Elderly relative having hallucinations

[Fuckadoodledoooo]

They have been having them for quite a while. They keep phoning to ask if I dropped my children there as they keep seeing them in the house.

They say when they try to speak to them, they disappear.

They have spoken to their GP several times who keeps telling them it's stress and to go for more walks to relax.

It's not stress. I work with dementia patients. It could be anything from an infection to the start of mental decline (they are 85 and live alone).

But because the GP has said it's stress several times, they are now leaving it.

I live a long way from them so there is little I can do.

I'm so upset over it.

(Before anyone say it, I am loathe to call their GP myself as I had to take action against that particular GP 20 years ago myself as they wouldn't refer me for something that turned out to be cancer - saying it was mental illness instead. I had to get a private diagnosis. This GP still tells my relative that I am wrong and that they shouldn't listen to me - their cancer was dismissed as well by this practice, they saw 3 GPs there who dismissed them, I paid for a private consultation and they were diagnosed. But still, my relative thinks these GPs at the practice are all knowing).

This shouldn't be ignored.

I don't know much about these things but would social services check your relative for you or a health visitor?

My dad had this. The gp told him it was a problem with his retina. It bloody wasn’t. It was Lewy body dementia. I had to push for a diagnosis, seems if it’s not Alzheimer’s then getting dementia diagnosis and services is very difficult. Sorry for what you are both going through, it’s a terrible situation I’ll never forget 💐

It makes it harder that one worked in dementia and elderly care for a long time.

This isn't something that should be ignored.

In my experience, it is very often a urinary tract infection causing hallucinations.
Maybe you could say to your relative that you're worried they may have a UTI and suggest they ask the doctor to do a urine test?

@ZaZathecat

In my experience, it is very often a urinary tract infection causing hallucinations. Maybe you could say to your relative that you're worried they may have a UTI and suggest they ask the doctor to do a urine test?

One of the first things I told him do do. Says the nurse asked for a sample and it was all ok.

To be honest, over the past few weeks he's been impossible to speak to. Forgetting words, getting things mixed up.

There has been a real change.

My mother had this and was diagnosed with Charles Bonnet syndrome & she has macular degeneration. She sees children regularly & a woman wringing her hands. She doesn't recognise any of them
Apparently one of the characters in Corrie is going to be diagnosed with it.
Her tests for infection & CT scan were all normal & she was diagnosed by her optician

I think that if infection is ruled out, then dementia is the next likely candidate. Lewy bodies is a likely dementia, though hallucinations can occur in most types, as I’m sure you know.

The doctor should be referring to the memory clinic, if they are still open and adult social services for support.

I’m so sorry your relative is going through this.

I agree that Lewy Body dementia is a possibility. Can’t you ask for another GP at the practice to see them?

@PoppityPop

I agree that Lewy Body dementia is a possibility. Can’t you ask for another GP at the practice to see them?

They have seen all 4 doctors.

One was particularly scathing and told them that maybe I was the problem and was putting them under stress (they asked him why he kept going back and he said it was because I kept telling him to).

He won't change surgeries or let me pay for a private consultation.

I had him on my private healthcare until 18 months ago, but had to take him off to prioritise a larger premium to cover something for one of my children. I could kick myself now.

If was me Recorded delivery letter to GP copied also by RD to practice manager and head of elder care/ relevant social services head local council setting out that you have permission from your relative to convey this info ( get it) then details of what is being experienced, for how long etc, your fears re implications for her safety etc , and what you’d like to see in terms of a action. Eg medical examination by another GP in practice, social work assessment etc. If is RD letter they’ll worry about ignoring it as there is written evidence that they ignored your concerns.

If your relative isn’t cooperative then you’re stuck though

@EvelynBeatrice

If your relative isn’t cooperative then you’re stuck though

That's the trouble. They believe a doctors word on everything.

It was a struggle getting them to agree to see a private consultant - even when they were diagnosed with cancer they still asked them "are you sure? My GP said it was nothing, I'll need to check with them first before I believe you"

Does he go to any activities, clubs etc? If so, could you have a word with the group coordinator to ask them to tell your relative that they've noticed a change and suggest some support?

Try asking Age UK? They probably have a local branch who might have contacts with more responsive docs.

No, he doesn't do anything. Never has done. As soon as he retired, I had to be everything. I had to move away as 20 years of it broke me to be honest, I wanted a life for myself.

I was going to suggest Parkinsons, my Dsis has it and this is how it first manifested itself, not with the "shakes" which is not always the case.
My Sis started seeing all sorts, as she would "nap" for a few minutes then come to and then talk about all sorts that were in the room.
Being dehydrated can also cause hallucinations also caffeine and alcohol drunk within a short time of one another.
Parkinsons/lewy bodies is a possibility. Not easy for a GP to diagnose it would need a visit to a specialist.

Could it be a simple urine infection?

My mum had very bad hallucinations when she had a chest infection that turned to pneumonia. I called 111 as I thought she was having (another) stroke and an ambulance was sent out for her.

OP so sorry you're going through this. I've had the same kinds of battles for years and it's soul-destroying. 'stress' is so unlikely as a reason... As a number of PPs have said, UTI or other infection or dementia are much more likely. Parkinsons also causes hallucinations and can be hard to spot in the early stages.
For what it's worth, I have ended up writing letters to GPs and to PALS (I think it's called). People often seem to think PALS is a hospital thing but they cover all medical practice - I've been in contact with them about district nurses as well as GPs. The other thing is that councils tend to have some kind of 'response unit' which tries to provide help that will avoid hospitalisation. I've only ever used them for physical stuff like handrails and fall alarms but they can be useful to get someone 'into the system' and kind of start alarm bells ringing. Have a good look through the council's website.
I hope you get somewhere with this.

Thank you.

It's just a horrible situation all round as it's all on me. No other family at all.

Hi OP, older people’s social worker here. You need to contact the surgery and ask for the contact number for the district nurse. Explain your concerns.

Ask them to do a home visit to check him over, so an MSU urine test, blood pressure, blood sugar levels. Explain that he may need to be seen by mental health team, and these tests need to be completed to rule out infection induced delirium.

If the nurse states that she can only do this with the direction of the GP, inform her that if the GP refuses to authorise then you will speak with PALS.

You could also refer into the social care access team, providing your relative consents to this. Ask for a trusted assessment to be completed and for a period of assessment calls so that needs can be observed.
If he does not consent to this, and you are concerned that he lacks capacity to consent, still have the conversation with social care, they will assess and make a best interest decision if he is deemed to lack capacity following a Mental Capacity Act assessment.

But first priority is the hallucinations. He is alone and potentially vulnerable.

If I can help at all then do message if you wish.

Sorry, I wasn’t very clear. Contact the district nursing team and have a conversation with someone there about your concerns.

@Shallysally thank you so, so much.

Uti? This plus dehydration can cause this problem.