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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:
gogomoto · 30/07/2023 08:43

@Ilikeyoursleeves

The gp should be able to advise on a dnr order, in addition it should be possible to request no antibiotics as you do not believe extending life is in their best interest. Then to be frank it's a waiting game. The question how long is one that drs are asked all the time and it's not a simple question ... I do know with my friends parent it was about 6 months after they signed the dnr and no life extending drugs paperwork and it was a chest infection that got her.

WhatHaveIFound · 30/07/2023 09:26

You have my heartfelt sympathy as we're at the same stage with my dad. He's had Parkinson's for 16 years, currently on day 18 in hospital and it's looking like his discharge will be into a care home as mum can no longer cope with him at home, even with carers in place.

I know what you mean about wanting them to die and it all be over. It really is a horrible disease and I've told my DH that if I were to get it, there is no way I will continue life to the point my dad is now. He doesn't want to live any more but there's no DNR in place and I don't know if it's too late as he's now very confused.

megmums · 30/07/2023 10:12

@WhatHaveIFound my dad has a DNR and the consultants made the decision to place that on his file. I don’t know if they have discussed it with him. But the way he feels about life now after being in hospital for 7 weeks following a fall and recurrent UTIs I do think he would agree to it. Apparently doctors can make a decision to place a DNR and it doesn’t need patient or family consent.

MilesAFAH · 30/07/2023 16:29

Not sure I have anything to say, other than I feel you pain and you should not feel guilty - you clearly have the best wishes or your father.

Squirrelsnut · 30/07/2023 16:36

I'm in a very similar position with DM although not Parkinson's. It's torture for everyone.

OhOneOhTwoOhThree · 30/07/2023 18:24

@Ilikeyoursleeves thank you for starting this thread, and to say that you are not alone. My Mum is also is end stage Parkinsons, and has recently also had a dementia diagnosis. She regularly says she no longer wants to live.

She is still at home, being cared for by my 80+ year old Dad who has the patience of a saint. I visited yesterday and she was convinced that Dad was hiding her medication and was being really horrible, which is not her at all. I know it's the disease(s) talking but it's very distressing to see.

She's had a number of hospital stays in the last year and every time that happens Dad says that he realises that he can't cope with her care needs any longer and agrees for both their sakes a care home is the answer, then decides to give it one last go. My biggest fear is something happening to him, as there is no way anyone else could take over from him.

Ilikeyoursleeves · 30/07/2023 18:36

@OhOneOhTwoOhThree

That sounds really tough and where I was at when my mum was alive. She had dementia and would say horrible things to my dad who looked after her day in day out despite him having PD. They ended up both having carers come to the house to see to both their needs. I used to dread if something happened to my dad as my mum would've had to be taken into some emergency care that same day if he wasn't there (I live a two hour round drive away and my siblings literally do nothing, it's 100% me).

My mum then got cancer and died within 5 weeks of diagnosis and I admit I was relieved as she had had dementia for 12 years and was clearly not going to get better. My dad then plateaued for ages and was coping OK as he didn't have to look after mum now. But then he fell, broke his pelvis and it's been a mare ever since. Hospital, covid, trying to find a care home, useless siblings, clearing the house out, selling it, and now watching him languishing in a care home and £4K a month for the pleasure too.

It's truly, truly awful.

If your dad is really struggling I think it's care home time as bad as that option sounds. My dad was utterly resistant to that idea for my mum or for him so I know how hard this is and that he will probably keep wanting to do it all himself. Are social work involved who can help advise? Or a Dr say if it's time your mum went to a home? Could they get more care at home?

OP posts:
WirKindervomBahnhofZoo · 30/07/2023 18:48

Flowers just sending this to you all having been through the exact same thing with my dad last month. He stopped eating and drinking and finally passed away in his sleep. I wasn't there unfortunately but at least I knew he was in a better place after spending the last 18 months bed bound and incontinent with vascular dementia.

OhOneOhTwoOhThree · 30/07/2023 19:55

@Ilikeyoursleeves thank you for replying and so sorry to hear of your experience with your Mum. Like you I'm a few hours from my parents, and have a brother who lives closer but hardly sees them.

