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Elderly parents

End stage Parkinsons nightmare

251 replies

Ilikeyoursleeves · 28/07/2023 18:35

Hi, not sure what I’m looking for from my post but I don’t know where else to express just how relentless and awful things are just now.

My dad has had Parkinson’s for what seems like forever, I actually can’t remember him being healthy now. He fell a year and a half ago and ended up having to go into a care home. My mum died several years ago after 12 years of dementia so my life has been relentless with looking after ill parents.

I had to clear out my dads house (on my own as my siblings are utterly useless) to sell once he went into the care home and that’s a whole other emotional story. He’s been sitting in his room now for 17 months, doesn’t like interacting with anyone, has never even sat in the garden or left the home in that whole time (I have tried). He has no existence or quality of life. He now cannot walk at all, he can’t get up without the assistance of two carers, he can’t get to the toilet himself, he has to wear incontinence pads, he is so depressed that he has said he no longer wants to be here.

He has recently taken a nose dive in that he is barely eating, not drinking much, having swallowing difficulties, and when I saw him this week he couldn’t even speak. As in he was just whispering. His voice would come and go but he said this was the PD now affecting his voice. He has lost lots of weight, is like a bag of bones withered and slumped in a chair. He has no life, is so tired and it’s just so awful to watch him slowly and so horribly going through this.

I am finding myself googling ‘how long is end stage Parkinsons’ all the time and as bad as it sounds, I hope every day that I get a phone call to say he’s died. But instead I get calls to say how much they are trying to make sure he gets more calories, how they are giving him antibiotics to treat infections etc, how they are basically prolonging his utter hell and torture. I actually want him to die so this hell ends for him but that sounds utterly wrong and taboo to say so I don’t say it.

His Dr is planning on calling me to discuss things as I asked the care home if his recent downturn is now palliative care territory but they wouldn’t say. I’m his POA but he’s still of very sound mind so makes all his own decisions. I feel I need to have an honest and frank conversation with him about his medical help and does he want to keep going. I’m not sure how much I can say to his Dr when he still has capacity. I know he’s in hell though and I want this to end for him, and for me.

If anyone has been in this position it would be great to hear from you. Thanks if you got this far.

😢

OP posts:
Ilikeyoursleeves · 28/08/2023 16:14

@megmums it's utterly torturous isn't it? I cancelled all my work last Friday as I was so upset at how bad he looked on the Thursday, that was the day I said my goodbyes and the day the GP told me he only had days to a week left.

But then I had a completely different experience yesterday when I saw him! And he's been eating yoghurt and having energy drinks today!!!! Bloody hell. So I went back to work today (I'm self employed so can't take time off really or it's zero pay for me) and I've decided to now pretend he's just sitting in the home as usual and stop waiting, waiting, waiting and waiting for the home to call me etc. It was actually good to focus on work and I felt relatively OK today again!

It just goes on and on and on though...

OP posts:
ShadyCat · 28/08/2023 16:48

It could well be the surge which is quite common before people die
They have hours of a day of being lucid

Ilikeyoursleeves · 29/08/2023 18:07

My dad is now back on the nutrition shakes and sitting up in bed! 🤯🤯🤯🤯🤯

The home said 'it's the equivalent of a meal, that will give him lots of energy and keep him going'.

AARRGGHHHHHHHHH

OP posts:
megmums · 29/08/2023 18:10

Oh goodness @Ilikeyoursleeves what a rollercoaster for you and your family. How is he in himself? Is he engaged, does he want to keep on going?

Ilikeyoursleeves · 29/08/2023 18:15

@megmums when I saw him on Sunday he looked horrific, anorexic thin, eyes closed, mouth agape. Then he came round, tried to speak and I could only just make out whispers. But he was quite lucid at times going between that and bizarre hallucinations etc. I asked him if he still liked certain things like relatives calling him on his Alexa and he said yes. He asked for an ice lolly and a cup of tea! So he's engaging with life still.

