Can you help me get through a GP appointment with my dad?

[eyeslikebutterflies]

Long - sorry. My dad (80) is having some sort of breakdown, or (I think) has dementia. His behaviour has escalated dramatically, but I've managed to book an appointment with his GP for Wednesday.

Dad doesn't know I am attending. The GP and my mum do. I am ambushing my dad because he has become aggressive, shouts all the time, paranoid. He makes no sense at all, is obsessed with his health, convinced he is dying, and won't let you interrupt him when he speaks (which can be a 2-3hr monologue).

For context in the last week my dad has:

Saturday - had prostate cancer and went to A&E because he was 'dying'. They sent him home.

Tuesday - had a 'terrible fall'. He tripped slightly.

Wednesday - had concussion from the 'fall', and demanded a visit to A&E. Mum got him a GP appointment instead.

Wednesday afternoon - had a 'brain haemorrhage', smashed up a bowl when my mum said 'you don't need to call 999 we're off to the GP in an hour', and called an ambulance. Which came out, and said he was fine.

Friday - had 'blood clots'. Called 111, who sent him to A&E (give me strength), mum had to take him, 5 hours later they sent him packing.

He demands A&E every other day. Gets angry when you say no. Says you are killing him. Has Chronic Fatigue and health anxiety. Has other markers of dementia. Says the entire NHS and his family are all out to get him. Is making mum's life hell, is horrible to me and my brother, screams at all of us. This is not how he was, it's just been getting worse over the past few years.

I am scared about going into the GP on Weds. He will kick off. But I need to get a diagnosis. I don't have the health POA as dad wouldn't let us get it.

Can I ask if anyone has had similar experiences and how best to handle this?

Oh I'm sorry.

Sounds like he needs to go into residential care.

Oh how stressful for you and the family.
I'm afraid I don't have much in the way of words of wisdom for you, but just wanted to offer a bit of support.
However it goes, it's a step in the right direction as it will be step one to getting a plan in place.
They might offer some medication that will help with the aggressive outbursts and at least refer him on to the relevant clinic. They might suggest a different cause for his change in behaviour. Perhaps they'll do a scan.
Ultimately, I think a good tactic is to let him think that going is his idea- he wanted to go to the doctor to discuss his ailments- you're just the driver and you just want to see/say hello to the doctor, you're not interfering, you want to talk to her about something. Unfortunately, if he asks you to step out of the appointment, you will have to but hopefully it doesn't come to that.
Good luck an let us know how it goes.

Sending you lots of love. Had similar with FIL. He was convinced everyone was ganging up on him. After his dementia diagnosis he started to process things and was willing to accept things as part of his illness. That’s before he got to the stage where he needed a nursing home. It’s going to be difficult at the GPs but you are doing the right thing.

Is your Mum taking him to the surgery? If so l would meet him there and just walk in with them. Leave it to the GP to speak to him, he will draw his own conclusions l'm sure and imagine he will refer him to the Memory clinic.

It might not be pleasant, but perhaps if he does kick off hugely, that will allow the GP to see exactly what he's like?

I would send a bullet pointed list as per your OP to the surgery the day before with a request that it be passed to the GP in advance of your appointment.

Maybe ask Dad to take a urine sample with him too.

Ultimately if you Dad asks you leave then there is nothing you or the GP can do to make him allow you to stay for the appointment. I would ring the GP and ask them for an email address to you can email your list of concerns in advance. The GP can’t discuss anything without your Dad’s permission but it's not uncommon for them to receive emails/letter of concern.

It sounds like he may have dementia. Paranoia is fairly common as are misguided physical health worries. My mother was constantly going to the GP demanding referrals for various imagined ailments - cancer, heart problems - because she knew 'something' was very wrong but completely misidentified the cause.

Your best option would be to write a short note of your concerns and ask reception to ensure the GP reads it before you go in. You do need to go into the appointment as your father will not report back accurately anything the GP says so you will be no further forward unless you witness it.

