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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:
notsuchafrugalkitty · 26/09/2023 19:11

OP I could have written your first post. And so many of the others. I'm sorry that your dad died but fully understand all your feelings and the rollercoaster surrounding it. After two years in a home we've now been told that my dad is being moved to palliative care. I wouldn't wish Parkinson's on my worst enemy. I hope you can find the peace I'm hoping to find afterwards. Big hugs xx

Ilikeyoursleeves · 26/09/2023 19:34

@notsuchafrugalkitty sorry to hear you're going through the same thing. It's awful. Do you have POA etc in place? A good GP and care home? I hope the path ahead for you is as best it can be given it can never be good really. It's such a rollercoaster.

Others said to me it would come to an end, it never felt like it would. But it did. Which is hard but absolutely for the best for the person with PD and the relatives. Sending you strength x

OP posts:
notsuchafrugalkitty · 26/09/2023 20:13

Thank you. Everything has been in place for a while now. He's been in the nursing home just over two years and we can't fault the care he's been given. If I could have given him a pill to end it I'd have fine it. Even with the dementia I know he hates what little existence he has left and while it's heartbreaking, I can't help but hope it's all over soon.

Ilikeyoursleeves · 27/09/2023 15:52

I just came home to an absolutely beautiful bouquet of flowers, from my the staff at my dads care home. They really are stunning. So thoughtful of them, it didn't even cross my mind that they would do that.


OP posts:
Horsemad · 28/09/2023 13:26

That was a lovely gesture from the care home @Ilikeyoursleeves

Intercrapper · 28/09/2023 15:51

Rest in peace @Ilikeyoursleeves Dad.

Ilikeyoursleeves · 29/12/2023 22:26

Hi all, just checking in and bumping this thread back up again. I got a lovely private message from someone on this thread to see how I was doing this Christmas so I wanted to resurrect the thread in case anyone else might find the support helpful.

First Christmas without my dad but I'm doing OK. I don't wish he was here as the state he was in would not be good for anyone to be here in. Which I'm aware many of your family members are in, if you're on this thread. I miss the healthy dad he once was but that was years and years ago and I still can't quite remember when he was healthy, the PD had been there for so long.

Please keep this thread going if anyone would find it helpful and thanks again for all the support and advice I got this summer. Thoughts to all going through the same ❤️

OP posts:
Davros · 30/12/2023 10:27

How lovely to hear from you Xmas Smile
Our situation has improved in many ways but, of course, there are also disadvantages. DH has accepted his disability much more and stopped being reckless, E.G. deciding to go out on his own randomly or not taking his meds on time. We now have a good set up of carers in the morning and have found two wonderful people. They will also take him out if he wants to visit camera shops or other things I don't want to do. Of course it costs a fortune and there is often someone here when DD and I would rather not. Our privacy has certainly been impacted but the benefits are worth it. I don't know how long we can go on forking out but, for now, it's working. I assume his condition will deteriorate but how and what it will mean is hard to say. Our relationship is quite arms length but I'm happy I've got some separation and independence. All those years we did things "his way" and now the power has totally shifted. It means I have to do EVERYTHING in terms of admin, house management, dealing with everything to do with him bar actually getting him dressed, washed etc. The admin to do with him is massive but I suppose it will reduce once everything is in place.

Horsemad · 30/12/2023 10:56

Hi @Ilikeyoursleeves good to hear you're doing ok. My Mum died in November, so first Christmas without her for us also. Like you, I wouldn't wish for her to be back with us - not as she was, as it was too sad to watch.

Sounds like you have a decent routine in place, @Davros
Sending best wishes to you. 💐

WhatHaveIFound · 30/12/2023 11:23

It's good to hear you're doing ok @Ilikeyoursleeves. Thanks for updating us all.

We continue on our Parkinson's journey with dad now content in the care home. There's been an increase in delusions & sleep recently but I know he's being well looked after. Next target is his birthday in March!

OhOneOhTwoOhThree · 30/12/2023 12:25

Hi all, sorry for your loss @Horsemad and thank you for reviving this thread @Ilikeyoursleeves.

Still trundling on here - Mum has had a dementia diagnosis to go with the Parkinson's - the memory clinic said there was no point trying to decide if it was Parkinson's related or not. She then had a fall in late November and broke her pelvis in two places and has been in hospital ever since. Increasingly confused, which is usually the case when she's not in her normal environment so it's not clear if it's further cognitive decline or delirium (which she's had previously and bounced back from).

Plan A was to discharge her to a rehab hub to free up her bed, but the latest is that she will now stay in hospital until she can mobilise well enough to go home (expected to be a few more weeks, not least as she will need a bed downstairs to start with). Dad is really pleased at the idea of getting her home, I am less so as he's got his own health problems to manage. I am doing what I can to help from a distance.

Ilikeyoursleeves · 30/12/2023 13:26

@OhOneOhTwoOhThree that sounds really hard and what happened with my dad, he broke his pelvis too and expected to recover and get back home but his mobility never really improved. He had no downstairs loo and refused to make the dining room into a bedroom or use a commode so the only option was a care home in the end. It was a massive battle to persuade him that was the only option.

@WhatHaveIFound glad the care home is a contented place for your dad, that's all we can hope for really.

@Horsemad sorry for your loss, hope you're doing OK and getting used to the new normal.

