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.

Hallucinating is a part of Parkinson's. My dad had them though luckily they were surreal rather than these sad and alarming ones. My condolences.

Parkinson's with lewey body is a subtype that leads to hallucinations and dementia. It is not the same as Alzheimer's but there is treatment and the doctors should be able to name it and find ways to help you deal with it.

The issue is shes believing these hallucinations, so she fell off the toilet, but told us her FIL dragged her off.

FIL popped to the shops, my husband spoke to her on the phone and all ok, but that night she said he had locked her in the bedroom all day with lots of people roaming about the house.

I can't offer much help but just wanted to say that I understand how difficult this is for you. My Mum didn't have Parkinson's but did have acute hallucinations much like your mother, which became near constant as her dementia progressed. It was so so difficult to cope with, so I really do feel for you. It was made more difficult in the early days because when social workers assessed my mum, they always wanted to see her without me there, and because my Mum still sounded very lucid and plausible, they believed what she said. They had no idea that the sister she said she had been shopping with the previous week had been dead for 10 years, or that her brother hadn't really been knocked down and killed by a hit and run driver, which she had witnessed a few weeks ago, and had actually died from cancer 20 years earlier - or that all of her family apart from me, my husband and daughter lived at the other end of the country. The social workers didn't seem to understand that there might have been a slight issue when my mum, who was 93 at the time, talked to them about her mum coming round to see her the previous day! It wasn't until she started talking to imaginary children when social workers and doctors were present thst they started to believe how difficult things were getting.

I really do hope you get the help you need and recognition of your mum's condition. It's so soul destroying watching someone you love go through such a huge traumatic change in their lives.

apparently its not dementia as told to us by both MIL and FIL

I think it may help to explore this a bit more with them. A lot of people use dementia interchangeably with Alzheimers. But 'dementia' isn't really a disease - and certainly not a single disease - it's more of a cluster of symptoms that can have many different causes.

So it's very possible that she has dementia-type symptoms but doesn't have Alzheimers. Or that she doesn't have a specific dementia separate from the Parkinsons. Parkinsonian dementia can lead to just the symptoms you describe without there being a separate illness going on. But it's also possible for Parkinsons drugs to cause similar delusions and personality changes, so it would be worth asking for a specialist drug review to rule that out.

But whatever that cause (unless it's a drugs clash) the specific diagnosis is likely to be less useful than finding out if they can give you any help with management strategies.

From what Ive been told,

They have lowered some medication and removed a bladder tablet she was taking, however we had been told it wasn't medication.

My main issue is we are going on holiday with them for 2 weeks (abroad in a villa) in 2 weeks and quite frankly im dreading it 😫

My relative has LBD and the hallucinations sound similar (people in the house, animals in the room etc). Luckily not the screaming and shouting, but he did go through a phase of paranoia, and now often seems to exist mentally in an almost parallel reality. He also has some Parkinsons symptoms, but the dementia is definitely the key feature.

Real sympathy over the holiday - tbh I'd be quite concerned about how your MIL will cope, particularly in an unfamiliar environment. A change of environment has always made things worse for my FIL. Two weeks is a bloody long time. Is there any possibility of cancelling? Does your MIL understand that she's going and want to go? Does she have a Parkinsons nurse, and have they given any view on your MIL's ability to cope with a holiday?

Oh dear. I agree with tobyj, the holiday could be a very bad idea - especially abroad where abandoning it part way will be tricky. Delerium can easily be triggered by unfamiliar surroundings or lack of familiar routines. Is cancelling possible?

I think you are sensible to be worried about going on holiday with MIL. If she is like this in her everyday environment it's going to be very difficult when you are away.

Can her GP say she's not well enough and the travel insurance can be claimed on?
I hope she has travel insurance.

Yes the holiday sounds like something that should be postponed, or you should go without them. Someone who is hallucinating every day is not likely to do well on long journeys to an unfamiliar place. Would it be easier to talk about the symptoms like hallucinations rather than dementia? The symptoms definitely make the travel a poor idea imo.

I don't think the holiday is a good idea, would mil be travelling, if so it wouldn't be safe for her and could put the flight at risk so would not be allowed to fly. Has the dr ruled out acute delirium dehydration, constipation and infection. She will believe the hallucinations but its not her fault, is she safe at home or is she needing residential care now.

The hallucinations sound like Lewy Body Dementia a very specific form of dementia that is very different to Alzheimer’s. It is often a co-morbid condition with Parkinson’s, but not always.

My dad has LBD but not Parkinson’s, he also believed his hallucinations were real therefore medical staff called them delusions rather than hallucinations. Some of them were absolutely terrifying for him.
My dad Is now on medication which has reduced the hallucinations/delusions immensely. He’s on Revistagne (Not sure if that’s spelled correctly).

Your mum will need to be seen by a dementia specialist nurse for assessment (if this hasn’t already been done) who can then refer to a psychiatrist who can diagnose LBD and prescribe medication. Your mum’s GP can refer her to the dementia service.

