End stage Parkinsons nightmare

[Ilikeyoursleeves]

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.

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@megmums yes it's the uncertainty that's the worst. I'm trying to pretend everything is 'normal' for now so I'm not sitting wondering constantly how things are / will be. What's so confusing is that each day seems to be quite different!! He was barely responsive when I saw him recently then the care home said he was a lot better the next day!

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Ah bollocks it's all so hard! I haven't had Parkinson's to deal with with my parents but cancer and it wasn't even that long a process. 9 months with my mum and then a few months later 4 months with my dad. I could not bear the idea of my mum dying, she was relatively young and so healthy before diagnosis, but I could not bear it by the end, same with my dad. I didn't wish the dead at all but I totally wished the process and the suffering dead. To see them so diminished and not themselves was something I will not forget. When my mum was first diagnosed I remember her crying that she did not want me to see her suffer in the way she had seen people suffer when she worked in hospitals 40 years before. I naively told her things had moved on since then and she would not suffer like them.
How wrong I was.

Don't feel bad, you don't want him to die, you want the long road of suffering to fuck right off and you don't want to see your dad as this helpless thing just eeking out his existence.

Much love to you. I wish the best for this end stage for you. End of life is a total fucker. My friend lost his dad to a sudden heart attack and envies my long goodbye. I cannot think of my parents as much beyond there last few days of suffering even 10 bloody years later. There's no easy way so just be as kind to yourself as you can. Xxx

Just back from seeing my dad who's still hanging on. He was largely asleep but roused when I went into his room and spoke to him. He had about 5 half straws of water, his mouth is now hanging open so he couldn't suck using the straw. I had to put it in his mouth with a bit of water in it holding my finger over the top of it then letting go 😢

Spoke to one of the carers who said she thinks he's deteriorated again and will just slip away. But no one knows when.

The waiting game is so so hard. The sun is shining though and it's roasting so I am going to do something nice tomo on my day off instead of sitting thinking and waiting, waiting, waiting and waiting...

@delphi13 sorry to hear what you went through, it's so awful 😢

I think they will have mouth sponges you can use to keep his mouth from being too dry. Sorry you are going through this x

Just updating for my own records... my dad is still here and not going anywhere fast. Not had fluids for two days now as it just falls back out his mouth. I thought Monday might've been my last visit but I'm going again tomorrow to see him 😩

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I am sorry you are all going through this. When my OH died (he too had PD) it took ages - I could not believe he was still alive after drinking nothing for days on end. It seemed impossible. So - I am sorry to say - it can be a long process, but there came a point where I felt certain he was no longer suffering and his body systems were just slowly shutting down. The nurses were giving him midazolam which is a sedative drug that relieves anxiety and distressing symptoms. It helped him enormously. Thinking of you.

Just wanted to say that I'm so sorry you - and your dad - are still going through this. I can't remember the timescales, that's all a blur for me. This will end and I hope you'll be able to remember your dad as he was, not as he is now.

I feel for you. Our family have gone through this situation too.

It seems so wrong to watch a loved one suffering when all they want is to slip away. Death is inevitable.

Sometimes the care givers promote life when all hope of a tolerable life is gone.

In the past the very elderly were allowed to slip away at home, in familiar surroundings.

My aunt panicked when my uncle who was 91 collapsed, she called the emergency services.

He had cancer which caused huge open welts on his body, was doubly incontinent and had been expressing a desire to die for months.

Even though he had expressed in writing that he was not to be revived in such a situation he was pumped full of antibiotics, given a CT scan and kept alive. He was fed by a tube into his stomach.

He faced months more of pain and suffering until a young doctor accepted that such aggressive medical care was not in his best interests.

It took him six weeks to die.
I would not have let my dog suffer in such a way.

I am frightened now myself of what old age may have to offer me.

I understand all the arguments against euthanasia but I can’t see that promoting life, at all costs, is in the interests of the terminally ill, very elderly, person.

@MmedeGouge omg your poor uncle! I'm actually surprised they gave him all that invasive treatment. My mum had dementia for ages then got cancer but they didn't even really know where it was exactly as they didn't do invasive tests or treatment. We all agreed it was in her best interests to let nature take its course. She died 5 weeks after the tumour was found and I am so glad. If they'd treated her she might still be here 3 years later and also in a care home and suffering.

I saw my dad again today. I have no idea how he is still alive! He looks dead other than his glazed eyes being half open and his mouth agape and breathing. That's 3 days now of no fluids at all, and in this heat too.

Surely he can't go on for much longer?!!!

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Keep strong.
You have my sympathy.

My dad is STILL here.

I really do think he's immortal and is never going to die.

