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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:
MerelyPlaying · 19/08/2023 20:13

Oh god I'm really sorry to hear this @Ilikeyoursleeves I know when my dad reached that stage he was in bed all the time; I can't imagine him being put in a chair and wheeled into a lounge. I hope they'll comply with your request to let him stay in his room.

Ilikeyoursleeves · 23/08/2023 17:20

Rant alert!

My dad isn't allowed in his room again as he keeps trying to get out the chair. Although I'm surprised he has any strength to actually even attempt this now. I've asked them to at least let him sleep in his bed during the day if he needs to.

I had a GP call scheduled for today for which I had to cancel work (I'm self employed so I lost fees due to carving out time for the GP window). Then they didn't call!!! They later said it was for next week (which it wasn't!!) and they will call me tomorrow. For which I need to rearrange work again!!


OP posts:
Horsemad · 23/08/2023 20:22

What a pain @Ilikeyoursleeves , very frustrating for you re the surgery not calling.

Where does your Dad have to go if he's not allowed to be in his room? I'm pretty sure they shouldn't be able to refuse him staying in his room?

I am psyching myself for a meeting tomorrow re CHC for my Mum. I know it's notoriously difficult to obtain, so not expecting anything positive.

Ilikeyoursleeves · 23/08/2023 20:25

@Horsemad he has to sit in the lounge full of the other old people who just sit around starting into space and dribbling 😢 He's there so they can 'keep an eye on him' as he keeps trying to get out his chair and falling on the floor. I've asked them to let him sleep in his bed though and not have to try to sleep sitting upright in a chair 😕

Good luck for your meeting tomo 🤞🏻

OP posts:
Horsemad · 23/08/2023 20:33

Thanks @Ilikeyoursleeves .

I think it's awful he can't stay in his room, 😞 although I guess they can't spare a member of staff to sit watching him there.

We're currently on some waiting lists for nursing homes, not looking forward to that bit, I have to say. 😞

Ilikeyoursleeves · 24/08/2023 15:37

I've just returned home from the hardest visit yet. My dad is now in his bed and he only had a T-shirt on and I was so shocked at how thin he looks. He was sleeping and briefly opened his eyes a few times but stayed asleep. He looked so awful I actually said my goodbyes to him and told him I loved him and thanked him for everything he's done for me. 😢

His swallowing is now so bad he couldn't take his medicine this morning. He's not eating and barely having fluids. The GP saw him yest and then again today and she said there's been a huge deterioration in the past 24 hours. She prescribed anticipatory medicines now thankfully and agreed to no more active 'treatment'.

Even though I knew this was coming, and that I want it all to end, it's all so heavy and so hard when it all comes to the end.

OP posts:
Horsemad · 24/08/2023 19:59

@Ilikeyoursleeves Sorry to hear this, it is so hard and even though you think you're mentally preparing for the final part, it must still be difficult to get through when it starts to happen.

Thinking of you and your Dad.

MerelyPlaying · 25/08/2023 11:49

I’m so sorry to hear it. I hope that the next few days will be more peaceful. It’s awful waiting - wanting and not wanting it to end.

megmums · 25/08/2023 13:32

@Ilikeyoursleeves so sorry to read your update. This is such a cruel disease. I’ve re-read the trail. Sounds like your poor dad has had an awful time. Whilst we never want to lose our parents I guess there comes a time when we see their suffering that we know it’s the kindest outcome. That’s how I feel about my dad. Thinking of you both.

Disneyconvert · 25/08/2023 16:00

Mil has parkinsons. Not yet end phase and I dread what's ahead - for her and my dh.

Mil used to rub me up the wrong way. She was very critical of everyone, commenting on my weight a lot (i have a healthy bmi) or criticizing my choices, clothes, parenting. But seeing her now, so frail and vulnerable, I don't care about any of that anymore. She has no strength to criticize anyone. She uses her energy to express her love for us, or to express her wish for things to end. She even asked dh to look into taking her to dignitas, which we did, but mil's partner put up many blocks and we realized he would do everything he could to prevent it.

She also has a colostomy bag, which keeps getting blocked. Everytime the stoma blocks she is in hospital for several days or weeks, talk of whether she will survive an operation, and then it eventually passes. Sometimes i wonder what the stoma is for - to keep her alive, suffering. All the conversations with doctors are about prolonging life as long as possible.

We have the medical ability to give people a more dignified, less painful life and it's just not an option "on the menu" because it's a shorter one. Instead it's choose between Invasive procedure A, Feeding tube B, or Long and painful demise C. So you die a "natural" death (after an artificially prolonged life of course)

So sorry you are going through this. I am reading through these experiences on this thread to try and prepare for what's to come - but i don't think anything can actually prepare us.

Disneyconvert · 25/08/2023 16:05

Just wanted to add to my post that although we never really got on before, seeing mil go through this has given me a great love and respect for her. She's been so amazingly strong and I've seen what a fantastic woman she is.

Mummapenguin20 · 25/08/2023 17:36

Thinking of you @Ilikeyoursleeves the hardest decisions as children we make x

OhOneOhTwoOhThree · 25/08/2023 19:01

@Ilikeyoursleeves hoping that whatever is to come for you and your Dad is as easy as it can be for both of you. And thank you for sharing your journey. You are not alone.