Social care is involved but my parents don't have carers - they had some who came in the evening to take Mum up to bed so Dad could have a bit of time to himself but they decided that the carers weren't much help, so stopped having them. Mum has had a couple of spells in a home to give Dad respite but she has hated it. He said to me privately yesterday that he was ready for more, and asked me to raise it in conversation, but she was adamant that Dad should go to the care home for a rest and she'd stay at home (which would be a complete disaster of course).

dnac · 30/07/2023 20:02

It’s very hard to read all of these posts and heartfelt hugs to all who find themselves in similar positions.
It is astonishing that there seem to have been so few medical advances in the treatment of PD. No real treatment breakthroughs for many decades it would seem. More and more people seem to be diagnosed with it or have a family member who has it. Also it seems no real understanding of what the causes are.

mrsbyers · 30/07/2023 20:02

My dad passed away from Parkinson’s last summer after repeated urinary infections eventually led to sepsis and after bombarding him with antibiotics he didn’t recover and us as family along with doctors agreed to start morphine and let him pass , if he had recovered the intention was to ask him what he wanted - I’m 100% certain he would have said that the next infection would be left untreated as he has spent weeks in and out of hospital and that would only continue with shorter and shorter periods at home. His passing was devastating but also came with a huge sense of relief that was hard to reconcile with grief - 10 months on and he’s missed terribly but I’ glad he is out of pain - he was so utterly miserable towards the end you may find your dad feels the same.

Its a horrific disease , for us at least we didn’t get to the totally immobile stage it must be awful for you so sending you a cyber hug

Ilikeyoursleeves · 30/07/2023 21:22

@OhOneOhTwoOhThree maybe formal care would be helpful, my dad had a lot of frustrations with carers but overall they were great. He really liked some who helped him regularly and it gave him social contact too. It gave me peace of mind too as he had a alert button that he could buzz if they needed extra help eg toilet accidents, falls etc and they would normally be answered fairly quickly. He had carers in 4 times a day before he went into the care home

OP posts:
NewspaperTaxis · 30/07/2023 23:17

My late mother had Parkinson's. The end stage can last a long time - I know, because my sister and I had to visit daily to give her drink, which the care homes refused to do. That's Surrey for ya. If you want to finish off a parent with Parkinson's, take them to a Surrey care home - if you raise concerns about the lack of drink, they simply contact the Council's Social Services, and they carry out surveillance on you. They do it by pretending to be your new best friend, and would you like your parent to move back to the family home? No intention of allowing it, of course - but if you say yes, they can make out you're likely to abscond with them, and possibly have you barred.

That said, this covert end-of-life care aka 'ending life care' seemed to being after she'd been in care homes for 2 years - I think that's the optimum, after that they start to bump them off, it seems to me. We were treated as scabs, crossing the picket line to give her drink. In the OP's case, their father hadn't reached the two-year mark though I don't suppose it's cast in stone.

I'm not unsympathetic. The way the State works, if you want your parent to hasten their end, if they're suffering and in pain or discomfort, or lost mental capacity, they force them to carry on until the bitter end. If, however, you want the best for your parent, and they still want to live - as Mum did - well, you may be in for the fight of your lives. It's extraordinary.

The other thing is, if your parent appears to still have mental capacity and can talk a bit, that does make a difference. If they are deemed to have lost mental capacity - a very nebulous term - then all bets are off and my understanding is, they can legally kill them off, esp if the. family did not know to get LPA in Health and Welfare because, frankly speaking, the family then are not the decision makers for their care anyway.

Horsemad · 31/07/2023 12:08

As I left after visiting yesterday I saw a defibrillator on the ward - what's the point of having that, FGS? Why would you want to prolong anybody's suffering by resuscitating them! 🤨

Obviously I'll be sad when the inevitable happens but my Mum isn't going to get better and if I'm honest, I hope she doesn't keep on going for much longer. I think it is totally inhumane, keeping people going like this.

Valleyofthedollymix · 31/07/2023 16:00

OP I'm right there with you. My father has Parkinson's, diagnosed at the age of 85 three years ago, is completely immobile and is now hallucinating all the time. We are paying an enormous amount of money for two live-in carers and that's fine and the best solution, certainly for the moment. My parents barely earnt a penny but have throughout their lives inherited enough money for this (which they won't be passing on as you can imagine how expensive this care is... ).

I sometimes wonder what he's actually going to die of. He doesn't fall over any more because he's bedbound. He doesn't see many people to get an infection. He stopped eating and has lost weight but one of the carers has made it her mission to pump him full of ice cream and fortisip so he's not losing weight.

I know I sound callous and I'm not, I'm just all cried out and onto the gallows phase. I feel that his quality of life is terrible and my mother is both upset by his state and irritated (she's got Alzheimer's which doesn't aid her empathy). She has basically said she wants him gone so she can move into a care home in a different city.

Honestly it's awful. I'm about to go on holiday and I'm convinced it will be pointless as I'll have to rush back.

What we have done and I would advise if all possible:

  1. A DNR from the GP
  2. A discussion with him when lucid to say that he wants to avoid hospital from now on. Crucially he wants oral antibiotics but if he needs an i/v, he won't go into hospital and is prepared for the consequences of that decision.
  3. The word 'comfortable' written all over his medical notes. The state aim now is pain relief rather than 'cures'.


