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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:
bestbefore · 28/07/2023 22:30

So sorry, my fil had Parkinson's and luckily his decline was rather swift - I know that sounds bad but I know it would have been worse for all. Does your dad have a DNR order? Info here www.nhs.uk/conditions/do-not-attempt-cardiopulmonary-resuscitation-dnacpr-decisions/
❤️

LadyGardenersQuestionTime · 28/07/2023 22:53

Echo the sentiments above.

Your father has the right to refuse any medication or treatment he doesn’t want - there should be no sense of “they are keeping him alive even though he wants to die a natural death”. He definitely needs a proper ReSPECT discussion with his gp about what is important to him and what is not; what he does and doesn’t want. Who is deciding he needs antibiotics for example? Is he being given the chance to refuse them?

Care homes are strongly encouraged to convince people to take their medication which some consider a betrayal of their human rights at times.

Pneumonia used to be called the old man’s friend. This is so sad for you and for your father.

Ilikeyoursleeves · 28/07/2023 23:15

@bestbefore when he went into the care home in Feb 2022 he did not agree to having a DNR in place. I thought if it was me I definitely would have one but respected his wishes. But he was nowhere near as bad then as he is now. I am wondering if it would be wise to review his decision and see what he thinks now. It would be beyond me to even think he would want resuscitated and kept alive now.

OP posts:
Ilikeyoursleeves · 28/07/2023 23:18

He also doesn't have a proper RESPECT thing in place I think. We had spoken about doing this then his visits were always taken up with discussing other things / avoiding. I am definitely going to have an open and honest conversation with his GP about it all.

Does the GP have the discussions re end of life wishes or does that have to be NOK / POA? My dad is extremely extremely avoidant of any death discussions (eg he still won't say what his funeral wishes are which actually really annoys me) but I wonder if he would talk to a medic instead of me.

OP posts:
AnnaMagnani · 28/07/2023 23:20

From what you describe he is at the point where medically, any attempt at CPR would be futile.

Some GPs still won't write one if the patient doesn't agree, but it is a medical decision so can be written on medical grounds even if the patient doesn't agree.

If he doesn't have a DNACPR, that would also explain why he is having all the antibiotics and food supplements - his medical team think he really wants to be alive at all costs.

If that isn't what he wants they need to know. They also need to be realistic with you both about what is achievable from here on in.

bestbefore · 28/07/2023 23:32

I think these sort of things are most definitely decided between the person themselves and their doctor. NOK shouldn't been involved, my parents have a dnr in place now - they are very much at peace with life and death and this was presented to be as a fact. All sorted by them.

Choux · 29/07/2023 09:21

When they give him antibiotics do they say what they are? He can refuse them.

Do you have POA for health? If so you should be able to discuss with his GP what the GP thinks is his prognosis and what is appropriate treatment. When my dad's health deteriorated his GP called me to discuss putting a DNR in place (he was also keen to put one in place for mum at the same time even though her Alzheimer's was pretty mild and she has no life threatening health issues which shocked me).

I think the GP prepared the DNR without speaking to my dad. Unfortunately dad died the day it was due to be collected from the GPs so 999 call handler made his care staff attempt CPR even though it was clear dad had died during the night several hours ago.

I have now got more understanding about why the GP suggested my mum have one. I must check whether or not he wrote it up actually.

Choux · 29/07/2023 09:23

I should add both my parents have / had dementia diagnoses although dad was still pretty sharp mentally at the time he died. This may have meant dr didn't need to discuss DNR with dad.

Ilikeyoursleeves · 29/07/2023 09:45

@Choux yes I have POA for both welfare and finances. I've only really used financial POA to pay his bills etc as he still has full capacity. He is still making his own decisions re his health. Eg he was referred to SLT due to his swallowing and speech but the care home then told me he refused it and it's been cancelled now.

He currently has cellulitis in a leg hence antibiotics. I obv don't want him to be in pain but I don't know if him not getting AB's would make the cellulitis painful and how it could worsen. I am waiting his Dr calling me and I am going to have a lot of open and frank conversations. Thank you.

OP posts:
Ilikeyoursleeves · 29/07/2023 09:47

Also I am assuming since he has capacity the Dr will need to discuss DNR with him and wouldn't make that decision for him.

I am hoping he will agree to a DNR, given a few months ago the home told me he was very upset and voiced wanting to end his life.

OP posts:
AnnaMagnani · 29/07/2023 10:09

As a palliative care doctor, if someone is so unwell that there is no chance of them surviving CPR, I explain that we are not going to offer CPR rather than having a starting point of 'what do you want us to do?'

Unfortunately I end up having to mop up a lot of conversations where someone has gone in with 'what do you want us to do?' and got the answer 'CPR!' without having properly explained the situation and that CPR wasn't on offer.

If someone needs to be looked after in a care home, it is very rare for CPR to be appropriate treatment to offer.

Ilikeyoursleeves · 29/07/2023 10:12

@AnnaMagnani that's really helpful thank you. I think I still struggle with thinking myself if things aren't offered I'm making him die and that obv sounds really bad if I have these conversations with him. But then I know if there's no medical / humane reason to keep him alive then it makes complete sense not to do CPR.

