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.

😢

[AnnoyingPopUp]

Not Parkinsons, but cancer for my late mum. Her chemotherapy drugs had caused her to have a stroke, with permanent aphasia as the result, and she did not want to be alive any more. In the end she simply stopped eating (deliberately). As she was in a busy NHS ward none of the staff noticed for a while ... when they did, they brought their concerns to me, and I had a frank talk with mum, who made it clear that she fully understood the inevitable consequences of starving herself. I told her that, if she wanted to live, we might have to look at a feeding tube, but that if she understood the consequences of not eating, I understood her reasons and I would not go against her. 5 days later she died.

I'm so sorry OP, it's so rubbish. I would definitely have a chat with your dad and ask him what he wants - does he want antibiotics to be withheld, for example? - and tell him that you love him and respect his choice no matter how painful it may be.

[MissDollyMix]

Gentle unmumsnetty hugs for you OP. I have also been here with my father. I understand exactly the situation you are describing. My father stopped eating and drinking in the end. We think this stopped his medication working and he then slipped away pretty quickly. The doctors said it was a peaceful death. After all his suffering it was a merciful release. I’m not sure if any of that helps but very happy to chat more if you want.

[TheLurpackYears]

I haven't, but do have experience of a family member with PD. It's a brutal disease, you have my sympathy. The fb group Caregivers of Parkinson's Disease is a really good place to go to ask the scariest questions and generally have a good vent.
From a PD perspective, you are in an unusual position where your dad is still cognitively functioning, but the apathy and loss of the sense of smell must be making eating enough very difficult.

[Lifeinlists]

It's an awful place to be for both of you OP, so I hope you can get a clearer understanding of what the prognosis/ options are.

You can say/ask whatever you like from your point of view to the doctor. The doctor will decide if it breaches confidentiality and will tell you, but you'd hope the interests of your dad would be in everyone's mind. And since he's 'of sound mind' he should be encouraged to express his views.

[VeryQuaintIrene]

My dad died of Parkinson's back in May. Like yours, mine was lucid pretty much until the last week or so and had similar physical symptoms to yours. He also expressed a wish to be done with life several months before he died but was kept as alive as possible. However, he suddenly took a turn for the worse about 10 days before he died, and moved into palliative care territory when they just eased his symptoms and let him go and I've heard of other situations where the sudden turn happens as well. It's incredibly sad to see and I feel for you.

[Alloveragain3]

I'm so sorry OP, it sounds incredibly tough for you and I hear what you're saying about them prolonging his life when his quality of life is lacking.

My Dad has Parkinsons and Parkinsons dementia and it's just a horrendous disease. It's taken so much from him and from our whole family.

[AngelasEyelash]

My heart goes out to you OP. My DM died of Parkinson's 4 years ago. She was immobile, incontinent, had dementia & couldn't talk for her last few months. She'd broken her hip a year previously and the replace,ent had failed, so we knew then she would never be mobile again. I had POA and I knew I didn't want her to die in hospital - she passed away in her nursing home. I'm sorry, it's a horrible, horrible illness

[caringcarer]

My Gran had Parkinson's through most of my childhood. My Mum cared for her at our house for 8 or 9 years but then she started to get mini strokes. I recall hearing her GP tell my Mum she also had Lewi Body dementia. In the end she had to go into a care home because my Dad died and my Mum couldn't lift her to get to the toilet or in and out of bed herself without Dad to help her as Mum had arthritis. Gran was in a care home for about 6 years she couldn't eat or drink properly and constantly dribbled. I think it was her medication. In the last year she could barely speak and didn't even recognise my Mum who went to see her for 2 hours everyday. I think that was Lewi Body dementia though. They gave gran these calorific drinks to try to stop her losing weight. In the end she was on a drip to keep her hydrated. She was depressed for years and years. In the end she died of a massive stroke not the Parkinson's. I feel for you because I saw what Mum went through she was always worried and suffered from exhaustion from either caring for her or travelling to visit her. Mum would never leave Gran to go on holiday with my dad either. She always told Dad they would go after Gran had passed away but Dad died first and Gran went on and on.

[twistyizzy]

Had to reply just as support. My mum has Parkinsons, as did her sister and their Dad. It is such a horrible disease although thankfully my Mum has it in a fairly mild form. She is late 70s and still mobile etc but weight loss is a real issue.
Just a virtual hug and hand hold, we have the worst yet to come I fear but just wanted to say that you are not alone.

[IbizaToTheNorfolkBroads]

Many, many hugs @Ilikeyoursleeves. Your op resonated loud and clear with me. You've described the last few years of my dad's life, except DM was(and is) still alive.
It was a horrible, horrible decline, leaving dad with no quality of life. He was 6'2" and 17 stone when well, and a bag of bones 10 years later. He died of pneumonia in the end, too weak to fight it. The end stage was a dreadful, drawn out 3 years. It'll be 30 years this year, but I can picture him sitting miserably in his room at his Sue Ryder home clear as day.

I totally understand your hopes for a phone call to say your dad's died. There is no shame in wishing an end to someone's suffering, especially if they have expressed the same. When the call came for us, my main feeling was one of relief. As a family, we had some closure and could move on. We'd actually been grieving for years.

Best of luck, best of strength going forward OP.

[MerelyPlaying]

I'm so sorry for what you (and your dad) are going through. My father died from Parkinson's Disease 20 years ago. He went from lucid but a bit feeble, to talking absolute gibberish within a few weeks (I had not known until then, that end-stage Parkinsons often includes dementia). He was in a care home where he was not particularly well cared for. Once he gave up eating and drinking it was a matter of weeks.

