Advanced parkinsons and PD dementia

[Pianokicker]

My mum has advanced parkinsons and is now 'off her feet', with this has come a really rapid mental decline from a bit confused in Feb to not knowing who my dad was today. Her physical state is extremely frail and now her care home are worried about bed sores.

Sorry, I don't mean to upset anyone, but I'm wondering how long she can live like this?

Thanks for reading.

I'm so sorry to hear about your Mum. My Dad had Parkinson's, we lost him last year after a long fight. It's horrible to see a loved one suffer like this - can I offer un-Mumsnetty hugs?

The simple answer to your question is that nobody knows. I think one of the horrible things about Parkinson's (and there are so, so many) is that people can live with it, and deteriorate so much, for so long. I know I asked the same question as you many times as Dad's condition deteriorated.

I'm so sorry.

My cousin is like this, only 69 and a really rapid decline. His symptoms are predominantly dementia, so it may be more Lewy Bodies dementia than pure Parkinson's.

I think when it comes to immobility and bed sores then they are at risk of infection that can end their lives- but it's difficult to predict. to you, it's particularly difficult in the time of corona.

Sorry to hear about your Dad Danger, hugs accepted here.
It's been awful to see the physical deterioration but I wasn't prepared for the dementia part, I had always thought it would occur over some years. I know the question I asked is a bit like 'how long is a peice of string?' I suppose what I'm looking for is reassurance/stories that this won't be for too long.

I'm sorry for you. I lost a parent to this is disease and they were only in their late 50s.

@cathyandclare
Sorry to hear about your cousin, 69 is too young.
I understand another big killer with parkinsons is aspiration pneumonia, mum has a very weak voice and can hardly muster a cough so maybe that's what will take her. And yes it's extra hard at this time, she went into a home recently so we haven't been able to see her. I'm wobbling between worrying that she won't know who I am when I can see her to worrying that she'll have to exist like this for years?

Sorry for the ramble.

It can be a while. My mum is 64 with parkinsons and lewy body dementia. Its horrid. Mum had a hospital stay for 10 days last year. She went in being able to go to the toilet and feed herself and came out wearing nappies and having to be fed like a baby. She got better after a few weeks. But she has been home now for 3 weeks after a 5 week stay in hospital and we are at the point of basically waiting for death. Its agonisingly heartbreaking. Mum never wanted to be like this. She cant do a single thing for herself, can barely talk. My dad is in bits blaming himself for her hospital stay. She cries every time a carer touches her, she has problems with the catheter every other day, she refuses to eat or drink, bed sores, painful swollen joints. In a lucid moment last week she told dad she wants to die and I honestly cannot blame her. I hate to be the bearer of bad news but you could be in for an agonising time. I'm sorry you have to go through this as I wouldn't wish it on anyone.

First you have probably checked if her 'mental decline' is 'only' a sign of an undiagnosed urinary tract infection - that can send them doolally - or low sodium levels - done by a urine test and blood test. If it's either of those it can be largely rectified.

Otherwise, well, based on my late mother's experience... you'd have to be on it all the time. Many care homes don't give them enough drink - it seems to be a cost-cutting variation on the notorious Liverpool Care Pathway - and after many years I got the distinct impression they aim to kill off those with advanced Parkinon's anyway so long as they fulfil a checklist - and not having mental capacity would certainly be on that. Not being able to talk much would be another.
This may be because Parkinson's drugs are pricey or because they say you don't die of Parkinson's so can linger forever, or because if they don't die of something else, the actual end - impaired swallow and so on, can be nastier.
Others in the nursing category got the same 'treatment', however.
Of course, as a death saves the local NHS CCG and local Council money, it's all quite toxic - still we've seen that in the way that hospitals ushered in Covid-riddled patients into care homes.

A pressure sore if left can be fatal and being a potentially painful wound will put them off their food.
Without hydration and nutrition the end can come within two weeks or so. Nobody gets into trouble over this, incidentally.