The GP will probably give him a mini memory test (your father may not cooperate) and then refer him to the memory clinic. Then you have the issue of getting him to the memory clinic appointment. Wishing you the best of luck OP, it is a protracted and miserable process. I'm ten years into it and my mother has been in a care home for several years.

Definitely do this.
My sibling and I took my mum to the GP when she deteriorated badly. She put on an amazing performance, assuring the GP she was looking after herself, taking her meds etc. The GP was completely taken in.
Hopefully in your case there are records of all these A&E trips and ambulance callouts, which will provide proof.

I totally agree with PP that you should send email to GP beforehand. But another thought is to get a GP appointment just you and your mum to discuss the situation with the GP quietly. Our GP would do this when a family member was acting very out of character.

it sounds very likely that once GP sees your dad and reads the hospital notes they will have a good understanding of the situation, and will welcome the family’s input as it sounds as if your dad will need some sort of intervention.

This sounds like a very stressful and upsetting situation OP. I hope you get help for your dad.

Hi OP,

Well done for going to see the GP.

There seem to two possible outcomes for this:

1. it's a UTI causing delirium and that gets fixed really quickly by antibiotics.

2. it's dementia and you will have a long wait for a memory clinic appointment and then you will still be left trying to care for him. If it's this then nothing is going to change that fast. The GP might tell you to start ringing 111 option 2 and asking for the mental health crisis team instead of going to A&E, but when my relative in the same situation did that, nobody answered the phone.

So what I'm coming to is that if you are not coping, then it might be a good idea to start ringing round care homes asap.

My advice is to do as much research as you can now, on what services are available in your area, for people with dementia. You might have the impression that once you get him to the GP and the GP says she thinks it's dementia (if she says that) then a process will swing into action to take care of him and your mother.
We found with my father in law that nothing could be further from the truth. Our experience was that there is very little help available to people with dementia or their families.
The GP said she thought my FIL had dementia and referred him to the memory clinic and we all thought "Ah good, thank goodness for that". After a long wait for the appointment, we took him to the memory clinic, they did an assessment, he answered all the basic questions incorrectly (What day of the week is it? Who is the Prime Minister? etc etc) and they concluded there was nothing wrong with him. Meanwhile, my FIL had started peeing in the lounge because he couldn't remember where the bathroom was.
Really do your homework now and prepare as much as you can, arm yourself with as much knowledge as you can about what can be done to help you and your family. Prepare to be strident and insistent when he is being assessed. The Alzheimer's Association has a website and some support services depending upon where you are in the country. Don't rely on getting a diagnosis and then having someone scoop you and your family up into a system that takes care of people with dementia, because as far as I can tell, I'm afraid there isn't one and you have to be insistent and tenacious to get any help.

Thank you everyone for taking the time to give me your advice, really appreciate it.

The GP has been forewarned: my mum finally admitted something is seriously wrong (she's been in denial) and after a lot of nagging called the GP and told them what was happening. I also spoke to the surgery on the same day and they said my dad is 'well known' to them. They have a record of all of his A&E and out of hours visits. It was them who suggested I come in on Weds, and they're also getting a letter for my dad to sign to give his consent for me to speak to them. Bless them, I'm so grateful.

But I think a list of concerns / notes to send to the GP is a really good idea, as Dad can also put on a good show when he wants to.

Noted about doing my research - tbh I don't know where to start but spoke to Age UK earlier and they've referred me to their advice team. Their local council weren't helpful. I am hoping the GP might be able to signpost things.

You could also try adult social services, my aunt was allocated a social worker.
She also attended memory clinic but the appointments were quite spaced out.

