Hallucinating that people are not there

[frogpigdonkey]

Hello all
looking for any common experience and advice here. My father has seemed to deteriorate in his mental function very steeply and recently. I’ve seen a slow loss of executive function in the last year but in the last 2-3 months he has had some really weird episodes. He has had a couple of what I would see as breaks from reality, where he is ranting and raving about things that aren’t real and scenarios that can’t be. He was extremely abusive to me on text and then on the phone about me having been at his home and taken his (non existent) girlfriend away and leaving her somewhere. He didn’t seem to really know who I was. Most of the time he is more rational sounding but will come out with non sequiturs and seem confused about basic things. More lately he has been very insistent that lots of people have been in his flat who haven’t been (his sister, an ex girlfriend and an ex wife). He almost always talks about going away with them but the calls me from the flat and says he doesn’t really know what happened but they aren’t there now.

I’ve tried to help him- I’ve tried to clean his (filthy) flat but he won’t let me. We’ve been to his doctors together and got a referral for a memory clinic (which needs a blood test first which will take 6 weeks,) and suggestions about social care but nothing really concrete or immediate. I’ve considered calling adult social services (he lives 70 miles away) but I’m conflicted- I’m his only real social contact and I worry that it will be a big breach of trust. But he’s deaf, limited mobility and struggling, and sometimes wants help and sometimes insists he is fine. His pace of deterioration and the jumps from a bit rational to absolutely raving and hallucinating worry me most. The advice for dementia seems to be not to contradict their delusions but I don’t know how to convince him he’s hallucinating and needs more help without doing this. Anyone had similar experiences and any advice? I’ve lived through a slow decline in vascular dementia with my mum but this feels very different.

Im no expert but just from personal experience with elderly relatives, if the deterioration was sudden and involves hallucinations, it could be something such as a severe water infection on top of dementia etc

My dad heard a child voice saying “help me grandad I’m locked in the cupboard” and he heard other voices and swore that people were out to get him. He had a load of tests done and they found no explaination he was 76. Then a year later he was diagnosed with lung cancer. Not saying the voices and the cancer were linked but I do often wonder

Thanks both. I did think about a water infection but doctor seemed quite dismissive of that but dad was dismissive about how off the wall his behaviour was. He’s constantly at the doctors asking about one ailment or another and I wonder if that’s making them a bit blasé about whether he is really ill. He has lots of chronic conditions but no acute ones. He has a history of mental illness but is not currently on anything for this.

I would definitely get him checked for water infection, delusions and hallucinations are extremely common with those.

Another vote for checking for a UTI just to rule that out

Def check for an acute infection, but wondered about lewy body dementia. It can cause misperceptions which the person tries to find a reason for eg hearing noises and thinking they're people, or mistaking a statue for a person etc.

Sending sympathy as it's really hard.

Again thank you all 😍 I’ll try and persuade him and the docs to test for a UTI. Thanks for the suggestion of lewy body dementia as well. It is really hard- he doesn’t acknowledge that he’s hallucinating and is very defensive about the suggestion. Feels like he knows something is wrong but doesn’t know what or how to deal with it so he’s burying his head.

My late DM had Alzheimer's - she didn't hallucinate in real time, but she did tell outrageous stories that couldn't possibly be true. We had a neighbour with dementia who insisted there were people in her house, she'd hammer on the door and if you opened it she'd come rushing in, terrified that they were out to get her. It was ever so sad.

Not denying the delusions is right - if this is some form of dementia, the best approach is to listen, acknowledge then find a way to reassure and soothe him that the threat has gone. If he gets nasty or personal, move on to a different subject - it's no use fighting it as he can't be rational. He'll switch lanes pretty quickly. Does he recall the incidents that he raves about a few hours or days later?

But first...yes, if these are occasional episodes rather than a long term decline, a recurring UTI is absolutely possible. It was hard to tell with mum as she was delightfully potty all of the time, but if she was being extra bonkers it was always a UTI. I made her produce a sample when she asked me where I'd moored my boat...

I'm so sorry, it's a very hard thing to deal with especially when you aren't geographically close. He really needs that memory assessment. You could try getting in touch with charities like Age Concern or The Alzheimer's Society, they can often be incredibly helpful and practical, and signpost you to other services?

Good luck, it's a hard road.

Honestly check for a UTI.

I'd been asking for antibiotics for months for my father who has dementia but was acting strangely. It's so easy for them to dismiss it as dementia, especially if his temperature is normal.

My Dad's now in hospital recovering from sepsis, from a UTI. He went into hospital with 64/45 BP and still his temperature was normal!

Honestly, please just get him tested to rule it out.

UTI is always the first thing to check with sudden onset delirium. If that's ruled out there are a lot of possible neurological causes, but some.form of dementia high on the list of probables.

What mental illness does he have a history of? One that could be related (e.g. bipolar or schizophrenia), or something totally different like depression?

My Mother and Father both in their 90s suffered from hallucinations and delusions. My Father went into a nursing home and is still confused but safe and not unhappy. My Mother did not, she fought against the world for 6 months and then she died.

