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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 · 12/08/2023 14:22

@Alcemeg sorry to read about your dad. The home spoke to me about 'just in case' medicines which sounds like what that article describes. Last week they said he wasn't at that stage but they wanted to let me know what they may do in future. That was before his latest decline into delirium and I don't know how that will pan out. He isn't eating or drinking much and is so frail though.

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Ilikeyoursleeves · 12/08/2023 14:24

@HelpNeededBeforeIHaveABreakdown gosh that all sounds so difficult. My dads situation is grim but at least I know he's in a home and is as safe as can be there, and the practical side isn't landing with me any more.

What age is your DH?

OP posts:
Ilikeyoursleeves · 12/08/2023 14:27

Sorry I just saw you said he's 69

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OhOneOhTwoOhThree · 12/08/2023 14:39

Hello again @Ilikeyoursleeves and sorry to hear about the delirium.

My mum had it for several weeks last year. She was on quite a cocktail of medication - as well as the Parkinson's meds she was taking various painkillers including liquid morphine. She had severe dyskenisia in all four limbs, which was affecting her balance and causing falls and other injuries. She ended up admitted to hospital and slowly weaned off almost all the medication - which stopped the dyskenisia but limited her mobility. The delirium came and went over a month or so. She was already having hallucinations so the delirium was like another way of living in a parallel universe (her hallucinations are generally benign - e.g. she sees a small child sitting on the sofa next to my Dad - rather than frightening). The delirium was really unpleasant, we were often running away or hiding from someone or escaping from prison, but other times we had really lovely conversations in her world - at one point she didn't know who I was. but told me all about her lovely grandsons (my DC) in great detail.

It has come back from time to time, especially when she is going through a change, e.g. every time she goes into a care home to give my Dad some respite but usually passes.

She's now got a formal dementia diagnosis (unclear if PD related or separate) so it's harder to distinguish if it's passing delirium or permanent cognitive impairment.

Thank you for updating your thread and keeping it going. I hope your Dad's delirium passes soon.

Sending love to other posters too, PD is so horrible.

megmums · 12/08/2023 14:44

@Ilikeyoursleeves my dad appears to have post op delirium following his hip fracture. That coupled with Parkinson’s and repeated UTIs, unable to pass urine, means he’s still in hospital 2 months later. He’s agitated a lot of the time and non compliant with taking tablets which is causing further issues. It’s a rollercoaster through hell in my opinion! He talks a lot of gibberish too. It’s heartbreaking.

WhatHaveIFound · 13/08/2023 20:56

So sorry to hear your update @Ilikeyoursleeves. It sounds like we're in a similar position.

My Parkinson's dad also appears to have a post infection delirium and is on week 5 of being in hospital. Sometimes he doesn't even know who we are any more or where he is. He is barely eating (lost loads of weight), though I can still tempt him with some very ripe mango.

I have been used to dad seeing things over the last few years but he's always been aware that they're not really there. Now it's completely different.

As a family we have decided that he will be discharged to a care home, we're just waiting for everything to be put in place.

Ilikeyoursleeves · 13/08/2023 23:23

@WhatHaveIFound sorry to hear that and it sounds quite similar although I think it may be passing for my dad now. I spoke to him earlier on the phone and he made sense and remembered a few things I'd previously told him. The care home said he's been thanking them for looking after him so it sounds like his senses and awareness are coming back.

Getting him to go to a care home and accept he wasn't going back home was an utter nightmare so I hope it goes better for you in locating your dad a new place. The good thing is I now know he's safe there, even if he doesn't really want to be there 😬

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Ilikeyoursleeves · 15/08/2023 20:32

Just posting here for a bit of a personal diary re dates and symptoms and also support from those who know the hell that is PD.

My dad was a bit better over the weekend, I spoke to him briefly on the phone and they said he has been eating and drinking. Today they said he's back refusing food and drink and hasn't had anything today. They said they can't force him as he has capacity. They are getting GP out tomo who is going to assess him and also tell him that not having a DNR isn't really an option now.

They said there's been quite a decline in the last week

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MerelyPlaying · 15/08/2023 22:36

I'm so sorry to hear it. I can only speak from my experience; my dad stopped eating and drinking and just drifted away. I don't think he was in pain, but it wasn't great to see. I can't remember how long it took once he stopped eating; I have blanked that out. Even though you want it to be over, you don't want it to be over.

Wishing you strength, and peace for your dad.