Speed is of the essence, the quicker she gets diagnosed and medicated the better it is for her because living with these hallucinations/delusions is absolutely terrifying for them.

Thank you

Parkinsons nurse said there is no reason she cant go on holiday!! which i was actually quite upset about.

I will say for around 10 days she has been "stable", still hallucinating but no violent outbursts.

I mean they could cancel but FIL is absolutely desperate to go and that seems to be clouding his judgement as im sure he is going through a hell of a time at home and wants a break.

But we will have my 3 children there, all under 10 and i am worried about her having some sort of meltdown.

I agree with everyone's comments wholeheartedly regarding the holiday, the issue is my hands are tied.

My husband and FIL seems to be in a bit of denial about the whole thing but what makes it worse is that medical professionals are telling them its not dementia....my fear is they are not telling the medical professionals the entire story.

I imagine they will be saying she is hallucinating but to what degree im not sure, the fact that she believes them and gets distressed with them, waking up her husband at 3am screaming he has a woman in their bed, her son walks in and she asks who the girl is with him.
There are times when she will ask if they see X and they will say no and she will accept she is hallucinating.

My main concern is the unpredictability of it, the 2 times that she was in an extreme dillusion she went for FIL (husband had to get in the middle) and it went on for about 3 hours.

The second time very similar, althought this hasnt happened for about 10 days now.

Im just so shocked that no one is even investigating the possibility of dementia.

I spoke frankly with my husband and said how concerned i was and he agreed that if she had any more episodes he would speak to them about the holiday but there hasnt been, so we are away a week on Saturday.

It gets called Parkinsons dementia rather than Lewy Body if you already have a diagnosis of Parkinsons.

Her medical team may be trying to exclude this being caused by her Parkinsons medication before diagnosing dementia- you say things have improved with meds changes.

Or MIL and FIL are minimising how bad things are when they are seen.

Or just the medical team aren't getting it.

I'd keep pushing for repeat reviews as there are treatments available for this.

With the holiday zi would ask the gp for a fit to fly certificate, what happens if she becomes agitated, distressed and confused on the plane or at the resort. Your dh can speak to the gp with his concerns, does anyone have power of attorney.

Right.

First of all your hands are not tied. You can say that you are not prepared to travel with her while her symptoms are not under control - for her sake and your sake as a group.

It's hard to be the bitch who says no. But you can. Cancel the whole thing, or one parent goes with FIL the kids and the other stays behind with MIL. An alternative would be respite for her, but that would probably also result in disorientation for her and possibly a hospital admission.

Then do you have a contact number for the Parkinsons nurse, or a name? Ring or email them, telling your husband you're doing it. Say you're looking for guidance on the holiday decision only. Tell them all the symptoms that concern you and ask how to manage them. They may or may not engage wuth you but the response should tell you if your DH and FIL have been honest.

What could a GP say that a specialist nurse hasn't? IF dh and FIL have been honest, the nurse appears to be saying that symptoms that are currently stable will definitely remain stable when travelling. I think that's a big statement but a GP is not going to actively contradict that?

Your updates indicate it is absolutely necessary to have a frank discussion with the family and medical team. What on earth is the plan if an episode occurs on the plane?

What also needs to be sorted is a break for FIL he may be in survivor mode a break may help him gain perspective.

Yes, I know you are all correct.

I have tried to have conversations but DH is getting defensive now.

Ive just looked back and its been 13 days since her last dillusion in which she believed we were all out to get her and put her in a home and get men to take her away. Since then she has been calmer but still actively hallucinating every day.

Husband said he can tell when its about to happen, her eyes are wide eyed and bulge out.

Her nurse advised at the start it wasnt due to her medication but they have changed a few things however that happened about a month ago, maybe its taken a month to even out and it has helped, honestly im not sure.

There is the Montreal cognitive assessment test which you can download and see what sort of tests are sat.
i think she will be totally confused in strange surroundings. And more at risk of falls. Who will be looking after her while DF ‘enjoys’ his holiday? I assume DH.

Sorry to clarify, she is coming on holiday with us.

Me, DH, 3 kids, FIL & MIL.

2 weeks in a villa.

Ask DH what will his plan on the plane. He is a aware not disclosing this will invalidate her insurance so has he hundreds of thousands are.aside for reparation privately if she gets banned.

I wouldn't be going ans neither would my children. It isn't fair but not disclosing this to medical and airline is negligence.

I appreciate I am thinking worse case scenario but very conscious that this is a disaster waiting to happen

Your only real option here is to decide that you and the kids aren't going on holiday. So... I'd do that. Don't expect to be thanked for it, in fact if MIL fails to cope with a change in location, as seems quite likely, there will probably be dark muttering about how it wouldn't have happened if you were there, however illogical. But if you're concerned about the impact on your kids and indeed on MIL, then it's the right thing to do.

I found doctors reluctant to acknowledge DB’s problems - maybe because there’s no cure or magic medication.