I'm going to speak to the GP tomo and see what she thinks and I'm going to visit again on Thu. I've had to get my own life back for my sanity so have been working (I cancelled Friday but I'm self employed) for some normality as it doesn't look like he's about to check out any time soon

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Ilikeyoursleeves · 29/08/2023 18:16

I'm also FFS re the nutrition shakes as they said last week they were stopping these? For whose and what benefit is it to 'keep him going'??! But I feel I can't question that, although I might ask GP re the benefits and if he's asking for them or the home are just giving them

OP posts:
fourelementary · 29/08/2023 18:22

I would be querying the shakes as these are prescribed so if he is not getting medication he shouldn’t really be getting these either… what a rollercoaster for you though. I’m so sorry.

Ilikeyoursleeves · 29/08/2023 18:27

@fourelementary he's still getting his PD meds, broken up into tiny pieces or crushed. I asked what would happen if these were stopped and they said they wouldn't do that as 'it would be a very undignified ending' ie his tremor etc would get a lot worse and maybe more.

OP posts:
megmums · 29/08/2023 18:33

@Ilikeyoursleeves my dad wasn’t able /willing? to swallow Parkinson’s medications so they put him on patches. Which apparently isn’t the best thing for him. And they need to get him back on regular tablet medication but can’t as he’s often asleep/drowsy at the times he needs to take it. Interesting that the home are able to crush your dad’s tablets up for him.

Ilikeyoursleeves · 29/08/2023 18:35

@megmums they said they are discussing the PD patches with the GP tomo so not sure it's working that well as his swallowing seems to be hit or miss still

OP posts:
megmums · 29/08/2023 18:37

@Ilikeyoursleeves patches made my dad very drowsy/sleepy but they needed to give him something for the Parkinson’s motor symptoms so had no choice.

megmums · 29/08/2023 18:42

@Ilikeyoursleeves do you mind me asking how long your dad was in hospital prior to being discharged to a nursing home? It’s nearly 12 weeks for my dad and no sign yet of a social worker being assigned / meeting to discuss next steps. Although I think they may trying to establish a new baseline for him - possibly Parkinson’s dementia. Which is difficult as lots of other things going on could be causing the confusion. I would never have known how complex Parkinsons can become in the later stages.

MerelyPlaying · 29/08/2023 18:51

I remember going to visit my dad and they were trying to get him to swallow pills with great difficulty - I didn’t challenge it, but wished I had afterwards because I couldn’t see the point, he was clearly close to the end and it was distressing him. I don’t think patches were around (20 years ago). Hindsight is a wonderful thing, but it was obvious afterwards that he had only a few days left by then.

OP I don’t know what to say - it’s such a roller-coaster.

Ilikeyoursleeves · 29/08/2023 19:35

@megmums my dad fell and broke his pelvis in Oct 2021 which is why he ended up in hospital. He finally moved to his care home at the end of Feb 2022 so he was in hospital for 4 months. It was SUCH a battle. He obv needed to get better physically but it took him forever to admit that he couldn't return home. He fought and fought against going into a care home despite social work, Drs, nurses and physios (and me) all saying he would not be able to live independently due to his home set up (no downstairs loo and he refused to entertain the idea of a commode or moving his bedroom downstairs).

Social work were involved for quite a while before his discharge as we had multiple meetings about how and where to discharge him to. Covid then held things up as he was due to move in Jan but he caught covid (didn't even have a single symptom!) so that delayed it

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Mischance · 29/08/2023 21:07

When we decided not to treat OH's pneumonia and let him die in peace, lots of his drugs were stopped, but the PD nurse said he should stay on some of the PD drugs as he would otherwise become very distressed. He was still on end of life care, but they left him on those drugs that would ease his passing.

Valleyofthedollymix · 30/08/2023 10:13

My father is 88 with late/end stage Parkinsons. So much of this thread is uncannily chiming with me. He went into hospital 10 days ago with aspiration pneumonia despite a ReSPECT form saying that he wanted to remain at home and would have oral antibiotics but not i/v.

Ended up with an i/v, oxygen up his nose, multiple failed attempts to x-ray his chest and a request that we allow an n/g tube. So much for non-invasive.