The cause of them were different - my Dad had a UTI & then a long stay in hospital. He is still delightfully dotty, usually on a railway trip somewhere or in a restaurant in his mind.

With my Mum, who was also deaf, I think it was schizophrenia which I later learned she had had when she was younger. (I never knew, no signs). There was nothing delightful about her delusions (she accused me of falsifying papers, my best friend of leaving a bra on her bed when she was sleeping with my husband. All sorts).

The only way I got through it was to say someone has to be the grown up. If you don't have power of attorney get him to sign while he still officially has capacity otherwise the legal complications are very great.

Then call social services and say you think he has lost capacity and it is no longer safe for him to stay in his own home. He may have to pay for his own nursing home if he has means.

Hallucinations are a key symptom in Lewy Body Dementia, often involving seeing animals and people in the house. Also common are delusions, such as thinking your partner is an impostor. And it's common to be very up and down - sometimes pretty rational, other times very confused or just totally zoned out. My FIL had LBD and had all of these symptoms. Does your father have sleep disturbance? That can be a very early symptom, years before the dementia starts.

Check more acute things too of course, but all the things you describe could easily be symptoms of LBD. If it is, then you have my sympathy - it's a horrible disease, though the drugs did help FIL with the hallucinations and delusions.

I should add, that LBD more often affects executive function than memory, at least earlier on. It can present very differently from eg Alzheimers.

Thank you all again- it’s been so helpful. @MelliC your mum sounds very similar to my dad - he’s suffered from depression and was diagnosed with schizophrenic tendencies when younger. His hallucinations are causing him great distress and he’s been aggressive and unpleasant around them as well.

i called the council today and they were very helpful, don’t need a formal diagnosis to do a care assessment so working on getting that done soon. Going to see him tomorrow and hoping I catch him on a receptive day. Thanks again

LBD sounds very likely based on the symptoms

My dad had a similar experience but he did also drink a fair amount. He was taken to hospital as he had collapsed. He was quite abusive to me, thought people were taking him away at night and thought my dead mum had run off to another country. Drs were a bit dismissive at first and it took me awhile to get them to understand that he wasn’t normally like this.

He was actually quite poorly and had to have an operation but he did get over the confusion.

Could it be: Dementia with Lewy bodies - Wikipedia?

Hallucinations can be a sign of UTI, reaction to medications such painkillers and also a sign of vascular dementia/dementia with Lewy bodies

For my late DM it was the signal that she needed to go into a care home when she started calling the police telling them she had been left all alone in an abandoned building ... when she was actually in a fully occupied block of flats and got 5 visits per day (3 from carers and 2 from family)

Really he needs a GP and social care assessment

I was a bit slow replying. the repetition of someone else's suggestion was not intentional.
Hope you are OK, @frogpigdonkey . You seem a good and caring daughter.

Thanks all. I’m trying! But having been through this with one parent I’m trying to be a bit smarter with this one and spend efforts advocating for care and support rather than just trying to do it all myself.

@frogpigdonkey Sorry to hear this. I have done a lot of reading about schizophrenia since the revelation and it seems that a lot of the symptoms can be controlled by medication. My Mother came off medication about 15 years ago.

I did get as far as contacting her doctor for her. But I couldn't persuade her to go in with me and she had a way of creating a distracting drama so I couldn't get round to doing what was necessary. Then my Dad went into hospital and there was his drama to deal with too.

But I think it would definitely be worth talking to your Dad's doctor. It will be a bit of a one way street if he hasn't signed consent but at least the issues will be documented on his medical records if it is a recurrence of the schizophrenia and taken into account.

BTW - if you are looking at homes, you will probably need one with nursing care (ie that has a qualified nurse that can dispense pills) rather than a more general care home. I spent a long time wasting time around that one as the homes weren't always upfront, trying avoid offence etc

Very common with UTI's and LBD. If he is seeing people, just tell him you know and you are taking them to the door and telling them to leave. This is what we were taught in Dementia training. Never argue the toss with hallucinations. Acknowledge and "remove the people/items" from the house. De-escalation through staying calm is key.

I agree but the problem here I think is that he’s disturbed by the hallucinated people not being there anymore! Which is a lot trickier!… Again you could just go along with it and say “oh they told me they were popping out to the shops” or whatever if he’s likely to forget about it later but if he’s convinced he’s expecting them back any moment for days on end and worrying about where they are that’s so much harder.

He’s given permission for me to see his medical records and to go with him to appointments but I will definitely call them as well. Just waiting to hear back from the council. Thanks for all the other tips as well.

the problem with the hallucinations is that they are happening when he’s alone so it’s hard to de escalate. The most recent one is his ex wife who categorically never wants to see or speak to him again. He never really got over the break up. He was convinced she was there and that they have been speaking for a few weeks about getting back together and then in his mind she’s just vanished, so he’s very upset about that. He’s trying to contact her in real life- she has blocked him and is very clear about not wanting to see him but he’s getting increasingly convinced that if he could just see her they could sort it out! If I let him carry on I’m worried he will get to the point of harassing her. I tried gently to say it might have been a dream but he’s adamant it wasn’t so no point anyway.