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Late stage Parkinson’s disease

31 replies

gluenotsoup · 18/09/2022 21:00

Does anyone have any experience of this please?
My father in law has had Parkinson’s for a long time, 10 years or more. Over the last couple of months he has really deteriorated, and is suffering in every way. His movement patterns, speech, continence and all sorts of other things are severely affected. He has lost a huge amount of weight and looks so ill.

He has started to have delusions constantly that family members have been hurt, and all sorts of imaginings. He was admitted to hospital over a week ago, and if anything is worse. He can’t get out of bed, manage personal care, doesn’t always recognise us, and continues to have dreadful delusions. Unfortunately, we’re not getting any answers. Is this what happens typically, or is it something else that hasn’t been picked up? What should we expect next? How to help him best? And- is it likely to be that he’s coming to the end of his life?

It’s heart breaking to see him reduced and suffering, we just don’t know what to expect next.
Any experience shared will be greatly appreciated x

( I put this on the elderly parents section, but no replies so far, so put it here too. Hope it doesn’t cause any upset).

OP posts:
BinturongsSmellOfPopcorn · 13/02/2023 17:12

There's more info about advance decisions - and a link to a template - on the Compassion in Dying site. I found thatvsite very helpful for other information as well.

compassionindying.org.uk/making-decisions-and-planning-your-care/planning-ahead/advance-decision-living-will/

bonnoechismar · 08/05/2023 18:16

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Ilikeyoursleeves · 19/08/2023 18:33

@gluenotsoup
@Nappyvalley123

Sorry to resurrect this thread as I don't know what happened to both your relatives but I wondered if you could possibly let me know if that's not too upsetting? I found this thread on a search as my dad is presenting in exactly the same way (barely eating / drinking, recent infections & delirium (which has now settled), swallowing difficulties, constantly tired, can't stand or walk, fine motor skills barely nil, can't feed self or go to loo by self etc). I'm going mad trying to predict the road ahead 😢

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Nappyvalley123 · 29/08/2023 22:12

Hi, sorry for delay as I’ve just seen this post. My mum is plodding on and I now have carers in throughout the day for peace of mind. He may have a uti as they cause delirium, the nhs is terrible at monitoring uti’s in Parkinson’s as they don’t show typical symptoms. How are doing? I think a lot of it is down to frailty and also as they don’t leave the house as much a Vit D deficiency - I would get some supplements even if it’s not showing on his bloods.

SaintLeonardo2025 · 04/06/2025 23:18

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ThatNimbleAquaRaven · 23/09/2025 16:47

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