OhOneOhTwoOhThree · 15/08/2023 23:14

Sending you love and strength @Ilikeyoursleeves

megmums · 16/08/2023 11:19

@Ilikeyoursleeves so sorry to hear this. It sounds like we are in the same situation with my dad except he is in hospital following a fall. No longer eating or drinking and sleeping a lot. Not taking medication orally. It’s such an uncertain time 😥

Ilikeyoursleeves · 16/08/2023 13:09

Sorry to hear that @megmums. Yes it's such an uncertain time and a total rollercoaster. Every time my dad gets worse he then gets a bit better again, but then worsens but then has a better day the next day... and so it goes on.

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Sandsational · 16/08/2023 13:25

Hello @Ilikeyoursleeves . Have you seen these resources on Voluntarily Stopping Eating and Drinking (VSED)? It's recent, this is a hot topic at my work as it is gradually becoming recognised as I suppose a legitimate choice. You can find other resources via Google.

https://www.compassionandchoices.org/our-issues/vsed#:~:text=VSED%20is%20when%20a%20mentally,the%20time%20of%20their%20death.

It might help you to have an open conversation with your dad about whether this is now the choice he has made.

Voluntarily Stop Eating and Drinking (VSED)

https://www.compassionandchoices.org/our-issues/vsed#:~:text=VSED%20is%20when%20a%20mentally,the%20time%20of%20their%20death.

Ilikeyoursleeves · 16/08/2023 15:12

@Sandsational thanks for this. I'm not sure I can / should discuss this now as today the GP officially assessed my dad for capacity and stated he no longer has capacity. They have also placed a DNR on his file which I am glad as more recently he would refuse to discuss or say what he wanted (although he didn't want one when he moved in to the home 1.5 years ago, but he was a lot better back then).

Yest he wasn't eating or drinking at all and I convinced myself 'this is it' and spent ages googling what happens when you don't eat / drink in old age. Then today they said he's had a great day with loads of fluids and they are giving him high calorie protein shakes to feed him up.

My first (internal) reaction was 'no, please just let him not eat' but instead I said 'oh that's great!'. I am his POA and now can make health related decisions so I'm wondering if I should say to them to not give him the high calorie drinks and just let him have fluids? But is that really callous?! It's like as soon as he loses capacity I'd be saying stop feeding him?? But he's had a pattern of not wanting to eat and they are now giving him these to prolong his shitty life which frankly nobody wants, including him!

Anyone any advice on what to say to the care home? Argh. 🎢🎢🎢

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OhOneOhTwoOhThree · 16/08/2023 21:19

@Ilikeyoursleeves that sounds really hard. My only advice is to sleep on it. Same for you @megmums. I think you are describing my future. When my Mum is lucid she says she doesn't want to be here any more - has even told her vicar that - so I feel as though if it comes to it we have her permission to let her go as gently as possible.

My mum is - reluctantly - in a care home for two weeks to give my Dad some much needed respite. I would very much like her to stay there, to reduce the pressure on my Dad, but every time he gets to the point of agreeing that he can't cope any more he changes his mind. It's too much for someone in their 80's with their own health problems, but in his mind it would be giving up.

Alcemeg · 18/08/2023 16:52

OP the same happened with my dad. The protein shakes won't really touch the sides for long. X

Choux · 18/08/2023 17:47

I would talk to his GP first and say that you want to have an end of life care plan for him. You and the GP can decide together about what is appropriate care now and what will be appropriate at future stages.

I would be honest with him - 'I don't think his quality of life is very good and I don't see much benefit in trying to extend it as he isn't going to get better. The care home keep trying to get as many calories as possible in him and I am wondering if that is appropriate. What do you think?'

'Also antibiotics - are these appropriate given his medical prognosis? I want him to be as comfortable as possible but I don't see much positive in doing things that will prolong this stage of his life. What do you thing is appropriate?'

There is a link on this web page to the NICE guideline re end of life care.

www.nhs.uk/conditions/end-of-life-care/what-it-involves-and-when-it-starts/#:~:text=If%20you%20are%20approaching%20the,healthcare%20professionals%20have%20given%20you.

Choux · 18/08/2023 17:51

Once you (NOK and POA holder) and his GP have agreed a care plan then you can give it to the care home to carry out. And as you have agreed it with a medic you have no need to worry about them thinking you are being cruel or neglectful to your relative.