Ilikeyoursleeves · 25/08/2023 20:07

@Disneyconvert sorry to hear about your MIL and I hope this thread hasn't struck the fear of god into you. Everyone's path will be different but the PD is pretty grim no matter what the path is sadly.

OP posts:
Ilikeyoursleeves · 25/08/2023 20:18

I am now having complete dilemmas after everyone stuck their oar in. I know folk mean well but I felt I said my goodbyes to dad yesterday and now he's not very aware of anything, just sleeping all the time so I thought I couldn't go back especially as he looks so awful.

But folk are saying:

'Can you go and stay with him? Can you lie on the floor next to him? I know I couldn't have done anything else!'

'Do you want us to come watch the kids so you can go and visit him?'

'You might want to see him again'

'You could sit by his bed and just do your work on your laptop'

I am not / wasn't particularly close to my dad. I love him, I care about him and get on with him on the main but I am now done seeing to him like I have for years and years and years and years. He has already gone in my eyes. I'm not going to lose 'my best friend' as some folk see their parents. He was always very emotionally distant and I don't think I'll be overwhelmed with grief when he goes. It will be a relief for him but also for me. I want to take my son to football tomorrow and not sit by my dying dads beside as he has already gone. His body just needs to officially close down now.

Is that wrong?!!! I don't want to sit by his bed day and night waiting for his last breath! I need my life back and his to finally end as utterly bad as that sounds 😢😢😢

OP posts:
Horsemad · 25/08/2023 20:36

Just do what feels right for you @Ilikeyoursleeves

rwalker · 25/08/2023 21:16

There no right or wrong personally I didn’t want to see my dad take his last breath

I tucked him up switched the light off and said him good night
i knew the end was coming there’d been a rapid deterioration

like to think he just went in his sleep. He was gone in the morning

thesandwich · 25/08/2023 21:31

Do what is right for you and your own family.

Mischance · 25/08/2023 21:36

My OH died with Parkinsons - blessedly he got pneumonia and I turned down treatment for him (I had PofA) so he could slip away in peace. I was not there when he took his last breath - I had just gone to get ready for bed. You have said your goodbyes - do what is right for you, never mind what others say or think. I suspect that there were those who were puzzled by my decision, but my DDs backed me up and I am at peace with it.

I am sorry that you have had to watch his decline from this wretched illness.

MerelyPlaying · 26/08/2023 10:45

It’s not wrong. I was the same, not close to my dad although I loved him. He wasn’t aware of anyone by the end - even if he’d still been able to hear, he was so deaf that I don’t think he’d have known I was there. I said my goodbyes and there was nothing to be gained by watching him.

Spend time with your son. There’s nothing more you can do for your dad.

OldJeans · 26/08/2023 11:01

OP - sorry to read the update. At this stage you need to do what is right for you.

I missed my mothers death ( due to some complex issues which I will not go into ) after being the one in the family that had been at her bedside when she was very ill. I have, however, no issue with this at all ( even though others think this should be a point of issue) because I was there when she was more alert and to me this mattered the most. This thought helped me through the grieving process.
There is no right or wrong answer- the journey past this point is yours alone.

Ilikeyoursleeves · 27/08/2023 17:52

Latest update-

What a day of complete head fuckery. I went to see my dad this morning with DH. Fully expecting him to be the same as Thursday. It ended up being a visit of bizarreness, dad was pretty aware and lucid at times, but also confused, hallucinating and asking bizarre questions. He still looks absolutely terrible, but opened his eyes and was trying to speak.

He asked for an ice lolly, and then a cup of tea. He had a few sucks of the lolly and a few sips of water. He said everyone is treating him like 'an imbecile' 🙈 so we sat and chatted normally for a while.

I have no idea if he's not as bad as we all thought he was (the GP said on Thursday he'd lost all awareness!!!) or he's experiencing 'terminal lucidity'.

It's totally messing with my head!!

OP posts:
OhOneOhTwoOhThree · 27/08/2023 18:10

Gosh what an emotional rollercoaster @Ilikeyoursleeves.

You've had some excellent advice from other posters after your previous post. All you can do is what works for you and your relationship with your Dad.

Mischance · 27/08/2023 21:40

My OH - who had been mad as a natter for months with hallucinations, paranoid delusions etc. etc. (as well as total physical incapacity) - had a lucid few hours before he died and I was totally thrown. I had made the decision not tot treat his pneumonia so was in effect responsible for him dying and was suddenly confronted with a different man when it was too late - his kidneys would have been failing by then. What a mind fuck .. I was in turmoil. But shortly after that he slipped into unconsciousness. It is very very hard indeed - I do understand.

megmums · 27/08/2023 22:03

Our experience with my dad over the past few months, since his fall, mirrors all this. It’s totally messing with our minds too. What a cruel disease parkinsons is. Some days my dad sleeps all the time, doesn’t talk or eat and isn’t compliant with nursing care. Hallucinations, delirium. Totally talking rubbish most of the time. “Agitated” is the word the nurses use for my dad’s behaviour.
I can’t see an end at the moment. I find myself praying he picks up an infection and is managed to have a peaceful end. Sending hugs to everyone going through this 😢

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