Oh @Ilikeyoursleeves I really feel for you. You want it to be over for his sake as well as yours.

I may have said this before, but I remember my brother ringing me as I was driving to the nursing home and saying “They have just called and it’s not good news”. At that point, the only bad news would have been that he was still alive.

@MerelyPlaying they called the other day and I was all geared up it was 'The Call' but they were only telling me the GP had seen him and things were 'just the same'.

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Op I had to write as I’ve been through exactly this with my DF a year ago (also Parkinson’s) I will never forget seeing him like that with his mouth gaping and his eyes sunken and he looked like a dead person but was still breathing. I hadn’t realised it could take so long to die after no water- but it seems the slower your metabolism, the slower it takes to fade away. Took dad ten days and we just couldn’t believe it. I too started to feel he’d just carry on forever.

I debated whether to see him after he had died - and with good advice on here I did visit, and it was peaceful.

all the best and look after yourself at this time. Feel free to DM

@girlwhowearsglasses I'm so sorry to read you've been through the same. It's hideous. I don't think I could see him when he's actually dead. I did that when my mum died and I don't really want to repeat that. Plus he looks dead already. But is still breathing.

10 days?! Today is day 5 of no fluids. I thought he'd go at day 3.

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I think that was unusual, I hope so.

I can’t find my thread but I did post about whether to see him when he had died. The memory of the last few days was so awful- he did look a lot more peaceful when I saw him. I dunno- it’s all so awful. The only thing that reset me a bit was the funeral and talking to all the people that loved him, and doing a book of photos for the order of service - with good times and laughter.

Just spoke to my dads care home. ‘He’s just the same, he’s really comfortable, had a bed bath this morning and is doing fine’. 😳🙈

Still nothing to drink ‘nil by mouth’. He’s not had any fluids since Monday now.

I asked how long they think this could go on ‘we really don’t know’.

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So sorry for you, when my DH fluids where stopped (cancer) it was 4 days but warned it could be a week 😭

@Ilikeyoursleeves ive been following your thread from the start and have made some updates of my own. My dad sadly passed away on Thursday morning. He was in hospital following a fall and post op infections and delirium/confusion. In the end it was an infection that would not respond to any antibiotics that caused him to pass away. I was with him at the end but that was more luck than anything as it could have taken alot longer. He had last fluids on Tuesday morning, then spent the next 48 hours flitting in and out of consciousness but most of it asleep. He was only given medication to provide relief, not prolong his life. The doctors were clear on that. Many mixed feelings but currently the main feeling is relief for him and for my family that he was able to pass peacefully. I do hope your dad has a peaceful end soon. Parkinson’s is the most cruel disease and had it not been for the infection I know my dad would have ended up in a care home and the Parkinson’s would have continued to deteriorate. Sending lots of love to everyone supporting loved ones with this horrendous condition. Xxxx

@megmums I'm so sorry to read that but I'm also glad your dad (and you) have not had to go through a longer decline and demise. Although it is no doubt very raw with all sorts of emotions for you just now, it sounds like him getting an infection is a blessing in a cruel but kind sort of way.

It sounds like your dad was the same as my dad is now in terms of end of life state. I have absolutely no idea how my dad is still here after 5 days of no fluids though.

So sorry to hear this op, from the sounds of things it sounds like it could be a couple of weeks. My mil was 12 days no food or drink before she died.

@dearanon oh my good god noooo 😩

Not PD but vascular dementia. He was in a care home for 5 years. The last two years he was bedbound, doubly incontinent and couldn't feed himself following Covid. I refused Covid boosters, flu jabs and towards the end antibiotics other than anything pain relief. The care home kept pressing me as to why I would not agree to Covid jabs or flu jabs. I said that as he had no quality of life they were not in his best interests, all they would do would be to prolong his life. A life I knew he would not want to be living. His gp agreed with me.

I knew he was coming to the end, care home disagreed with me, but I told him I loved him, thanked him for my childhood and told him not to fight anymore. He hadn't known me for probably 4 years, not as his daughter anyway. He died a few days later. It was a relic to know he was no longer living this non life.

My vet would not have let my dog go on so long. There should be a way to let our elderly ones go with some dignity.

I hope the end comes peacefully for your dad soon op. Xx

The care home just called and my heart stopped, I really thought it was The Call but they were calling me to say that my dads breathing has suddenly changed and is now very laboured. They said he’s still not needing any anticipatory meds but they are checking him every half hour. Not sure if they were expecting me to say I’d come over but I really don’t want to watch him take his last breaths.

My legs totally went when I got the call and I couldn’t stop shaking and crying, my body had a total physical response. Lucky a friend was with me who is palliative care nurse 🤣🙈😩

Can't be long now and my emotions are all over the place.

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