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? 😢

I'm so sorry, dementia is truly awful. Do you have PoA and can you have a say in treatment?

Can they give her any sedatives or similar medication?

I am so sorry you are going through this. My DM has just started the dementia journey and that is hard enough 💐

Not a parent but I've had a relative with parkinson dementia
Imagined all kinds we were all in danger that kind of thing. It did pass but was distressing to see

I’m so sorry that sounds so hard. Could you speak to her dr they may be able to give a sedative.

I’m so sorry you & your mum are going through this. Dementia is an awful disease.

In truth, everyone’s experience is slightly different. It does sound as though your mum might benefit from a medication review. To see if there’s something better to help with her current symptoms. This would usually be done by the Memory Team/mental health specialist rather than the GP.

a father of one of my friends when I was young had this.

it did not resolve and care homes were not prepared to meet need so he went to an elderly mental health locked ward.

that was some time ago

Dementia is so cruel. We lost DMIL to age and dementia and DH still has to blot out his memory of his mum shouting Mummy! Daddy! Kill me now! She was 94, with a fractured femur and no coherent memory, exacerbated by morphine, UTIs and all the noise of a geriatric trauma ward. When she was returned to her care home as 'they had done everything possible', she died five hours later.

With that level of need she might qualify for continuing healthcare (if she’s funding her own care home).

I’m so sorry, I think you should press for sedatives or anything that will make her less distressed. It’s such an awful disease

When my aunt was like this, we got her an appointment with a neuropsychiatrist who prescribed an antidepressant that helped.

It is awful. I've seen it, and I'm so angry that we don't have any laws to help people. Abortion was effectively legal and free since the sixties (not exactly true, but older people have said that in reality, it has been for decades even if not officially decriminalised) because a civilised society doesn't want to force women to be pregnant for 9 months and bear children against their will.
Yet we're ok about leaving people to suffer in this way. All I can suggest is supporting legal changes as much as you are able to-I'm sorry I can't do more.

Thank you for your kind words. It’s really nice of you to respond. Yes I have POA. She can’t have antipsychotics because you can’t have those if you have Parkinson’s. She is on an SSRI for anxiety. At night she has a very strong sleeping tablet which is basically a sedative and anti anxiety drug.

I feel like I am failing her. I’ve spent over a decade fighting for her. I’ve almost no fight left in me - the diseases are winning and I’m so out of hope. I’ve done more medication reviews and consultations than I can remember. No pun intended.

I also have a MIL with Alzheimer’s. She was hitting people so her doctors drugged her extensively, and she’s so sedated now it’s heart breaking in a different way. Literally a drooling, quiet shell.

I miss my mum and feel it’s time to let her go just to release her from this pain and save her. But I know I can’t save her. I have no control over how long she will endure this.

I hate these diseases so much.

I'm so sorry. All I can say is it will probably pass when she goes through the next downhill decline. - usually they decline sharply then stay stable then decline sharply again. In the meantime echo trying to get some meds to help.

This is just terrible. I’m so sorry. Hospitals are the worse places for people with these conditions. I’m scared they might section her and she’ll end up in hospital. I will do everything in my power to avoid a hospital admission. I wish my dad was here to say, ‘heah, you are doing the best you can.’

I’m sorry. I am feeling very low tonight. 😢😢

This weeks hallucinations have been about her losing a premature baby, funerals of babies, babies dying, her blaming herself for the deaths, weird men chasing her, fish hooks in her wrists, the local newspaper posting terrible things about her family.

All I can do when I see her is get in bed with her and hold her. She’ll cry and sob. She will eventually calm when she feels my hug. But I can’t be with her every day. I’m so devastated.

Big sympathy from me OP. My DF had Parkinson’s and then Lewy Bodies Dementia- which is closely associated with Parkinson’s. It was truly horrific and I wouldn’t wish it on anyone. He had a difficult childhood and was neglected and it all came back to him. He imagined so much stuff and also imagined that he had done some horrible things too and felt guilty. Sometimes we’d go and there had been murders and marauding riots outside, all sorts. Contrary to the usual advice on dementia to just go along with it, we used to try and reassure him it was a dream. He would cry so much too.

I don’t know what to say OP but you are not alone. Antidepressants and sleeping pills do something at least, and distraction helps. Reading poetry helped as that was one of his loves. Listening to music he recognised too.

best luck OP

I’ve just come off a WhatsApp call with my mum. Dad is in the room with her but barely joins the conversation. He was diagnosed with Parkinson’s a couple of years ago and I can see the decline.

Dont know what to say, OP. These diseases are so cruel and drawn out - horrible watching them diminish.

She needs a review from either her Parkinson's team or Older People's Mental Health. Usually Parkinson's meds are pared back to a bare minimum. There are meds that can help such as quetiapine.

They’ve just increased her madopar in the last month….She was on the very expensive, very difficult to get, duodopa pump, but that sent her loopy so she was taken off it last year.

My father developed delirium after COVID and it was terrible for him.He was hospitalized in a general hospital where he thought the male staff were the police, thought he was going to be shot and could see rats and spiders.
The opinion seemed to be that it was a temporary condition but he only survived a few months.He was given very little medication except for a day when he decided he would kill the patient next door because they had the same girlfriend.

That wouldn't make a difference here as she's unable to consent.

Could it be mum has lewy body dementia ? That is associated with parkinsons and hallucinations are common place An article I found which may be useful Lewy body dementia (LBD): symptoms, diagnosis and treatment - Dementia UK Im so sorry you and mum are going through this awful time I lost both my parents to dementia It really is the most awful soul destroying and heart breaking disease 😥

If delirium has been ruled out I think a meds review is needed with both the Parkinson’s and Older Adult Mental Health team combined (as a previous poster has mentioned). Have the symptoms got worse since starting on the new madopar? Sometimes Parkinson’s meds can cause hallucinations. There are some antipsychotics that she might be able to have as well. Sorry you are going through this 💐

@itsallcheese you’ve just described the last few years of my dad’s life. It’s horrible. He died over 30 years ago. Sending you hugs and support. Parkinson’s and dementia are both such cruel diseases.

First of all I’m so sorry.

madopar can increase hallucinations. I agree a review with the Parkinson’s consultant would be very helpful. Sometimes it’s a very fine balance of madopar to help reduce the hallucinations.

on a practical level I would advise utilising cognitive stimulation therapy to help with engagement and orientation. Google it, it’s a very simple and effective technique and a great comforting distraction.

think about what she has always found comforting. Music she likes… pictures… colours.. comforting toiletries. Make a picture book with explanations of who people are and encourage the care home staff to also go through the pictures. Personalise her room as much as possible.

if she is hallucinating, look at her room.. mirrors things that create shadows can cause an awful lot of distress and can be easily misinterpreted.

also delirium can take up to 3 months to resolve and get back to baseline. Since she is prone to it it is so important to have good nitritiom amd fluids.

i am really sorry your mum is suffering through this ❤️

I just wanted to say how sorry I am for you and for your mum going through this. I don’t have experience of Parkinson’s but my dad had vascular dementia which came with hallucinations, it was upsetting for both of us. I think there was about a year between when he first had these symptoms to when he passed away but I think he was aware of a lot less towards the end. But that’s not to say in anyway that this would be the same for your mum, as he did not have Parkinson’s. And I know that dementia is different in every one as it affected my mum very benignly. This probably isn’t helpful to you in anyway, I just wanted to say I am sorry as I understand how horrible it is.