Why are they not diagnosing dementia

[justkeepswimmng]

My MIL has been diagnosed with Parkinsons for around 10 years.

She does not live well with it, tremors, generally feeling deathly unwell, anxiety re going out, I will say she has always had quite a difficult personality.

For id say round 2 years she has been suffering from memory issues, generally forgetful, forgets her words mid sentence etc, however FIL informed us about a month ago that she has been having hallucinations and disillusions and paranoia.

Husband has since witnessed 2 occasions in 2 weeks whereby she lost control, screaming and shouting saying we are conspiring against her, her husband is abusing her, shes being locked in a room with random people, her hallucinations come out of nowhere and seem to be visual, she sees my husband carrying a baby, or his legs are bleeding, her husband is in bed with a woman.

She is hallucinating every day but most of the time is calm about it.

If we look up dementia she fits every single symptom.

She has had bloods, which are totally clear been to her GP, spoke to her Parkinsons nurse and the consultant but apparently its not dementia as told to us by both MIL and FIL. How is that possible!!

Myself and DH are finding it difficult as her behavior is so extreme so if it isnt dementia its her personalty, and im struggling to be around her if shes choosing to be like that, which i dont believe she is.

Would like to hear other experiences or understand whats happening.

DO NOT go on holiday with her.

Medics see DM for 7 min when she’s on best behaviour (automatic). You know her.

There’ll be a crisis and an 🚑 . Been there, done it.

On the upside you can send the ambo with her in it straight back to the Parkinson’s nurse who’ll have to look after for a month in hospital.

Hrumph. Good luck OP.

No medical professional would say someone will remain stable. Having delusions, possible paranoia, advanced parkinsonism all need to be declared, it is then up to the airline if they refuse to take a passenger who could potentially come to harm or harm others. She would need extensive medical insurance and a fit to fly certificate. Anything less is irresponsible and unfair on everyone including mil.

I was told they sorted their travel insurance a few days ago....

But again i have no idea what they did or did not declare

Seriously. Just say you and the kids aren't going. You'll have a holiday at home. It's the only way and the only thing in your control.

Insurance won’t be valid.

Ask to see the documents, I would seriously not go with them, let dh go on his own and he can be her carer and take responsibility for them

I hear what you are saying, but ive booked it all and paid our share which amounted to around £7k, Im bloody going 😂

You can’t go on holiday with them. It is a disaster waiting to happen.

I appreciate your FIL is desperate for a break but he isnt thinking clearly. And it is very very unfair on your MIL. Taking her out of her familiar surroundings, taking her through airports and on planes and to an unfamiliar location is totally unfair.

And I would reckon any travel insurance will be invalid if they haven’t been honest about her situation.

My Mum had Lewy Bodies dementia. It’s not an easy one to get diagnosed sometimes.

I agree with this - it seems to be the only thing you can control in what it surely going to be disastrous and very possibly also traumatic and expensive as I suspect they've not fully disclosed for the travel insurance. Don't go, don't let the children go.

Before my DF was even diagnosed with Alzheimers my DM was determined to go on holiday abroad - just the two of them. Because it was an early flight they stayed in airport hotel the night before. DM has said very little about what happened, and now would probably deny all of it, but they came back home the next day, without even attempting to get their flight - and my DM was surprised that no one was surprised that it had ended that way.

I don't see how the OP's MIL will even cope with the airport, never mind actually being on a flight. Sorry, but this is a stupid idea (as the OP can see) and is going to end very badly.

Honestly, if I was told in advance that someone in your MIL's condition was going to be on a flight with me - I'd change my plans - different time, date, airline. It would be horrible to be on a plane with someone actively hallucinating and in addition, if that happens, the flight will probably be diverted to get her off and into hospital.

I wouldn't go - will be a miserable holiday and even in the best case scenario you'll always be on edge with uncertainty.

Also to clarify, this is OUR holiday that they added onto.

I booked it all, everything, transfers, flights, villa.

it is our family holiday that they have added onto ad paid for their share.

I agree with everything you have said x

Ok - so really you need some way of convincing them of the reality that it will be a shit show and that MIL isn't fit for this holiday - it will undoubtedly be distressing for her. Can you arrange respite for her and give FIL a break? Or can your DH stay behind with her? Or is he is denial and thinking everything is going to be ok?

Respite is an absolute no as she is lucid alot of the time...or appears so, so i feel like they would say to me (FIL&DH) that it isint at that stage.

I dont want DH to stay behind, he really deserves this holiday.

Id say they arent in denial but equally think it will be fine, as in "we just need to get her there and it will all be fine".

Selfishly and im sorry this sounds awful of me, im hoping for another freak out from her to cement them not coming, i know how bad that sounds.

Well, you can't have it both ways. Either you care about the human impact of throwing kids and MIL together for a holiday on them or you don't.

With your update you could go but have no plan to assist them getting to the airport, checking in, ,etc let them make their own plans. You could contact the travel agent, airline, airline assistance and their gp to say you are concerned about her and that you will not be helping them in anyway.

If you can't cancel, you need to be really certain they have full insurance with all medical conditions properly declared.

Show your DH the news story about the man currently stuck in Turkey with £40k of medical bills. https://uk.news.yahoo.com/seriously-ill-dad-stranded-turkey-230200728.html (and that's only the hospital bill; when he is allowed to leave, medical evac is likely to be several thousand more.).

Even with insurance the costs can be horrific. Some family friends of ours recently had £80k of bills to pay after a medical incident abroad. Fortunately they were fully insured and got it all back eventually - but they still had to pay that out of pocket before reclaiming.

Honestly thats really mean, the OP has been sidetracked, admittedly by me re going on holiday but i just anted to give the full picture.

and of course when this holiday was booked last year there was zero indication of this.

My children love her dearly and she loves them, she has never shown any of these symptoms in front of them.

I know what could happen, believe me Ive went to the darkest depths with this but this is our holiday, my kids cant wait to go.

Im not niave, but also hoping that it doesn't rear its head.

Honestly i was banking on a dementia diagnoses which would have sealed the deal with them not coming, but that hasnt happened so here we are.

Id say they arent in denial but equally think it will be fine, as in "we just need to get her there and it will all be fine".

How is that not denial?

Just spoke to husband.

He said the insurance cost them close to £1000 and they were referred this company by their Parkinsons nurse.

Of course I get you want to have your holiday. But you say you're worried that she will hallucinate, melt down and traumatise your kids. Would you let a rando freak out at your kids if they offered to pay you £7k for it?

The money is spent. It's a sunk cost (unless you have grounds to claim on the insurance for it). The only question left is whether it's better for you and the DC to spend that time trapped in a villa with a hallucinating woman or peacefully at home.

That at least sounds slightly reassuring on the insurance front.

I've been on holiday with someone who had Parkinson's with hallucinations and the start of dementia. She was confused, wandering round the apartment lost, trying to get into bed with us instead of her husband. It was difficult and stressful. If we had had children with us, it would have been very disturbing for them because it was for us. I'm sorry OP, but you must rethink this, all of you. Could someone film her during the bouts of hallucinations to show the consultant?

It will be if they have taken out specialist insurance and declared all medical conditions. There is typically a very comprehensive form and they contact for more information sometimes including the GP

The OP says that it is specialist insurance (although £1000 seems cheap)

It appears this has been the case as he was on the phone for hours with them but im not 100%.