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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:
mrsbyers · 11/09/2023 14:38

So sorry for your loss , next week marks a year since I was in the same position and lost my lovely Popsie , it gets easier - I miss him so much but honestly I’m relieved he is free from the suffering. Parkinson’s is just an awful disease

Horsemad · 11/09/2023 16:53

Davros · 11/09/2023 14:35

It was a bit by stealth. We sold our lovely family home of 25 years, hence sorting out the finances, but it also made sense to update our wills and POA is an obvious add on. But I actually wanted it done quickly as I can see DH deteriorating mentally, in terms of memory and thinking things are different to reality. It is a mutual POA and DD is an Attorney, but I expect to be using it for DH sooner than for me 🤞

@Davros 💐

Ilikeyoursleeves · 11/09/2023 18:17

Thank you to everyone who sent condolences after my dad died, I hugely appreciate it especially as most of you are going through the same journey or still have raw memories of it all.

@Davros I am really sorry if this thread is grim reading. I hope you can get as much help as you can and respite from your caring duties if possible. Sending you love and strength.

@Valleyofthedollymix and @megmums I hope you're doing OK. I'm trying to sort out the funeral and my sister has crawled out the wood work and is shit stirring already and making ludicrous suggestions. I look forward to after the funeral when I won't need anything to do with her ever again.

I've taken a few weeks off work. I lay on the sofa today and went for a walk. Tomorrow I am meeting the funeral director and clearing my dads room out. I can't bear to keep anything so I will bag up his clothes and take them straight to the charity shop across the road. I'm also leaving his pictures and artwork in the care home as I'd just associate them with him sitting in that room and slowly dying.

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mrsbyers · 11/09/2023 18:46

Have you considered having just a favourite item of clothing made into a memory bear ? I love seeing mine and saying goodnight to him and I have some shirts that I am going to make into a quilt over the winter

Neeko · 11/09/2023 18:50

@Ilikeyoursleeves thinking of you. I've been following this thread but didn't feel I could comment as we are just at the start of our journey with my family member. Be kind to yourself as you come to terms with your loss Flowers

Thanks so much to you and others for sharing your experiences. Whilst difficult reading, I think it's best to be a little prepared for what may be ahead.

Ilikeyoursleeves · 11/09/2023 18:59

@mrsbyers I know many people like that but it's not for me. The smell of my dads clothes would just being back memories of him being old and ill. When I cleared his house out last year I didn't keep any clothes. The smell of his house used to make me 🤢 as it was so old, untouched for years, with the whiff of several old dogs in the carpet but who'd died years before.

What's really helping is making a photo album just now. I'm making one for the funeral wake for folk to look at, it's all photos of my dad when he was well and in my childhood. I've also started jotting down memories for the eulogy and it's very therapeutic to remember him as he was as a younger and healthier man

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Ilikeyoursleeves · 11/09/2023 19:03

@Neeko I hope the journey ahead isn't too difficult. My dad lived with PD for many years and in his own home with the help of carers and myself and it was doable. It was mainly when my mum got worse then died and then he went into a care home not long after when it went downhill health wise. The running about after him though was a PITA. If you can share the load that would be good. I think I mainly found it hard as it was so isolating and I was the only sibling doing anything.

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Davros · 11/09/2023 19:35

@Ilikeyoursleeves I think you've been a great role model on this thread. So obviously caring and involved but certainly not a martyr to it and willing to say you don't like it. I think it will be a relief not to have to deal with your sister, I've had nothing to do with one of mine since our mum died, no one has though. Get through the next bit and then detach from your sister with a clear conscience

Neeko · 11/09/2023 22:05

@Ilikeyoursleeves bless you for taking the time to post that when you are dealing with everything right now. I really appreciate that.

Ilikeyoursleeves · 13/09/2023 17:08

A nice little story to counter all the grimness of this thread...

I'm in the middle of all the funeral arranging but I had a very weird but lovely experience yesterday. I was going out to my car to make the final care home journey to clear out my dads room. My dad liked photography and would take close ups of things. He had a big framed photo of a red admiral butterfly on the wall at his home (the family home before he went to the care home).

I never see red admirals. Very rarely anyway. When I went out to my car yesterday there was a large red admiral butterfly, fluttering around my car in circles, several times. It was so unusual re it going round the car I stopped and said 'hello' and wondered if it was my dad. When I said hello it then fluttered off.

I don't normally believe in all that stuff, but it was both spooky, weird and comforting.


