Help needed: dementia, chronic fatigue or just controlling?

[eyeslikebutterflies]

My dad (80) has chronic fatigue (CFS). He has diagnosed health anxiety and recently had a much-delayed prostate operation (which had made him very unwell; but also worsened his health anxiety as he had "heart attack" that further delayed his op but turned out to be stress/health anxiety). Since covid his behaviour has declined, but my family just kept saying "he'll get better when he has his operation". He's got worse.

E.g. He now has "attacks" of CFS - huge meltdowns where he shouts, cries, accuses people. They are triggered by anything: today it was because my mum didn't tell him she'd had an upset tummy for a few days.

During these attacks, he "broadcasts" for hours. He can literally speak for 2hrs non-stop about how awful his life is, the NHS conspiracies to make him ill, how no one believes he's ill. He's constantly at the GP, and "broadcasts" to them too. His entire medical history, over and over again.

If you interrupt he says you NEVER LISTEN, that you're stressing him out and stress makes his CFS worse (he actually told me I was killing him last time we 'spoke' because I interrupted him). So Mum has to sit and listen until the broadcast ends, or can make an excuse like she needs a wee, otherwise he makes her life a misery for days.

He circles back around his illnesses all the time. Like he's stuck. But he also talks about his earlier life, and has started telling stories about MY childhood like I wasn't there: "There was this time, a few years ago, when I was in the south of France..." (referring to a family holiday 30 years ago).

He's always been self-absorbed but it's at another level. My mum had a hip replacement and while I was in hospital he rang saying "I've done my research" and when I asked what he was on about, he angrily told me he'd found out why he was so ill and was going to speak to his GP to get it fixed. Which was batshit (he has CFS, it ain't fixable), but also - he seemed hurt and confused when I said I needed to go as mum was about to go down for her operation.

My mum's life is a misery, but she won't let me do anything. She says there's nothing we can do as it's the CFS. But it's slowly killing her. HE is slowly killing her, and I'm at my wit's end. So, I'm asking: is this how CFS plays out in older people? Or is it dementia? Or is he just a monumentally self-centred, controlling bastard who's just got worse with old age? What the hell do I do??

Long post / rant - well done if you got to the end.

This sounds like a complete nightmare. I'm assuming any suggestion he sees someone about his mental health would just cause WW3 to erupt.

Has anything changed in the past few years? Has he got worse? or better (mentally not physically)?

So frustrating when your mum is suffering but won't let you do anything.

I can't see anything obvious you can do but didn't want to read and run.

Errr… I’ve had CFS for a long time, am in groups with many CFS people and I treated people with CFS when I was still working in the nhs…this isn’t a symptom of CFS!!! He sounds more mentally unwell.

This sounds like a mental illness so your dm should consult his GP for help. It sounds horrendous.

It sounds like it could be the start of dementia, or else something to do with his mental health. I would have chat with his GP and ask if he could have a mental health assessment. He sounds very unsettled and angry too and it's very sad that your Mum has to live with this.

It actually sounds a bit like a manic phase so l wonder if some medication he is on eg antidepressant is sending him into a manic phase.

Thanks everyone, I really appreciate your replies. I'm finding it so hard to persuade mum or wider family that this isn't CFS, that I then start second-guessing myself.

He's not on any meds for mental health, is on tramadol for pain (CFS related), and I know that can cause confusion, and that CFS can cause head fog - but this seems more than either of those. It's the anger, the broadcasts, the going over and over and over the same thing again and again - I can't bear it.

Getting it out there has been helpful, so thanks to you all for reading my marathon post!! God knows what to do next but will think of something.

OP reading through the symptoms for CFS there was no mention of raging, ranting or meltdowns. This really sounds like something else so l definitely think it merits an appointment with his GP, even if you could get some advice on how to manage, and possibly get medication for, his stress and anxiety.

He can’t be that fatigued if he can rant at someone for 2 hours regularly. That sounds exhausting!

I've known a couple people with CFS. When the CFS flares up, one of them basically becomes bedridden. She can maybe walk 50 steps at a time, then she has to rest. She might be able to talk on the phone for 10 minutes, then she has to lie down quietly.
The other wasn't quite as severe but he basically worked from his bed when the CFS was bad. He would call in to team meetings from bed, and even then occasionally had to leave partway through because he was overcome with fatigue.
Neither of them could have POSSIBLY manages to rant at someone for 2 hours! It's definitely not the CFS that's causing that!

His behaviour is not related to CFS. If you want to try to convince wider family of that you could show them the NHS page describing the symptoms.

https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/

Given the description of his behaviour, and his age, it is entirely possible that he has dementia. Dementia can worsen existing character traits, and manifest as paranoia, selfishness and inability to apply logic and reason. If he has dementia, he keeps repeating his stories endlessly is because he doesn't remember he's done it, as you say he's stuck in a loop.

I would be surprised if the GP had not recognised there is an issue with your father's cognitive functioning but if you father is stuck in broadcast mode he won't receive any unwelcome news - and anyway, it'll be another NHS conspiracy.

I'm not sure what you can do given your father is so hostile to intervention, but be assured that his behaviour is not due to CFS.

That sounds most like a mental health issue of some kind.

