Slightly rubbery and not as pretty as she was. Benny is the most convincing as I guess his face isn't as expressive and he has a beard. It kind of distracts from the figures on stage at times, which is where the realness is.

Oddly enough, I didn't cry. The lady to my right did, and Jacqui cried 4 times I think. I guess I'd been through it so many times in my head and built it up so much that I was somehow over it. 

Other things - there's a large animation section in an Anime style which covers 2 songs and didn't seem to fit in to the rest of it. We were all there to see the ABBAtars - not a pop video without the ABBA members in.

However, when all is said and done, none of this detracts from it being a 5 star experience. I'd built it up so much I was expecting perfection, and nothing is of course. This is totally state of the art, with 5 (?) costume changes and a BRILLIANT band who play live to give it that punch of energy you need at a concert. The light show is incredible and the figures dance and move as ABBA because THEY ARE ABBA!

Highlight for me was 'Lay all your Love on Me' which they performed in their Tron outfits. No figures on stage at this point, and shot as if a drone was moving around above them And then from close up it zooms out on Frida and Agnetha and a Tron-like maze of vector graphics starts to appear on the ground beneath them.

Then the whole gigantic display appears to flip 90' back to the horizontal and all 4 members are on stage performing, on another planet. It was jaw-dropping.

Wow.

Conclusion

It is an incredible experience. I shall be going back AT LEAST TWICE. I need to take more people to see it and experience it with me and wallow together in the wonder of it all.

As they did with their pop music back in the 70s, ABBA have set the bar to an entirely new level. Go and see it. It's ...well, maybe a new word will have to be created to describe it.

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. 😜

Let someone else have the sun!

Chapel Life

I chatted to my naughty cousin, Steffan, while we were having the family gathering in April. It was the most we'd spoken ever. We compared notes.

The title above is how he described his upbringing. Did that resonate with me.

Our parents were forced to go to chapel as kids - as soon as they were adults they stopped going. But that doesn't really change much, except you now have Sundays free, for it was most of the day they attended.

Ah, the benefits of non-conformist repression. Knowing you’re born a sinner, last in the queue, to make way for your betters, never ever be late for anyone, to know your place in the world and just aim for the middle as it’s the best you’re ever going to achieve. 

And they've got you for life.

Yes - it’s the nuclear fall-out of centuries of chapel life, ingrained in families wherever those sinister little buildings arose.

For example, I bought my parents some good quality knives for Xmas as the ones they bought in the garage with coupons all those years ago are rubbish. 

Oni yw fy sbwriel o safon?

'Why are you buying us nice things?'  In other words, 'We’re Welsh - we shouldn’t have good stuff.' 

'I know this knife is as sharp as a spoon but it’s good enough for us.'

'My 2 pairs of nylon underpants will see me out.'

Etc.

My parents' generation were told if you were bright the most you could aspire to be was a school teacher, which is why so many Welsh teachers worked in London schools. 

I met an old Welsh guy who pointed this out to me on a business networking social I did years ago. 

“Don’t tell me what your parents do - they’re teachers.” 

How did he know? It’s all you were told you could do if you were bright and Welsh. 

'I told my careers master I wanted to be a Management Consultant. They laughed at me ‘You can't do that; you’re Welsh!’'

You may laugh at that. But that is institutionalised repression in a nutshell;  and it took out lots of capable people for centuries, and all the while everyone else doffed their caps to their betters. 

And it filtered down to me and my cousin. And no doubt others.

I guess rugby offered a middle finger to the mine-owner - the only opportunity to vent the frustration. It's one of those situations where you can get one over on your dominant neighbour. It makes you feel good for a bit when you win but ultimately it doesn't really change anything for the better.