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.

Saying someone has advanced parkinsons is not the same as declaring hallucinations, agitation, meltdowns, if the nurse and gp have not witnessed this then they don't have the full picture. Your choice of course but I would not be taking them on holiday.

I really feel for you OP. We took my DM and DF on holiday last year and will never go again.

My DM has early stage Alzheimers so nowhere near as bad as what you have described. We foolishly thought as it was a trip to a place she'd been before it would be fine but she was worse than looking after a toddler. She couldn't be left on her own at all, she kept imagining things which didn't happen, she was very sensitive to loud noises which made her confused and quite spiteful to my DC and she freaked out in the airport and on the plane due to being extremely anxious. It was the most stressful holiday I've ever had.

One afternoon DM said she'd lost her credit card in a cafe and we went on a 2 hour hunt for it before realising it was a card that she'd had around 10years ago that no longer existed. She spent hours wandering round the villa going into different rooms because she couldn't remember the layout. She kept losing things due to the unfamiliar location and became paranoid whenever we went out to a restaurant so we ended up having to stay in the villa a lot more than I would have liked.

DH and I had to do all the cooking, washing up, shopping etc for 6 of us as my DM was too confused by a different kitchen and different shops to do anything and my DF "wanted a break" And to be fair he was clearly exhausted from having to deal with DM alone a lot of the time at home. But me, DH and the kids hated a lot of the holiday and it was an experience I will never repeat!

Frankly at this stage I would be suggesting to your DH that you take your MIL out for a little trip to a local cafe or busy attraction this weekend to see how she copes. And keep your fingers crossed that she doesn't react well at all and forces FIL and DH to rethink holiday plans.

I think your DH and FIL are in total denial about how overwhelming travel can be when you’re in good mental and physical health, let alone when you’re anxious, prone to hallucinations and delusions. To be honest I think they need a jolly good shake but I don’t suppose that’s very helpful, sorry.

As it stands its been over 3 weeks seemingly without incident.

I saw her on Sunday and she did seem alot calmer and settled then previous.

After probing she is still hallucinating but aid she can tell that it is hallucinations and doesnt get upset by them.She is seeing the doctor on thurday again as her blood pressure is sky high and they have increased these meds to help with that

Im under no illusions that this can change in a second and aware the stress of the airport etc wont help any situation.

I would ask the doctor about the holiday, and if she needs a fit to fly certificate, people with dementia do take holidays, there are tips on this but you need to be honest with the doctor, airline and insurance company about potential problems.

Can you fly with very high blood pressure? It might be a bad idea. Ask the Dr on Thursday.

it appears yes, doc is aware shes going on holiday so did increase her eds last week and reviewing on thursday.

This is a very good idea!

It became obvious that my Dad didn't cope well with a busy shopping centre so the idea of flying was quickly quelled.
In fact when he went to an unfamiliar town, we realised that he couldn't travel, even in the UK, without great stress to him.

He potters around at home quite happily but out of his comfort zone, it's completely different.

Well, I wanted to come back and update.

MIL was worse that we originally thought albeit was in good spirits but hallucinating and very confused.

Sadly day 3 she fell coming out the bathroom and fractured her hip so that was that really.

Myself and DH kept everything good for the kids and FIL had to deal with the insurance/hospital and everything else.

She traveled home by private air ambulance the day after us straight into UK hospital.

She has been very very agitated and hallucinating constantly, i dont know if the trauma of the fall has caused her to mentally decline at a more rapid rate.

DH and FIL have come to terms with the fact she has probably advanced dementia and are now speaking to the doctors about it.

So sorry to hear about the fall.

It is very difficult to come to terms with a diagnosis involving dementia. And spouses often cover up just how bad the situation is, in part as the decline can be gradual and they don't realise how much they are covering.

That’s such a shame about the fall but possibly a blessing in disguise as she will now get the help and support needed and they are aware of how bad she is.

Wow, that could have been a lot worse I suppose.
I am also baffled by the unwillingness to put a label in the cognitive and dementia symptoms in Parkinsons patients, a quite debilitating level of symptoms seem to be accepted as normal for the disease. I believe if his symptoms had been taken seriously he would have a diagnosis of LBD and not PD. It was a traumatising and grueling few years living with the non motor symptoms before he was physically affected enough for the gp to want to pursue a diagnosis.

The GP failed to mention Parkinson’s when dealing with my brother although he had the shuffling gait and confusion. I don’t know why -perhaps because there is no cure.
I had to accompany DB to appointment and push the point. Only then was a psychiatrist appt made.

perhaps because there is no cure

There may not be a cure, but there are treatments. It should be diagnosed so it can be treated.

Thank goodness for the expensive travel insurance! I imagine it’s one of those situations where there’s no pleasure in having been right all along.

Sympathy for what sounds like a rubbish situation all round. I can well imagine the trauma for your MIL was increased by the fall happening abroad, although of course it could have happened anywhere.