I do feel for you. I remember thinking that if it were not for the pain it would cause the rest of my family, I would gladly have put a pillow over his face and taken the consequences. I can only offer hugs - you will get through this, and in time you will remember your dad as he used to be, but this is a bloody awful time.

You say that he still has capacity - could you discuss this with him, perhaps with his doctor or the staff? It's difficult because it's not a case of withdrawing treatment - they won't withdraw food and drink - but I wonder if you could discuss a palliative care regime that might ease his journey.

[BeautyGoesToBenidorm]

Oh love, this resonates so much, except my dad had Huntington's disease. His illness felt like it'd lasted a hundred years, it was so cruel.

I welled up reading your OP. It's so awful, isn't it? I so wish I had answers for you, or something to make you feel even a tiny bit better, but please just know that this MN stranger is thinking of you and your dad.

[eatdrinkandbemerry]

I hope this doesn't come across wrong but we wouldn't let our pets suffer like that so why is there no opt out of life option for our elderly or seriously ill 😩.
It's cruel for the patient and cruel for the family to watch them decline.
My own mum has already said she will be taking a lot of pills if she feels she's had enough (heart and liver failure is her problem) and I honestly hope she does what she wants to do!

[ittakes2]

My dear lovely f'n'l had both severe dementia and parkinsons ... and just as we thought his quality of life could not be worse ... it always got much worse. Unfortunately, I do not really have any advice for you except to say how you are feeling is very normal.

[Ilikeyoursleeves]

Thank you all who’ve replied and so sorry to read you’ve all faced similar journeys or are still on them. It’s really awful and no we wouldn’t treat our pets like this. It feels really inhumane and why would you try to keep someone going when they are so clearly suffering and will never get better??? I’m starting to even feel disappointed now when the care home tell me if he’s had something to eat today or that they’ve started him on antibiotics etc. When he’s not doing well I gear myself into thinking ‘the end is finally in sight’ and then things stabilise and I then think ‘is this going to go on for several YEARS like this??’ and I then feel guilty for wishing my dads life away.

It’s such an emotional rollercoaster. My mum also died of cancer (and dementia) this time of year and I remember her needing to be given sips of juice at the end and looking frankly hideous. The same is happening with my dad but at least I knew my mum was definitely dying whereas this could be a rollercoaster for years with my dad and I just don’t know how I can cope with that!

[Davros]

DH has Parkinson's, he's had it for 10 years and is only 65. He has the signs of early Lewi Body Dementia. At the moment I have no options other than to have him at home and cobble together formal care, all of which we have to pay for. It's awful, I don't know how long it will be like this as he is relatively young. There's a lot more to our story but I can't face going into it right now

[thesandwich]

Hello op, does your dad have a RESPECT form completed? Completed by medical staff talking to your df… recording his wishes re treatment.

[thesandwich]

https://www.resus.org.uk/respect/respect-healthcare-professionals

[parietal]

my aunt had parkinsons with lewy body dementia. after one hospital visit for IV antibiotics which kept her alive but with no quality of life, the family & doctor & carehome all agreed that she would have no more antibiotics to prolong things. She could not manage full conversations by that point but when the doctor asked if she wanted to go back to the hospital she said a definite NO.

[TooBrightInHere]

It's a horrendous situation. There is no compassion around dying :(
I'm sorry for what you are both going through x

[TheOldLadyOfThreadneedleStreet]

Hi, my DD died of Parkinsons and Dementia 2 years ago, it was awful. He had Parkinsons from late 60s and battled so long keeping going, but the last 18 months were bad. He got hallucinations and massive mobility problems, in and out of hospital with a twisted bowel (apparently common in Parkinsons) and just hated his decline. He was losing his ability to recognise us at the end and his voice had reduced to a whisper, he was a bag of bones too. He had a stroke during a hospital stay and then just faded away as was semi conscious at best so not eating. I really empathise with your feelings, I think they are quite normal. Best of luck, it is so hard, look after yourself too.

[Cortinaweb]

I couldn’t read your post without acknowledging. My darling dad went through similar, and also developed dementia. I still don’t have the words to express the horror of watching what he went through. My heart goes out to you now and to all those with Parkinsons and their families.

[Bonfire23]

I get it, it makes me so cross
My cat went cuddled in my arms before he was in pain or suffering within seconds and peacefully
My mum spent 12hrs dying (early onset dementia) with me watching her, and she wasn't going to get better so why couldn't she be helped? I get that human life is precious but something needs to be done, if the person is never going to get better or have a quality of life

We didn't have POA but she didn't have capacity and we were very strong in no life extending treatment. She actually died from pneumonia induced sepsis
The doctor rang my dad to say they were going to give antibiotics and he said "absolutely not, what for? She wants to die, she always made it clear in her wishes, and she's not going to recover from dementia"

[Intercrapper]

My sympathies OP, this must be a huge strain.

[AnnaMagnani]

While your Dad has capacity to make decisions about his medical care - do you think he is actually making decisions to keep having antibiotics or is he just going along with what the doctor/care home say because he's tired and thinks they know best?

It's not unusual to find people really don't realise they have a choice. And that care homes and medical staff are so scared families will complain that they keep going and going long after the patient and family really wish they had given up.

Given the doctor wants to discuss his care with you, now is a good time to say 'DDad always tells me he wants this to be over, he has not been happy for a long time' and ask for a palliative care referral.

We had POA for my FIL and everyone was v clear he was not to have any more treatment. Then we got a call late one night to say his bloods were off and he should go to hospital - we were 'WTF is he having bloods done for!' and it turned out the GP, who knew full well our wishes had been doing bloods every week because he just couldn't stop himself. At least we stopped the admission and it let us know that it was the last few days.