I agree he could have a UTI infection
People do not know that they have it
Need urine test
Can cause delirium, confusion, hallucinations, weird behaviour
Antibiotics & rehydrate

Hope GP appointment provides progress

Good luck

This sounds really tough OP, you are doing the right thing. I hope the GP appointment proves helpful.

if it doesn’t, next time your dad insists on going to A&E you could ask the hospital if they have a dementia specialist nurse on staff. My local hospital did/do, and she often goes down to assess patients who are showing behaviours like your dads but have no formal diagnosis. If you have a similar staff member at your hospital, they could be a really helpful resource. They would be able to see all the repeat attendances in close succession. Ultimately the hospital are going to want to reduce unnecessary A&E visits, so may be helpful in getting your dad to the right service. A dementia specialist might also be less likely to be taken in by “masking” behaviours that some others have described here. (Though of course plenty of GPs are very good as well!)

best of luck xx

That's a great idea @Quickdraw23 , thank you.

For those thinking he might have a UTI, he doesn't. One of his 'things' is that he has a bladder infection, so he's forever dropping off samples to the GP!! And has had lots of courses of ABs. Ironically, he had a bladder scan because of all this and the urologist, later characterised by my dad as "ignorant", told him he has slight inflammation and needs to drinks loads of water to resolve it. Dad, of course, refuses to drink the water.... he's so bloody infuriating.

I would send a bullet pointed list as per your OP to the surgery the day before with a request that it be passed to the GP in advance of your appointment.

Definitely take the bullet point list of your original post.

Thanks everyone, just sent an email list to the GP and called the surgery, who said they'd make sure the GP reads it ahead of the appointment.

I would keep a copy if the notes with you. Depending on hue efficient your doctors are, the letter may not have been scanned onto your fathers records, and/or the dr may it have had time to read the notes. Actually, may be worth asking receptionist adding a note to the appointment asking doctor to read letter first, so he’s aware there’s a letter to read.

I was told by a dementia consultant if you go to an appointment with your family member and you suspect they have dementia issues but they are in denial, when they are answering the questions of the doctor you have to shake your head. You don’t interrupt verbally but you shake your head and it indicates that you believe they are not aware of the truth

Thank you @Riverlee , will print them off. And that's a great tip @Swingingchandelier , particularly as Dad won't let anyone interrupt him when he's speaking but he's also not very observant so will be unlikely to see me shaking my head. I'll try and sit a little behind him if he allows me in.

God you lot are brilliant.

The best advice I found was from the Alzheimers Society which covers all types of dementia. They have information sheets, a telephone advice line and forums. Whatever your question, someone will know the answer.

https://www.alzheimers.org.uk/get-support

If you want to try Social Services, google Social Services Adult Services and your dad's location and give them a call. What they will offer will be extremely limited though.

Thanks you @catofglory - their list of what constitutes 'dementia' is really useful, as Dad ticks a lot of the boxes (he doesn't for other definitions I've read), so I will push that with the GP.

Dad is now saying he has blood clots and wants my mum to take him to A&E yet again (they last got home from A&E 24 hours ago!!!), and told mum she's not allowed to go to the GP with him tomorrow as he doesn't trust her (when she said no, she wouldn't take him to A&E).

Jesus wept this is getting ridiculous. How can he not know he's completely mad?

I'm glad the Alzheimers site was helpful OP.

A person with dementia has no insight into their behaviour. They are frightened most of the time because they cannot understand what is going on, they just know something is very wrong. And they cannot remember what they thought or said ten minutes ago so it gets repeated on a (very annoying) loop. They have no sense of time, so the visit to A&E may seem like ages ago, or be entirely erased from memory.

The usual advice is try to avoid contradicting the person with dementia, no matter how wrong their beliefs clearly are, otherwise you become the enemy and the person's fear ramps up because "I can't trust anyone". So in the case of "we must go to A&E" the reply would be "yes we will do that after we've had a cup of tea (or whatever)". And keep acknowledging but putting it off. Of course it's very difficult for your mum as I am sure your dad is like a dog with a bone.

I hope the GP can signpost some useful help asap.