Showing posts with label carer. Show all posts
Showing posts with label carer. Show all posts

Wednesday, February 19, 2025

On behalf of the dim

The Counter-Enlightenment

Apparently Ukraine started the war. I don't know how, as Russia invaded it. 

But they did. Donald Trump said.

They're not allowed to negotiate the peace either. That can only take place between Russia and America. 

And Russia must be compensated by having all of its terms met BEFORE the negotiations take place. So it gets its territory (which historically was its, back in the bleh... century) and Ukraine can't join NATO.

That'll serve Ukraine right and teach it not to be a VICTIM again!

We stand with the strong men of the world! 

Trump's face will be carved into Mount Rushmore!

People loyal to THE PRESIDENT will replace those whose were merely loyal to the constitution!

Every podcast is out of date the moment it's broadcast as more and more insane shit is introduced by the US govt.

This is a deliberate tactic.

Trump is asked questions about his various secretaries of state and their actions, and doesn't even know what they've done or are doing.

That's not his job!

That's Elon's!

Trump's job is to play golf and to sign shit with his Sharpie.

This is democracy in action! 

All Hail the President!!

Is he going to be vulgar again, Deirdre? 

You know? Like last time...

Well to all the Deirdres out there, I do have Frontotemporal Dementia (Behavioural Variant) and this isn't the 1950s, but I will be more sensible and boring as I know the general public prefers it. 

And my key demographic is the middle-aged and intelligent, anodyne as that may be.

After all, in keeping with other dementia sufferers, one's accompanying blog about one's life as a demented must be wholesome and pure.

I'm supposed to talk about flowers, and spring (everyone forgets in the UK that the weather is shite until April) and birdsong, animals, walks in nature and beautiful loveliness.

And also my ever-loving care-partner, who I don't have. This bit only just occurred to me, as an autonomous dementia-bot - that I don't have a significant other.

Most other dementia bloggers tend to still be in relationships. I'm well-aware dementia puts a huge strain on relationships and many people split apart as the behaviour of the dementia sufferer goes un-diagnosed for years and can create antipathy and resentment.

Obviously I can get away without having a carer at the moment. 

My plan, when shit sucks, is to jump off a cliff.

It may never reach that point as one's lived experience in the present is 'well, I'm still okay', even when you've lost all your friends and are - at that moment - being arrested for trying to have sex with a large display of canned soups in a local Asda.

I imagine that the urge to remain alive is a strong one even when you're full on mad/demented.

I thought once I can no longer read, or run or play a D&D game anymore - with that being my raison d'ĂȘtre these days - what would be the point?

And I'll probably then say - ah, but I still appreciate music, ...and so on and so forth until I run out of interests and hobbies and all the other things that make me ME, until I'm reduced to basic bodily functions and wearing a nappy.

And the cliff thing - I'm a coward, so I probably won't do that.

Mind you, the world may not last that long the way things are going...

Balancing the booze

I managed to disgust myself sufficiently into stopping drinking or rather, cutting down to 4 beers a week. My stomach was that of the famous pregnant man from that early 70s advertisment.

Famous pregnant man advert

Self-disgust is an excellent in-built emergency brake and u-turn. A kill-switch if ever there was.

I looked at my once Apollonian frame in its naked glory in the mirror. Sagging everything, a retreated winkle too ashamed to show his once true majesty, Blackadder legs and a bloated potbelly. 

I look like some ancient toad. 

Me, naked. The other day.

It's puketastically bad. Bad enough for me to eschew the booze and walk a bit more, watch my diet and increase the vegetables.

I blame my parents who made me eat a ton of veg when I was a kid but now eat hardly any themselves. 

Okay, okay - I shall take charge of the cooking.

It will take 2-3 months and more exercise to get to my ideal weight / belt notch. It always does when I get to this stage. But I am fatter than I've ever been.

You need to see me in the flesh to see how revolting I truly am.

I already feel better since cutting down alcohol and walking more.

Full-frontal nudity here we come!








Tuesday, March 7, 2023

Am I a fraud?

No news isn't necessarily good news...

I was going to write about Bruce Willis's recent diagnosis of FTD, but I won't because we had a meeting with the Neurology team as a follow-up to my lumbar puncture in late November and I know more about us than him.

The neurology team had sent a letter we hadn't received as a follow up from the lumbar puncture. They told us in its absence, that the tests had shown up no signifiers. This is more than likely, good news.

They did a quick neuropsychology test which as usual I performed with flying colours.

They said the MRI from 2 years ago and the most recent one showed no obvious increased atrophy in the frontal or temporal lobes, but did in the Hippocampus. They are going to use an AI program to 3d model one image over the other to get a more accurate picture of my brain.

They said they didn't know for sure what my dementia was - Behavioural or Semantic variant or other, and that in time it will show itself, but for now my dementia symptoms (searched long and hard for that word!) are atypical with any one dementia and are mild.

I'm due an MRI scan in July again.

As for the replaying of events over and over in my head and me shouting out for them to fuck off, that could well be a psychiatric problem.

When we got home I checked my email and paperwork. 

Despite my illness I'm still very organised compared with most people.

I put all my medical correspondence in the green box file. The letter isn't there, nor do I ever recall seeing it. They said they'd emailed it too. Nope. Been waiting months for it too. I would have known if it had arrived.

Who cares for the carers?

J has taken yesterday really badly with another sleepless night. 

No definites - no tangibles - from the best neurology department in the country.

She no longer has a husband. Just this child. What is the future? How can she plan? This isn't what she signed up for. And am I making it up? 

She's not so sure it seems. 

Geraint earlier today

That old adage of walking a mile in someone else's shoes. Very difficult to do of course. The nearest thing I can do to communicate where I am is write this blog.

What with work, family and the house, and the lack of sleep that induces, J doesn't have time to write a blog.

This aspect of the disease and how it affects others is horrible.

I don't want to put words in J's mouth, but it's clear to see how awful this is for her.

So do I have dementia?

Well, I'm finding reading more difficult. It's more of a mechanical process and I don't always ingest the message of the writing. I will sometimes start at the last paragraph then impatiently dart to a previous paragraph, then to others, not completing the article, and then move to a different article entirely which will hopefully garner my undivided attention.

I can't cope with work. Haven't really been able to for years. Fyfe was doing everything by the end.

I leave lights and the oven hob on. I discover unfinished tasks, and search for things I never used to lose.

I need to make notes about a D&D session so I know it really well. I open my notepad and the notes are already there. A vague recollection of doing it; the names and contents are familiar, but I don't know it well enough to run it, but I end up doing it anyway because I can't knuckle down to study for the reasons above. 

More mistakes but the players don't know and are  - hopefully - still enjoying it.

I'm just being rude when I think I'm being funny. I can't do light and noise like I used to. I just want to get out of party-situations, which I used to love.

I don't want to go out or do anything, apart from games and TV. I obsess about something for a while then another thing after that. 

I'm more absent-minded and my short-term memory is going. I lose words, take ages to find them straining my brain, then forget them again in seconds.

I flap at anything unfamiliar. I can't deal with stress at all. I feel the physical effects - brain-stalls, headache and blood-pressure sky-rocketing almost instantly. I can't take this in. Got to get out. So I walk away.

Is it part-Alzheimers, part FTD, part Semantic Variant? I think a bit of all of them. 

But even putting one name to it - does that even really help? As we know dementia can have a name but it brings out very different behaviours in the sufferer. 

Floating in the void.