I would talk to your Mum. Would she and you write a letter to his GP describing these rants and asking them to bear these in mind when he next visits? You don't have to suggest any particular diagnosis.

When he talks this way to you - it's up to you how you deal with it. My husband had psychotic episodes and I found it important to maintain my own sense of reality. So imo it would be perfectly fine to say 'you're shouting Dad, please lower your voice' or to say 'you've been talking without a break for an hour Dad, I'm worried about you, this isn't like you.' Stand up to him essentially.

He was once young and abusive, now he is old and abusive. You’ve stated he’s always been self absorbed too. He likely had not changed in all the years since. It’s nothing to do with CFS nor is he suffering from dementia. He’s also verbally abusing you as well as your mum,

Your mother has chosen to stay with him for her own reasons thus throwing you under the bus in the process. You can only help your own self ultimately and you can only change how you react to them.

It’s not CFS. You know that by now.

Frontal lobe brain damage triggers the excessive talking - my DF has it. Ditto the uninhibited emotions. See a neurologist. Talk to the GP asap about a referral
and stress that it’s not standard dementia.

Most important: It’s very hard to cope with, and usually incurable. Sorry. It can be a bitch to get diagnosed cos GPs lump all brain problems over the age of 50 into Alzheimer’s.

Really most important: Try and stay away from your father as much as possible - they are at best damaging to be around. although any break you take won’t be enough to stop you being hurt (you can’t fix them but they can and do break you.)

Does DF drink? Makes it worse. Can be a stroke or rarely other dementia too, I think. Either way, get an MRI done asap. You’ll see the holes in it.

If it does turn out to be dementia related, then reading the book Contented Dementia will help you enormously.

Never argue, never disagree, just play along is the golden rule. Enter their world and play along because you will never get them to see your point of view.

Write to your Dad's GP expressing your concerns and asking them to keep your letter confidential. Ask them to invite your Dad in for a "health check up/MOT".

Don’t argue or stand up to them! Makes them worse. Just leave the room.

https://www.caregiver.org/resource/coping-behavior-problems-after-brain-injury/

They have the ability to do a lot of things - (many of them new and awful as you’re finding out). They don’t have the ability to do many good things - empathy and reasoning are out for a start. So don’t compare DF now with the man he once was.

If this man is reciting his whole medical history over 2 hours then I'd say some form of psychosis is much more likely than dementia. But I'm not a doctor and I guess frontotemporal dementia could look like this.

What do you think is psychotic about reciting medical history? Not a delusion in there.

OP, my grandfather went through a phase like this, and eventually they found his blood sugars were out of control (like incredibly high at times). they put him on insulin and just like that his anger bursts stopped. It may have nothing to do with what your dad is going through, but it would be very easy to check and it;'s worth having a look.

My heart goes out to you, how stressful.

None of this is CFS. During flare ups I ache from head to toe like I just got hit by a bus and randomly fall asleep mid sentence as I'm so exhausted. Nothing could wake me up, my body just shuts down. No way I'd have the energy for a two hour rant.

The brain fog just makes it so I can barely string words together and I can't remember anything properly including what I did that day and if I've eaten or taken my meds.

This isn't CFS.

You mention he is on tramadol for pain - pain is not a CFS symptom although lots of people with CFS also have pain.

Tramadol can cause hallucinations and other problems in some people.

I hate Tramadol and it shouldn't be long term especially in the elderly. Can he have a GP rv ?

Thanks everyone, lots to digest - and I can't stress how helpful your posts are. To clear a few things up:

He wasn't abusive when younger. He has always been selfish and self-absorbed. That behaviour is magnified BUT the abuse is new. He's always been infuriating and was emotionally absent as a father but isn't a bad person as such - a shit dad but not an abusive one.

Standing up to him makes him worse. My brother is currently 'dead to him' because he calmly pointed out that dad had spoken at him for 2hrs without drawing breath.

The circular conversations / repeating is not just medical history. It's his life story. Sometimes, both (he can jump from an incident in childhood to the last time he was in A&E and then back again - and when I ask what the connection is he looks at me blankly.

The reciting is however quite often delusional as he misremembers things eg he'll say his last trip to A&E was for X, when it wasn't at all. He makes things fit his narrative of an NHS conspiracy / no one believes me / no one cares.

Very interesting that fellow CFS sufferers don't recognise his symptoms. He DOES get exhausted by the rants, but then he also starts clutching his chest and telling you it's all your fault and you're killing him by stressing him out, so it'a hard to be sympathetic.

I thought the pain WAS CFS. He is convinced it is, and that's why the GP has prescribed the tramadol. That's new to me - thank you.

My DS is type 1 diabetic so I can easily test his blood glucose. High BG turns my lovely son into a massive pain in the arse so it's a possibility!

I had a chat to my wonderful DH last night and have decided: to take an emotional step back (not get entangled in his narrative); gently steer my mum towards the idea that this isn't CFS (so that she's more amenable to action); chase up the LPOA (I have the £ one but he delayed the medical one, but it's in train); go to his GP once I have it; work up a plan with my brother.

The only good thing in all of this is that his health anxiety means he LOVES any sort of tests and diagnoses - so I'll use that to get him in front of his (very long suffering) GP.

Thank you all again for your kind and wise words - needed to hear them last night.