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Elderly parents

Why are they not diagnosing dementia

65 replies

justkeepswimmng · 18/06/2024 12:05

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.

OP posts:
DreadPirateRobots · 19/06/2024 11:51

justkeepswimmng · 19/06/2024 11:32

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

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.

justkeepswimmng · 19/06/2024 11:48

Seeingadistance · 19/06/2024 11:42

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.

OP posts:
Seeingadistance · 19/06/2024 11:42

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?

justkeepswimmng · 19/06/2024 11:40

Seeingadistance · 19/06/2024 11:39

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.

I agree with everything you have said x

OP posts:
justkeepswimmng · 19/06/2024 11:39

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.

OP posts:
Seeingadistance · 19/06/2024 11:39

justkeepswimmng · 19/06/2024 11:32

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

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.

Seeingadistance · 19/06/2024 11:35

DreadPirateRobots · 19/06/2024 11:28

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.

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.

Peridot1 · 19/06/2024 11:33

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.

justkeepswimmng · 19/06/2024 11:32

DreadPirateRobots · 19/06/2024 11:28

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.

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

OP posts:
MissMoneyFairy · 19/06/2024 11:31

justkeepswimmng · 19/06/2024 11:23

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

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

Supersimkin7 · 19/06/2024 11:30

Insurance won’t be valid.

DreadPirateRobots · 19/06/2024 11:28

justkeepswimmng · 19/06/2024 11:23

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.

justkeepswimmng · 19/06/2024 11:23

MissMoneyFairy · 19/06/2024 11:18

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

OP posts:
MissMoneyFairy · 19/06/2024 11:18

PermanentTemporary · 19/06/2024 10:01

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?

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.

Supersimkin7 · 19/06/2024 11:01

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.

Tinkerbot · 19/06/2024 10:45

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

DreadPirateRobots · 19/06/2024 10:40

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.

Marblessolveeverything · 19/06/2024 10:37

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

justkeepswimmng · 19/06/2024 10:29

Tinkerbot · 19/06/2024 10:26

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.

OP posts:
Tinkerbot · 19/06/2024 10:26

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.

justkeepswimmng · 19/06/2024 10:15

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.

OP posts:
Marblessolveeverything · 19/06/2024 10:02

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.

PermanentTemporary · 19/06/2024 10:01

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?

PermanentTemporary · 19/06/2024 09:58

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.

MissMoneyFairy · 19/06/2024 09:51

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.

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