We got him out and he's at home with my mother and two live-in carers, one of whom is a right Cassandra and just seems to love the drama. I've no idea whether he's dying or not because we've been here so many times he's taken on a sort of immortality.

Further complicated by the fact that he's a fanatical Catholic so we're trying to time last rites and I have earnest conversations with priests about the difference between last rites and anointing of the sick and I'm eye rolling as to me it's all pedantic bunkum.

You wouldn't believe the bad taste gallows humour that my siblings and I are going in for. I think people would be shocked, but this awful prolonged death takes away normal emotions and replaces them with a huge dose of FFS-ness.

Mischance · 30/08/2023 10:29

Valleyofthedollymix - it is so hard. I am sorry he got carted off to hospital for invasive treatments. I was lucky that the medics listened to what I was saying when OH was in this situation and respected my wish for him to stay in his nice homely room in the nursing home with all of us by his side.

But I had PofA for health and welfare as well as for finances and they respected that. It is worth others getting this sorted early on so that all is covered if the situation should arise.

megmums · 30/08/2023 14:09

@Valleyofthedollymix that sounds horrendous and possibly my dad’s decline will be similar, for the forseeable. Although doctors have already told us they have put a DNR in place and will only treat with antibiotics (no ICU). I think I am glad they won’t push for invasive treatment to prolong the end of his life. Although arguably IV antibiotics are. He’s currently unable to be discharged due to “unstable behavior”. I imagine he feels like he is in a prison though hence why he wants to get up and walk! No tv and the same 4 walls for 12 weeks (5 fellow patients constantly changing) would drive anyone up the wall, let alone a Parkinson’s sufferer! 😢
Thoughts with everyone going through this with family members.

Ilikeyoursleeves · 30/08/2023 16:41

@Valleyofthedollymix omg that sounds totally like prolonging the inevitable if he's getting all that invasive treatment. That's awful.

I'm with you on the black humour, that's the stage I'm at now! FFS indeed

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Ilikeyoursleeves · 31/08/2023 15:47

My dad just won't let go! He's been a stubborn old git his whole life and he's determined right to the very end. Even when he's bed bound and the GP says he has days to live... oh no he's not! I've been running after him and my mum and caring / helping for SEVENTEEN years and he's hanging on for dear life. Right to the bitter end. The care home told me with excitement today that he's had some energy drinks and a yoghurt! Yippee! And 'he's getting plenty of fluids so that's brilliant'. Is it?!! FFS. It's my dad asking for it all too which I can't help but feel annoyed about which is totally awful of me but just as the end is in sight, the goal posts move again and IT. JUST. KEEPS. GOING.

FOR.

ALL.

ETERNITY.

I now sound callous but the longer this long drawn out end of life process goes, I start to lose touch with my sadness and I'm mainly getting frustrated now! 😩😩😩

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baffledcoconut · 31/08/2023 20:05

Youve got a safe space here to vent away. It’s so incredibly tough. I’m so sorry- was thinking of you today when I saw my parents and wondered how you were doing.

I think today calls for a massive bar of chocolate and an early night for you. I hope you get some rest.

Ilikeyoursleeves · 31/08/2023 20:08

@baffledcoconut I've just eaten a Ripple and a Mars Bar and will be having crisps later... Shame I don't drink but maybe it's a good thing otherwise I'd be drinking myself into oblivion with all this!

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baffledcoconut · 31/08/2023 21:47

Excellent choice. Don’t start on the Pringles or it’ll just be one tube after another.

Ilikeyoursleeves · 01/09/2023 16:34

Call to the care home today:

'Your dad's comfortable and been great, drinking plenty fluids and we think he's turned a wee corner'

🤯🤯🤯🤯🤯

A week ago his GP said she thought he'd probably die within a week.

Headfuck central!!!!

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megmums · 02/09/2023 19:31

Really feel for you @Ilikeyoursleeves it’s the daily uncertainty that’s a proper messer of the head! I’ve had to try to stop overthinking every little update. Apparently my dad has a bad cough at present. Cue panic re aspiration of food, pneumonia etc.. we just have to leave this all up to fate sadly. Zero control is the worst feeling!

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