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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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

54 replies

itsallcheese · 16/07/2026 20:01

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? 😢

OP posts:
itsallcheese · 23/07/2026 17:18

Cyclebabble · 22/07/2026 08:26

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.

Admiral nurse team is a really good shout - thank you

OP posts:
itsallcheese · 23/07/2026 17:19

AdjectiveColourNoun · 22/07/2026 08:29

I PM’d you a few days ago @itsallcheese

Oh thank you. I can’t find my messages? I’m on the app. Where can I see my private messages?

OP posts:
itsallcheese · 23/07/2026 17:20

Off to see my mum tonight. Bracing myself for what I’ll be met with.

OP posts:
Dilemma999 · 23/07/2026 17:28

Sorry to hear about this. I’d be talking to her medical team about some mild sedation as she is so distressed.

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