That said when I questioned the wisdom of giving him antibiotics every other week, the GP seemed to accuse me of wanting her to kill him. Which I don't, but every time he has another course he's eroded by it another 10%.
Ashard20 · 31/07/2023 16:21

My mother died five years ago from end stage Parkinson's. The nursing home had advised that when she could no longer swallow, they would just keep her comfortable and let nature take its course. We already had a DNR in place.
She became unable to swallow on a Saturday and died very peacefully two weeks later. For the first week she drifted in and out of sleep, with some startlingly lucid moments, the second she remained mostly unconscious but it was very peaceful and gentle. TBH it was a relief when she reached the point where she could no longer swallow food, as until that point I was still trying to find solutions and prolong the inevitable. The last two weeks were profound and comforting. The battle beforehand was agonising. I was very relieved in the end that we had the DNR and nursing staff who were intuitive and focused on keeping her comfortable. That occasionally meant small sips of fluid or a moist sponge to start with.

RosaSkye · 31/07/2023 16:26

I’m not sure I have anything useful to offer, other than to say that my mum has battled Parkinsons since I was 12 and she was in her 40s. It’s is a horrific condition to witness which essentially robs loved ones of their most basic functions, as you do well know. You’re right to say it’s taboo to admit you hope the end is near, but it’s also really brave to say out loud because the truth is the quality of life is so so poor at the end stages of such neurological conditions.

It’s not quite there yet for my mum, but I know it’s on the horizon. I take so many photos of her holding my children because I know we only have a few years of her being able to left and when I look back over her decline over the past decade ir is terrifying. I’ll be thinking of you x

BinaryDot · 31/07/2023 17:53

Hi OP lots of sympathy. My DM is in a care home, she is in her early 90s and was only diagnosed with PD in her late 80s, so it's hard to say how long she's actually had it. She's been on 'end of life' care a few times (and off it again!) and is now in a settled pattern.

I belive PD affects people differently, my DM's has always been very slow in progressing - she's not mobile, can stand briefly, can feed herself with some assistance. Her voice is very weak and hard to understand. She has a mild level of cognitive impairment which is caused by the PD.

I understand your frustrations. In my experience, we just have to go with the flow in some situations. I make sure DM has good care which addresses what she can do now, there's no point me thinking about what she used to be like or what she would once have thought of what she is like now. When she first went into the care home, she could do 'activities' and was mobile, and I wasted some time trying to make that happen again before I realised I have to be where she is now, not then.

The care home should be on top of meds, including any pain meds so your DF is not in discomfort, ditto any other healthcare such as skin care, padding etc. PD patients will get to a point where they can't swallow - my DM has thickener in all her drinks because liquids are the most likely to cause choking / aspiration but I take her sweet drinks and things as treats. I have bought / arranged for care home to buy various things for my DM's comfort, and that's all I can do. When our parents come to the end, whenever that is, they will go - and we can just try and make them comfortable along the way. People can live with PD a long time, we have to go with that I think, not worrying about the future but concentrating on what's happening now.

I have had a lot of dialogue with the care home, GP and consultant so we are all agreed that DM does not go to hospital at any stage (she's scared of hospital) unless there is some truly unmanageable pain or sickness (v. unlikely) - they have all the end of life meds at the home should they be needed and nursing staff could come in. She has her PD meds because they make daily life better and she would have any other temporary meds which would make her more comfortable e.g for bowels. She wouldn't have any active treatment which could cause or prolong suffering. I think you ought to be able to have honest and regular conversations with all the people involved about your DF's treatment. My DM is not on any active life-preserving treatment and today she said 'I'm surprised I'm still alive!' before wolfing down another Jaffa Cake.

Ilikeyoursleeves · 31/07/2023 18:51

@NewspaperTaxis sorry to read your post, that all sounds immensely difficult 😞

OP posts:
Ilikeyoursleeves · 31/07/2023 18:57

@Valleyofthedollymix I have had similar thoughts, re what will he actually end up dying of as he can't move so won't fall and they give him antibiotics at the sign of any illness. It's like they are giving him a torturous long and slow ending and there's no choice.

I'm still waiting for his GP to call me. I thought they would today but didn't so I am going to call the home tomo and ask for a meeting to be arranged so we can all discuss his care. I'm going to discuss with dad too obv although all he can do is whisper and I can barely make him out now and he obv can't write either. It's all just so torturous.

OP posts:
Ilikeyoursleeves · 12/08/2023 09:48

Update for anyone who's following this thread...

My dad got better a few weeks ago, found his voice again and was eating and drinking a bit more. I tried to speak to him about what his wishes are if he declines and might need to go to a hospital etc. I also brought up does he still not want a DNR given his current level of health. He managed to swerve answering anything at all so I just left it.