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OhOneOhTwoOhThree · 13/09/2023 17:58

@Ilikeyoursleeves I am glad you are finding comfort in among the grimness. I also wanted to second @Davros's post above. I still have all this to come with my Mum, but going on this journey with you has helped me prepare myself for when I have to do it. Thank you.

twistyizzy · 14/09/2023 07:46

@Ilikeyoursleeves thank you so much for sharing your experience and journey. I have this to come as my DM has had Parkinsons for 8 years now and although it has been fairly mild, at 78 yrs old she is getting noticeabley weaker. This thread has really opened my eyes to what we might be facing and has prompted me to have a difficult conversation with her about what she wants towards end of life. I feel better informed thanks to you and I also feel that I won't be alone facing the inevitable.
Thank you.

Ilikeyoursleeves · 14/09/2023 18:58

@twistyizzy @OhOneOhTwoOhThree I'm glad this post is helping you prepare. Everyone's path is different but the commonality is that PD is grim for anyone and their families. I hope you get as much help as you can and have all the practical things like a POA / DNR etc in place. Oh and funeral plans as my dad always refused to discuss it so I've been working it all out myself, with the help of my aunt and brother at least too.

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Neeko · 19/09/2023 07:34

@Ilikeyoursleeves Hope you are doing okay Flowers

Ilikeyoursleeves · 19/09/2023 07:44

@Neeko that's so weird as I was just thinking about this thread.

It's my dads funeral today. I've spent the week writing his eulogy and doing all that a funeral entails. The weather is terrible and I'm dreading being a wreck in front of everyone.

I'm so exhausted and sad and as much as my dad was a stubborn old git a lot of the time, he was a great man who did so much for me and gave me so many opportunities in life. Writing the eulogy helped me connect to the happier healthier times which was good but also quite sad.

Wish me luck 😢

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MerelyPlaying · 19/09/2023 07:56

It’s a hard day, but it will pass faster than you want - I hope you get some comfort from talking about your dad’s good points and from seeing some old friends/relatives. There’s nearly always someone who turns up, that you weren’t expecting to see. Good luck - the adrenaline of the day will get you through.

twistyizzy · 19/09/2023 07:58

Good luck for today 💐

Mischance · 19/09/2023 09:32

Sending strength for today ...

Ilikeyoursleeves · 19/09/2023 16:47

I got through the funeral. It was a lovely service and I only broke down twice, I was really worried I'd be a wreck throughout it. So many people were messaging me before it which I just had to ignore as it was making me feel worse.

The eulogy went down well and a chuckle was had at the closing song 'Always look on the bright side of life'. That's what happens when you don't plan your own funeral and then your children get to choose your songs 😆 although my dad was a big Monty Python fan so hopefully he would've liked it and had a last laugh.

The weather was better than expected and the heavens cleared when we got to the graveside which was a relief.

Rest easy dad. End of an era x

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Neeko · 19/09/2023 18:58

Sounds like you did your dad proud today @Ilikeyoursleeves. I hope you can take some comfort in that. Xx

OhOneOhTwoOhThree · 19/09/2023 21:12

I’m so glad all went well for you today @Ilikeyoursleeves

Thank you again for this thread. I visited my parents this weekend and we had a really open and honest conversation about my Mum’s end of life wishes when the time comes. Not easy, but got her and Dad thinking about things.

megmums · 20/09/2023 08:00

@Ilikeyoursleeves so glad that the funeral went well and that you can now have some closure after many difficult years.

I do feel that my dad was fortunate in a way to pass away in hospital as the next steps for him would have definitely been a nursing home and further decline. Still miss him so much though, especially now we can put the bad ending behind us and moving back to thinking about the good, happy times.

Sending lots of love to everyone going through the Parkinson’s journey with relatives and friends. Xx

Ilikeyoursleeves · 20/09/2023 08:11

@megmums hope you're doing OK too, have you had your dads funeral yet? And yes although it's sad your dad died, I think it may be a blessing he didn't have to go into a care home to deteriorate further.

Sending hugs x

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megmums · 20/09/2023 08:22

@Ilikeyoursleeves funeral is at the start of October, so over 3 weeks from him passing away. Time is going so slowly but gives us some time to start to process everything I guess. It was the first available date.

Dad didn’t want to go into a care home. I think he had a lucky escape, as upsetting as this all has been.

Ilikeyoursleeves · 20/09/2023 18:13

@megmums wow that's a long time to what for the funeral. My dads was just over a week. Im glad it was quite quick so I can now finally breathe and start to get my head around it all.

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