Ilikeyoursleeves · 18/08/2023 17:53

@Choux that's really really helpful advice. Thank you ❤️

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Soontobe60 · 18/08/2023 18:03

There’s a difference between withdrawing medical treatment and withholding food and drink. The latter would likely not be agreed to as it would certainly hasten a death.
My stepfather sounds similar to your father. He was taken into hospital the other day because he was having chest pains. The doctor on duty was annoyed he’d been taken in as they would not have treated him as per his care plan. I completely agreed with him!
One of his meds is a statin which reduces cholesterol: the doctor said he’d be better to have that withdrawn but his GP would have to agree. It’s a bloody minefield!

megmums · 18/08/2023 18:56

@choux that is really helpful to me too, thank you. What a minefield all this is. When my dad got diagnosed with Parkinson’s 9 years ago I would never have thought it would involved cognitive decline and other non motor issues which are causing way more issues for my poor dad than motor symptoms. Does anyone know what can be done when a patient is non compliant with meds? I worry my dad is missing part of his regular medication (rivastigmine) and asked if he could have that as patch but doctors seem keen to keep trying to get him to swallow the tablets. Also statins. I know I should trust the doctors but I feel helpless whilst watching my dad deteriorate, in an agitated state, in a hospital bed ☹️

NewspaperTaxis · 19/08/2023 18:25

Hi, @OhOneOhTwoOhThree how did you get a formal diagnosis of dementia? We are trying to get that in a way for our Dad to activate the LPA in Health and Welfare for various things, but the GP surgery say they don't do that any more - not sure who is authorised, then?

Ilikeyoursleeves · 19/08/2023 19:16

Latest update...

I visited my dad today and he looked absolutely awful. He was sitting in the care home lounge so they can keep an eye on him as they said he kept trying to launch himself out his chair in his bedroom. He is strapped in (loosely like a lap seat belt) and he was sitting there drooling horrid brown stuff and stooped over to one side. He was very tired and still not eating much although he readily has apple juice that I gave him.

I asked them to wheel him to his room and spent some time with him there. He's no longer as confused but said 'it's all lies' re him trying to get out his chair and bed. He said he knows he did it but only twice and that's cos he needed the toilet but he can't press his buzzer now as his fine motor skills are non existent.

I've asked the home to let him be in his room for a portion of the day as it's the only place he likes. As his POA I had to declare I know the risks of this re him being alone but I asked them to pop in every 20 mins to check him. He has always hated the lounge and being strapped to a chair and not allowed to leave will be hellish for him. It was really sad to see him in such a dire shitty situation.

I'm going to ask for a PD nurse to review him but not sure what they'd do at this stage? I have a GP call on Wed where I am going to discuss end of life care options too

OP posts:
OhOneOhTwoOhThree · 19/08/2023 19:24

NewspaperTaxis · 19/08/2023 18:25

Hi, @OhOneOhTwoOhThree how did you get a formal diagnosis of dementia? We are trying to get that in a way for our Dad to activate the LPA in Health and Welfare for various things, but the GP surgery say they don't do that any more - not sure who is authorised, then?

@NewspaperTaxis my parents have got really fantastic GPs. The GP referred my Mum to a memory clinic and she had an assessment. He score was sufficiently low for a diagnosis, although (according to my Dad) the consultant said it could either be Parkinson's dementia or another form e.g. Alzheimers. It doesn't really matter - according to my Mum she doesn't have enough room in her brain for anything new as it's already full.

OhOneOhTwoOhThree · 19/08/2023 19:27

Ilikeyoursleeves · 19/08/2023 19:16

Latest update...

I visited my dad today and he looked absolutely awful. He was sitting in the care home lounge so they can keep an eye on him as they said he kept trying to launch himself out his chair in his bedroom. He is strapped in (loosely like a lap seat belt) and he was sitting there drooling horrid brown stuff and stooped over to one side. He was very tired and still not eating much although he readily has apple juice that I gave him.

I asked them to wheel him to his room and spent some time with him there. He's no longer as confused but said 'it's all lies' re him trying to get out his chair and bed. He said he knows he did it but only twice and that's cos he needed the toilet but he can't press his buzzer now as his fine motor skills are non existent.

I've asked the home to let him be in his room for a portion of the day as it's the only place he likes. As his POA I had to declare I know the risks of this re him being alone but I asked them to pop in every 20 mins to check him. He has always hated the lounge and being strapped to a chair and not allowed to leave will be hellish for him. It was really sad to see him in such a dire shitty situation.

I'm going to ask for a PD nurse to review him but not sure what they'd do at this stage? I have a GP call on Wed where I am going to discuss end of life care options too

Gosh that sounds hard @Ilikeyoursleeves. Glad you have got the conversation with GP booked, and hope it goes well.

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