@Davros that sounds really hard but also better in many ways, glad you can step back a little and have found great carers

OP posts:
MerelyPlaying · 30/12/2023 14:09

I'm sorry to hear that so many of you are still struggling, good to hear that you are now in a better place @Ilikeyoursleeves and thank you for updating. I miss my parents tremendously at Christmas, but I am able to think of the happy times, and yet again today as I heard from a friend about problems with her elderly father, I breathed a sigh of relief that this is now all over for me. You can only go through it once. I wish courage and strength to all those who are battling with funding, care and medical treatment. Here's hoping that 2024 may bring better treatment or even a cure for this horrible disease. Cherish the good times when you can.

megmums · 30/12/2023 18:00

@Ilikeyoursleeves thank you for posting your update. My dad died with Parkinson’s around the same time as yours and this thread was a great support during that time. Miss him immensely but given what he was like in hospital following the fall and the quick deterioration, I know he is in a better place now. Still sad though and I can’t get those months out of my mind. See friends’ with parents of a similar age in relatively good health. Parkinson’s is a truly cruel disease. Sending love and strength to everyone going through similar times with their loved ones.

Ilikeyoursleeves · 30/12/2023 19:19

@megmums yes I know what you mean, having friends whose parents are in great health, mobile, living and enjoying life. It doesn't really seem fair how some get struck down with horrible illnesses but I guess it's just random and bad luck.

I found myself getting sad not just because both my parents are no longer around, but that I (or my kids, their grandchildren) never really got to have a particularly close relationship with them as illness dominated their lives. My mum had dementia the whole of my kids lives and my dad had PD for many many years too.

OP posts:
Ilikeyoursleeves · 30/12/2023 19:22

@MerelyPlaying I agree though too that when I hear friends worries of what lies ahead for them and caring for their parents I am so relieved that I don't need to do any of that now as both my parents and both in laws are no longer with us. I def wouldn't want to go through that again

OP posts:
Davros · 30/12/2023 21:26

I don't want to belittle others' experiences but I wish it were a parent who was ill with Parkinson's and not my DH

Ilikeyoursleeves · 30/12/2023 22:45

@Davros I totally get you. It must be another level of hell when it's your partner who's ill. Most of us can have a boundary from a parent like going back home between visits / calls / care etc. You will have a different type of relationship with your partner too and we don't really expect to have to care for partners on that level but it's probably not massively unexpected with elderly parents.

Sending you hugs xxx

OP posts:
Davros · 30/12/2023 23:49

@Ilikeyoursleeves 😢 thanks for the kind words

Ilikeyoursleeves · 30/12/2023 23:57

@Davros ❤️

OP posts:
OhOneOhTwoOhThree · 03/01/2024 21:01

@Davros I can see what my Mum's Parkinson's is doing to my Dad's health and wellbeing but I can only imagine how it feels to be caring for a partner.

DH and I visited my Mum today. Dad had a phonecall late last night to say she was being moved from the main trauma hospital in their city to a smaller hospital. The new hospital had plenty of empty beds as they hadn't been doing surgery over Christmas, so there was just my Mum and one other lady in the ward today. She was - understandably - confused after the late night one and was hallucinating a bit, but every now and then snapped into normality for a while. Her voice has become really quiet and it can be hard to hear her. She seemed to be well looked after and getting plenty of attention and although she's on an ortho ward they were very aware of her Parkinson's.

katherinebhana · 04/01/2024 17:38

My husband first symptoms of Parkinson’s occurred during covid, but was diagnosed in 2021 when he was 61 years. He was on Levodopa- not crazy about it! he was also on Sifrol and rotigotine not crazy about any of it either, The Levodopa did very little to help him. The medical team did even less. His decline was rapid and devastating. He had a stooped posture, tremors, muscle stiffness and even slow movements. I was a master Gardener and love herbs! This Parkinson’s took my life from me, I was no longer able to work in my garden anymore because I was a full time caregiver for my husband. We stopped most of his Parkinson’s medications due to severe side effects and I started him on Ayurvedic treatments from Natural Herbs Centre naturalherbscentre. com , the treatment has made a very huge difference for him. His symptoms including body weakness, tremors and slurred speech disappeared after few months on the treatment. He is getting active again since starting this treatment, he is able to walk and able to ride his treadmill again.. This Ayurvedic treatment is a miracle!! I can personally vouch for these remedy but you would probably need to decide what works best for you

Mischance · 04/01/2024 18:43

My late OH had Parkinsons. The drugs your OH has been given are a bit outdated I think. My OH had none of those. My brother also has it and he is on the same drugs as my OH.

Carpediem15 · 05/01/2024 17:54

Mischance · 04/01/2024 18:43

My late OH had Parkinsons. The drugs your OH has been given are a bit outdated I think. My OH had none of those. My brother also has it and he is on the same drugs as my OH.

Would you please tell me what drugs your brother is on. My husband is on levodopa and rivastigmine (for dementia) and honestly he is just getting worse instead of better.

Davros · 14/01/2024 15:06

@Mischance I would also be interested to know what drugs your OH is on. My DH has been on Levadopa for some years (Dx 10 years ago at 55) and other drugs etc. He goes to the Parkinson's clinic at the National Hospital in Queen Square which is supposed to be the best centre of expertise in the UK, if not Europe. Are they really prescribing outdated medication? He spent several weeks in there last March/April due to Psychosis so has had some very close observation. I always thought he was getting some of the best treatment and advice available

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