However in the past few days he's had a steep decline again and now sounds like he has delirium. He's been talking jibberish to the staff (eg saying he is off out with his wife- my mum, who died 3 years ago), he keeps trying to get out his chair so sounds very agitated and he thinks he can walk unaided (he can't). They have started him on oral antibiotics in case it's a UTI but I've said (with agreement from family) that we don't want him to go to a hospital if he declines further, but keep him as safe and as comfortable as possible in the care home.

Has anyone faced delirium in their older relative and how long did it last?? I'm wondering if it could possibly be a TIA too.

I hate this rollercoaster 😞

OP posts:
NewspaperTaxis · 12/08/2023 11:22

My Dad gets delirium whenever it's a UTI - how long it takes for it to be solved depends on which antibiotics it takes, sometimes it needs a second lot of stronger stuff - Co-Amoxiclav I think it's called. But it does clear up. He doesn't have Parkinson's, mind.

It's odd this thread given my experience of elderly care - honestly, take him to Surrey, many a care home will be happy to finish him off, it seems they put the elderly on covert end-of-life care without consulting the family, my late mother had Parkinson's and my sister and I had to visit daily to give her drink, all appeals fell on deaf ears. The Council actively involved in her anticipated demise behind the scenes. Same goes for Epsom General Hospital - I can't fault the A&E at all, they are great, but God help you if your relative gets into the AMU ward, it got very sinister and they tried to bar us taking him out even though his stats were okay, we had to produce a copy of his LPA which we had on our person, while the matron went through it angrily with a fine tooth comb for any loophole she could use against us. Got her mates to surround us, one of them filming it - just awful. Temperatures on the ward of 80 degree F even at 10pm, really stuffy. This was back in April/May just before the King's Coronation.

Bizarrely, we had Dad on that very ward about three years ago and it was fine, I even saw a thank you card I'd written to them with a picture of him having a pint still pinned on their noticeboard, though it makes you wonder how many of those thank you cards are actually recent, given that one was was so old! Maybe he just wasn't on their hit list then, being a bit more compost (!) mentis.

If you want to hasten end of life for a parent, take them to Surrey! That's my advice. I don't know if care settings get kickbacks for knocking them off - that happened before in hospitals re the now illegal Liverpool Care Pathway - but I wouldn't at all be surprised.

Davros · 12/08/2023 12:30

HelpNeededBeforeIHaveABreakdown
"Just to say I am in the same boat. DH is 69 and diagnosed with Parkinson's many years ago. The last 5 years have been a sharper decline particularly with mobility (uses a walker in and out of the house now, had to stop driving). I also suspect dementia is starting. I am younger and still work and we have no external carers yet. I have started the process to get this in place."
Sorry, I only just saw this, I've been planning to come back to this thread but couldn't face it until now. I am only a couple of years younger than DH, this could go on for years Sad I have some health problems and I also provided care for years for DS who has severe autism, I still oversee everything to do with him. I'm not doing it again, I've been very clear on that. In the meantime, we share a home and with 20 year old DD too. Although carers come in, it's our home and it can't be built and organised around DH only but he's a way off going into care. All of which we have to pay for. Having had very serious financial problems a few years ago, somewhat related to the PD as he couldn't work as much and had a massive pay cut, we are now financially comfortable and it looks like it will all go on care

rwalker · 12/08/2023 12:36

Have a chat with the doctor
my dad had dementia in the end a wonderful paramedic who came to the house asked if we wanted him taken into hospital to be treated we said no doctor put him on end of life basically pain relief only

Alcemeg · 12/08/2023 12:42

So sorry you're going through this, OP (and all the other PPs).

My dad didn't have Alzheimer's, but followed that classic pattern of a fall at home - then hospital and delirium - then care home and what seemed to be a rapid decline into some kind of dementia, although it was hard to tell. He still recognised us, but generally talked gibberish with some lucid moments.

We were lucky that some helpful staff explained the DNR (e.g. CPR pointless in very frail elderly, whose ribs would be broken) and the RESPECT form, and somehow we got things in place in a situation that was entirely new and alien to all of us.

What you describe as the difficulty swallowing, lack of interest in food, whispering, etc, is what indicated his final decline. Of course it might work out differently in your dad's case, but I looked into it a lot at the time and it seems that when vital organs (including the brain) start to fail, so do appetite and ability to eat/drink or process any kind of nutritional intake, which does them more harm than good (e.g. accumulation of fluid on lungs).

It was at this point that the care home introduced end-of-life meds, and he died within a few days. I wasn't able to be there, but I hope that he was floating on a reasonably pleasant cloud of painless sedation. (Who knows, really...)

https://www.mariecurie.org.uk/professionals/palliative-care-knowledge-zone/symptom-control/anticipatory-medicines

Anticipatory medicines | Information for professionals

Medicines can be prescribed in advance so that if someone develops symptoms they have the medicines ready when they need them.

https://www.mariecurie.org.uk/professionals/palliative-care-knowledge-zone/symptom-control/anticipatory-medicines

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