Late stage Parkinson’s Disease

[gluenotsoup]

Hi,
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

hopeful bump ..

Bless you and your FIL. It's awful I know. Has he got the right balance of medication from the consultant? My experience of hospitals and parkinsons is a nightmare tbh. It is so important that the medication is given regularly at the right times etc. Maybe try and rule out any other things like urine infection that could be making things worse. I'm not an expert but my mum had it and it does sound like late stages. Keeping him well looked after and comfortable as well as keeping him out of hospital would be my advice but I know how difficult it is to get the hospital discharge and subsequent care package in place. 💐

Ah, thank you for the reply.
He has had medicines just reviewed, no infections such as a UTI. He’s in hospital, but I can’t see how he can come out at the moment, and if he does then the hospital are suggesting a care home. But, I can see that he will get as much care as he needs there.
If it’s ok to ask - what are we likely to expect next?
Its an awful disease, I’m sorry you’ve been through this too 💐

I'll be honest, my mum ended up in a nursing home. She needed 24 hour care in the end. She had care at home for a long time and we did our best to keep her at home but it just wasn't possible in the end. I was pregnant and there were other reasons too. She ended up being bed bound but was cared for well. I went to see her regularly (before Covid thank god). The day before she died she was very relaxed and peaceful. Sorry you are going through this.

Also not longer after going into the home she qualified for continuing health care funding after assessment and we just paid a £50 a month upgrade fee for a better room.

This sounds like my stepfather - hes also been diagnosed with Lewy Body dementia - that often hopes hand in hand Parkinson's. He’s in a care home now. @ByeByeMr we applied for CHC funding and they said he doesn’t meet the criteria! Bastards!

I will add that it may take a while to get a bed for him in a care home as they are as rarer as hen’s teeth at the moment. He will be assessed by the discharge team and move into care on a discharge to assess basis. Then a meeting will be held to determine the best place for him - home or in care. During that time he may also have a capacity assessment made. My stepfather has had a DOLS assessment made as no one has POA and he's no got capacity.

This happened to my father.Adjusting his medication helped with the delusions. He lived the last couple of years in a nursing home. It was hard when he went in, but it turned out to be the best for him. He got care from professionals and when he was having a bad day, my Mum didn’t have to try to deal with him on her own.

For my father, the end was that he had a stroke that killed him. Came unexpectedly. He was in such a poor state by that time that while it was sad, it was also the best end that he could get.

Thanks for the support everyone. There’s a lot to think about, we don’t have POA and hope he might be eligible for continuing healthcare but I know it’s rarely given. There is no way he can manage at home, but I am just so shocked at how quickly he has deteriorated both mentally and physically, it’s frightening for everyone.

My lovely mil had Parkinson's. She was doing great for ages but had a bad turn after a horrific uti that landed her in hospital and things turned bad so suddenly and dramatically it was unbelievable. We tried to keep her at home but it was impossible and she ended up in a nursing home. She was only in her late sixties so it was awful for poor DH who had to make that decision . She was constantly distressed over things that were a figment of her imagination it was very hard to see her like that. At one stage she accused the woman in the room next door of having an affair with a man across the corridor (this definitely wasn't happening). She passed away about four or five years after her initial bad turn

I'll type a bit but I've posted on this subject so often on this site you'd as well be to type my username into Google along with Mumsnet and see what comes up. Not having LPA or POA is a big oversight and you can't get it now if he's delusional - but is that official? He needs to have mental capacity - if his delusions are down to a UTI or medication - the agonists did it for Mum, they made her crazy sounding many years before she really 'lost capacity' once she was off those she was okay - like I say if they're temporary you might still be able to get LPA in Health and Welfare - and in Finance too - but you'd be lucky.

Parkinson's is a very variable illness, it's not the same for everyone. My Mum went into a care home after maybe 10 years after we felt Dad was letting her down a bit, we were also strong armed a bit by the hospital. You're looking at well over a grand a week for most care homes, in Surrey going up to 1.5K a week. She spent maybe 6 years in various care homes but you're not expected to last that long.

NHS Free Continuing Healthcare is made very hard to get because they don't want to fork out money, irrespective of requirements. We got it fast-tracked for us - sadly, after that we found it very very hard to get care homes to give her drink, and I later found it hard not to believe - putting it discreetly - that it really isn't the Liverpool Care Pathway in disguise, namely that they're given three months to live with little chance offered of letting them get better anyway! A very sinister situation imo. Makes sense though - they don't give away freebies unless they get something in return, and even if a person is self-funding, their dragged-on survival costs the State money in pensions and prescriptions.

Protein shakes worked well on Mum to build her strength up. She went on for another three and a half years after she went on free NHS Continuing Healthcare, but she was taken off it after eight or so months, probably because I took her previous care home to the local press and the local authorities (Surrey) wanted revenge.

My ex-FIL (who I am very close to) has Parkinson's. He was diagnosed in Oct 2019, but it was no surprise, he was already showing many symptoms.

