A person with dementia and Parkinson’s can’t be stuck in hallucination and delirium forever

[itsallcheese]

My DM was diagnosed with Parkinson’s over 14 years ago. This year she was also
diagnosed with mixed dementia - Alzheimer’s and vascular dementia (extensive small vessel damage).

She’s now in a care home. She’s had hallucinations on and off for about 4-5 years but up into this past year they’d be fleeting, not distressing in theme, and would pass without much intervention.

This year has been much much worse. Several longer episodes. Some triggered by a UTI, but once treated, would abate.

Not this time. She’s been escalating for about a month. The care home is excellent and tested her urine immediately. Treated her for the UTI. But she’s worse than ever, and it’s nearly a month of her being stuck in this state.

Going to see her is absolutely heart wrenching. Anyone who has a parent with these conditions knows that the long goodbye is utterly horrific. I’ve seen more than my fair share of horror. When I saw her this week she broke my heart into pieces. She’s terrified. She has insight to the fact she’s very ill. She’s crying a lot. Talking about death. She’s essentially like my child. I can’t stay and hold her and calm her every day because I work full time and have young children. The RITT team have been informed and will visit her soon. It seems madness that there is nothing to stop this awful, awful mental torture. I can’t bear to see her so frightened.

Does anyone know what can be done to break this latest cycle of mental decline? Or AIBU and this is just it now for the rest of her poor existence? 😢

Thank you for everyone’s kind words. I’m going to speak with the Parkinson’s nurse. On reflection, the extreme ramping up this time coincides with them adding in extra madopar tablets to her regime.

I’m so sorry. Dementia is so hard to cope with.

My friend is barely alive, doesn’t even open their eyes, non verbal, can’t move. Consultants say they could last another ten years. 😞

Now care homes are expected to meet this need.

I'm so so sorry you're having to go through this. You are doing you're best, that's all you can do. I had similar with my dad and it's absolutely soul destroying. I'm sure people who have had the same experience will understand when I say that I felt relief when he died, for him and for me and my family. One thing that I did that was helpful was get in touch with the local hospice (there were several indications that he was at the end stages but the care home didn't agree so I took matters into my own hands). They came and assessed him, and although they didn't take him into the hospice itself, they provided lots of advice and support which I found invaluable (especially in his last few days). We also directed the care home that we didn't want him to be given any more life prolonging treatment, just kept comfortable. Please also take care of yourself as much as you can, it's really hard not to break when going through something like this.

I am so very sorry to hear this OP, and my heart goes out to you. My dad went through very similar when he entered his nursing home. The only thing that I could suggest is that you check with the nursing home that your mum is getting her medication on time every time.

i’m So sorry OP this is the toughest thing to go through. My Mum was like this in the last couple of years of her Alzheimer’s. She would scream and cry constantly. Like you I would comfort her but you can’t be there all the time, and it didn’t always work anyway. I can still feel her fingers digging into my arm as she rode out a screaming session, and remember her asking for her Mum and Dad to come and get her, over and over. I tried to get her on stronger medication but the mental health team and consultants were so slow to help, despite my constant calls, the prescription came through finally for stronger medication a few hours after she died in my arms, she was 68. She didn’t deserve to go through those final years, it served no purpose other than to torture her and traumatise me and her brother. We both needed counselling afterwards.

Someone up thread said you can’t consent to assisted dying at this stage of dementia. Well, I consent now not to go through this. I consent not to traumatise my loved ones and live in a perpetual nightmare state whilst in the last stages of a terminal illness. My Mum, when she was well, would have also consent. We just need to be asked earlier and have a wishes respected. As half of us will likely get dementia it’s not an unreasonable thing to plan for.

I am so very sorry to hear this for you OP. My DD father has Parkinsons and I fear this for her . It does seem unbelievable that there is no medical intervention to help with this . I know that care homes might not be able to administer certain meds . Surely the results outweigh the risk .

You are doing the best you can . The way you are expressing your concerns here leaves no doubt in your commitment to your mother . Your father would be proud of you . 💐

Thank you for everyone’s kind words. It’s helped a lot. I went to talk to the care home manager today. We are going to try to reduce the extra madopar tablets and see what happens. She’s also very very low on ferritin, just 1 digit over the below range. I’m pushing for an infusion to boost ferritin because low ferritin does not help with cognition problems.

I sat with my mum in the garden today, and just held her hand. It’s all I can do right now. Earlier this week she told the care home manager she could see grey planets in the sky. This freaked him out a lot. As I sat in the garden today, she casually mentioned she could see weird planets again. When I looked up and through some tree branches, I realised she was actually looking at two grey satellite dishes on the side of a building 😂 . Which is quite a relief to be honest. Because at least her hallucinations are based on some kind of reality! There is always humour to be found in the darkest of days.

We refused the flu and covid vaccines for my mum in her last year as it just seemed cruel to give her anything that might prolong her suffering. Also refused NG feeding after her appetite decreased.