He managed to live alone until April 2020 - he declined very rapidly, and the move from his independence to needing care was difficult. Thus although he had lots of medication, he wasn't taking it, he wasn't looking after himself, but was (understandably) unwilling to hand over responsibility.

Lock down didn't help obviously, and after a spell in hospital he moved into a nursing home. He has done OK there, up and down quite considerably.

I can visit him and he barely know I'm there, and sleep through the whole visit, or he might be very agitated yet unable to articulate what's bothering him. At other times (like this w/e) he can be on really good form and enjoy being taken out to dinner. Or I take him out to concerts.

I do believe his diagnosis coinciding with lockdown was detrimental to him. There's just no way a consultant can do their assessment via zoom. Also the care home was on its knees so it was very much a case of them taking care of the most needy while many residents just sat in the lounge. Visiting someone through a window is horrible.

He is currently content and living a reasonable life, but is dependent on people visiting him to engage his mind. The care home just don't have the staff.

My MIL was diagnosed with it 7 years ago but has probably had it for nearly 10 years , she has really deteriorated and it's awful to see. She's been at stage 4 since last winter but has got worse , incontinent , hardly any mobility. She has no life, as awful as it sounds I would rather she died sooner rather than later as on a good day she has said to me she wants to die. The loss of dignity has been very hard. Does anyone know what happens when you're at stage 4?

Urgh. All confirming what we think. It’s not so much an oversight that we don’t have POA, more that he was very closed to that type of conversation, feeling that it was losing control. The result is that it’s probably too late. He has times when he’s lucid and you can have a few sentences of conversation, just difficult to understand, but then he goes off at tangents with things he believes or voices he hears. For example, he thinks he’s on a plane mostly, or that his family have been killed. Or that he’s about to be deported.
A care home is being suggested as respite, but don’t know what happens at the end of that, or it’s more like a trial period. He definitely can’t live alone any longer. It’s the decline in his quality of life that’s the worst thing, and he looks very thin and frail.
I also think lockdown didn’t help because all his appointments were cancelled, with the occasional telephone consultation only, which was pointless when you think he can barely speak anymore.

It's all relative. I mean, we were able, should have been able to keep Mum at home but Dad was acting up, he/we didn't know it would cost a grand a week in nursing home fees (don't think a care home will take your Dad, if medication is needed it's more expensive nursing homes, not all of the former are the latter of course) nor did we know that once you're in you can't easily get them out again back to the family home and the Council being in cahoots with many care homes, they'll be able to stop it easily if you don't have LPA or POA and frankly even if you do - THEY are the decision maker legally, not you.

For all that, in your dad's situation I can't see any spouse looking after him or keeping it together so in the instance where the alternative is him being found dead on the floor in a week's time, a care home is the lesser of the two evils. As for respite, well, no Power of Attorney and they have the say in whether he leaves or not to go back home. Not saying it certainly will be like that but....

Parents go thru a funny bugger phase - the very time you need them to grant you LPA in anything, is the very time they won't want to do it.

His wife, my mil, died years ago, and while he’s coped well he now needs care. It’s not really an option to live with us, as we have a severely disabled dd, who I’m already a full time carer for. I didn’t even know there was a difference between care and nursing homes, so I’ll have to read about that now too🤦🏻‍♀️

Well, not much to read up on, it's just if you get a list of care homes, not all may take him - IF he needs 'nursing care'. Tbf getting some meds three times a day does not necessarily mean he needs a 'nursing' home but with the other things going on, he might. So if you get a list of care homes, doesn't mean all of them will be able to take your father in law, the choice may be narrower than you think.

If you visit him, see if you can get drink down him, so long as that is no danger to him - get him on a straw, that can help.
In all the years Mum had Parkinson's, I never heard of the 'Stage 4' stuff. But she died in late 2017. I think they update the lingo or change it a bit.

He uses a sippy cup, can’t get out of bed by himself, too weak to go to the loo, some incontinence, very difficult to understand any speech, very delusional, low blood pressure, sleeps a lot, problem solving joined up thinking gone, continuing weight loss….
tbh when I list it it sounds like he needs to stay in hospital not go to any type of home 😢

My FIL has had periods of those symptoms, but then rallies and has a period of lucidity and being more physically strong.

That's okay but how long have you had Parkinson's, @bonnoechismar ? It sounds like the OP's relative is further along the line.

Now, checks might be run to see your father in law does not have some urinary tract infection which can send the elderly nuts (not a medical turn) yet can be sorted with a dose of antibiotics, and prevented with daily cranberry juice.

I am sorry to say that given what you've described if he is put in a care home I can't see them making him last long though an incentive to keep him alive may be his money, because if he is self-funding they profit from that, and the overcharge on self-funders subsidises council-funded residents. See my other thread on my father's oedema - things turned sinister on his brief stay in a ward at Epsom General Hospital.

What always bugged me about the way they treated my parents was we knew they were okay really but the hospital and Surrey health as a whole always are into deliberate 'managed decline' - they want to move them on to the next stage and every hospital visit seems designed to ensure just that.