We do this with my MIL. But my DM has capacity and after refusing them when she was more lucid, now she’s declined she’s decided she’s having them again 🤦‍♀️

In a way it’s neither here nor there. My MIL got a chest infection this year, and despite us saying no to antibiotics, all vaccines, the GP pressured until we gave in and agreed to antibiotics. She bounced back, to continue on her miserable existence.

I have a family member is a similar position. It has been about 14 years also. Through having Parkinson’s she has met lots of other people with it. She made good friends with one couple.

The man had the disease and began to have hallucinations that were putting the wife in danger. He was not able to visit home for a while but they did get out under control with tweaks to medication. He now safely visits the house.

I’m so sorry. This is awful. I lost my DF to dementia and recently DM to cancer, she had horrible delusions on the days before she passed. Does your DM have a DNACPR/ living will? It is utterly horrific to deal with. I don’t have anything much useful to add but wanted to send love and solidarity as I know just how hard it is.

My grandmother was given sedatives.

Can you get a second opinion? Im so sorry.

The Parkinson’s nurse has been and has agreed to reducing the madopar to see if this reduces the symptoms. It’s not getting better this week - in fact it’s getting worse. She’s scaled a few fences, is combative, disrupting other residents (not aggressive at all but getting involved and creating drama for no reason). I’ve also had a phone call from her (she forced one of the care staff to call me) where she screamed and cried down the phone begging me to call the police. I couldn’t think how to calm her down so I simply told her I’d call the police and that they’d be on their way. I put the phone down thinking, is this what she is reduced to. That I have to go along with it and lie to her to try to comfort her. I know they’ll try to sedate her if she can’t stop compulsive actions like climbing fences that put her at risk. Now she’s not allowed in the garden area without a member of staff. Which won’t be often because they don’t have the staff ratio to do it. Gardening was her passion. And now even that is being removed from her. 😔 It is so shit. I’ve never felt more helpless.

It is really shit, @itsallcheese, I'm so sorry. Hopefully the reduction in the madopar will help. I understand the feeling helpless, wanting desperately to make it better but knowing you can't. Please know you're not alone in these experiences, and you will get through it, albeit somewhat battered and bruised.

Hi OP, I care for my DH with LBD dementia. Firstly it is indeed a horrible experience to go through and there is no getting away from this. Make sure you have support IRL for what you are facing. For the hallucinations, drug therapy can have quite an impact. Rivastigamine is widely used to control hallucinations. I would make sure you have spoken to her consultant or the community mental heath team. It can take quite a while to get to the right drug therapy and dosage and this area of the NHS is underfunded and I would say undercared. You need to find out who can support make a difference and how you get in touch with them. The Admiral Nurse team might be a good starting point. These are nurses specifically working with demential and they are mostly charity funded. From experience they will be useful in finding a way around the system.

I PM’d you a few days ago @itsallcheese

I did this with my parents, and then my late husband’s condition gave him permanent delirium and hallucinations.

It’s all awful. It’s tiring and distressing to watch, along with trying to comfort the ‘patient’.

Try to get some support - one day it will be over. 🌺

I noted your comment about the hug calming her so went looking for articles about Temple Grandin. en.wikipedia.org/wiki/Hug_machine

It occurred to me that some sort of corset, swaddle or something like a thunder jacket for dogs might be of use.

But I know nothing. Ignore me if it suits.

I am sorry for you both, I have been there are it's truly grim. I can only reiterate something that a pp said, look very carefully at her surroundings. A dark coloured door in a pale wall can be seen as the gateway to hell from which all kinds of horrors can emerge. A dark coloured rug is a bottomless drop to who knows what. Previously treasured photos can conjure very different images in her troubled mind. Trivial I know.

At age 91 my Nan had psychosis with her dementia including bad hallucinations; in the end she was sectioned & sent to an EMI unit. They were very good in that unit actually.
So the psychiatrist thought she had Lewy Body (which is a dementia linked to Parkinson’s) although she’d not had a Parkinson’s diagnosis; then they thought it was Vascular Dementia with stand alone psychosis.
Either way; she had to be medicated covertly (my Mum had to give permission) with an anti psychotic.. after a couple of weeks on that the hallucinations began to fade and my Nan gradually became her usual self again with just some forgetfulness. It was so nice to see.
So as she’d been sectioned she had funding for a nursing home place & we looked at the 2 homes they suggested.
But sadly she did pass away quite soon as she got aspiration pneumonia which is very common with dementia. But at least she was a much happier person for some time.
So I’ve given her story to say that things can improve.
I don’t believe personally that all people with Parkinson’s can’t have any anti psychotics at all! I would do some research online especially looking at the newer drugs. Because there will be younger individuals with Parkinson’s who suffer with disorders such as Schizophrenia. Maybe contact MIND for information?

So many kind people have responded. Thank you 😭

I have wondered lately if getting sectioned is actually ‘better’ for my mum long term - but from what I know, you’ve to be extremely dangerous to yourself and others to be sectioned.

I’ll definitely research some alternative antipsychotic medications - thank you

The care home manager mentioned de cluttering her room to reduce her confusion and for the reasons you’ve mentioned here too.

Maybe a weighted blanket if it wasn’t so hot