OP posts:
crimsonlake · 29/07/2023 11:27

I feel for you as I work in a care home, although not in a caring capacity. I have known several residents with Parkinson's, watching them endure their daily suffering and decline until the end. In my experience as dreadful as it is to say it, care homes are mainly full of residents being kept alive with medication, protein shakes etc with no quality of life.

Ilikeyoursleeves · 29/07/2023 11:38

@crimsonlake yes that's what I think too. They are not nice places to be. When I was last there there was a woman screaming 'HELP ME HELP ME!!!' over and over in the corridor and everyone was ignoring her. Yes she probably had dementia and she may do that all the time but it's distressing for her and for others to see. I asked a carer if she needed help and she just shook her head.

I was there with my kids and sent them to the shop to get grandpa some juice. My eldest later said that he honestly thought grandpa would be dead by the time he got back from the shop he looked that bad. Not great places for kids to be unfortunately and they have declared there's no way they want to be old and in a care home now.

OP posts:
megmums · 29/07/2023 18:06

My dad has had Parkinson’s for 10 years. He is in hospital following a fall which resulted in a broken hip. Hip has healed well but the hospital environment and effects of operation has resulted in severe cognitive decline and recurrent UTIs. He has likely post op delirium and is confused on and off. Doesn’t want to be there. Feels trapped and is acting out of character. It’s heartbreaking to watch. He’s stopped swallowing his tablets and is refusing to eat or drink. Prior to the fall he was very independent and took his health very seriously. I find myself googling end stage Parkinson’s. As I can’t bear to see him suffering. He’s not my dad anymore 😥

Ilikeyoursleeves · 29/07/2023 18:10

@megmums I'm so sorry to hear that. My dad was in a similar situation when he fell nearly two years ago and broke his pelvis. He was talking jibberish in hospital but the delirium settled quickly. He ended up being in hospital for ages while he had physio but also cos it was obvious he couldn't return home and live independently. He fought so hard against this and didn't want to go to a care home at all but in the end there was no other option.

It's a horrible, horrible, hideous road to travel and witness. I feel for you and know exactly how you feel. Sending hugs to you and all the others walking the same path.

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thatsn0tmyname · 29/07/2023 18:15

My dad died 9 years ago. He has dementia with lewy bodies. He basically shut himself down by not eating and drinking. He had one last stay in hospital with a drip and then returned to the care home to die. It took a week. I spent a lot of time grieving whilst he was still alive and his death brought relief to us all. Sending love your way. X

LadyGardenersQuestionTime · 29/07/2023 18:21

There is a big difference between a DNACPR and a ReSPECT process. DNACPR is purely about the decision to attempt to resuscitate someone once they are in cardiac arrest (ie heart not beating, not breathing, on the cusp of death if not dead already).

Whether your DF has one of those or not is neither here nor there - many medics will look at his history and recognise that any attempt will be futile; if they try to resuscitate it is vanishing unlikely to be successful.

ReSPECT is a much broader discussion/documentation of what someones priorities are while they are still alive so medics can make decisions about treatment - at its heart it documents what is important to someone, what their care and treatment preferences are, and where they want the balance between living as long as possible and quality of life/comfort.

If he won't discuss this with you he might with his GP. If he gets taken into hospital round here he won't be discharged without one.

If he won't discuss with a medic, and he has capacity to understand what treatment he's being offered and the consequences of saying yes/no, then in all honesty you are just going to have to live with this. Many people carry on wanting not to die despite not (apparently) having any quality of life at all. We are programmed to want to live come what may.

I'm sorry this is so tough.

megmums · 29/07/2023 18:23

I started to grieve my dad 2 years ago when he started to show some cognitive decline but doctors put him on medication which lessened the symptoms. Another family member had Parkinson’s and he died fairly suddenly following an infection. All anyone wants is for their parent to die with dignity and be free of pain and distress. He is so agitated and distressed most of the time at the moment 😦 I honestly had no idea it would come to this, despite reading up a lot on Parkinson’s.

megmums · 29/07/2023 18:25

On the subject of DNR. Apparently there is one in place for my dad. I don’t know if he made this decision. I suspect the consultants have reviewed his history and current state and decided it’s in his best interest. I didn’t know about the RESPECT thing. I will look into that. Thanks everyone.

SpringboksSocks · 29/07/2023 18:27

I don’t have anything to add but I just want to say that I’m also thinking of you and sending you the warmest wishes. My dad has recently been diagnosed with PD and, horrific as it clearly is, it’s good to have the heads up about what lies ahead. Really hope you and your dad can have some peace x

HelpNeededBeforeIHaveABreakdown · 29/07/2023 18:50

Davros · 28/07/2023 21:23

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

@Davros

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.

Ilikeyoursleeves · 29/07/2023 19:12

@Davros @HelpNeededBeforeIHaveABreakdown

I'm so sorry this is happening to your partners, and when so young too. Sending strength to you both for the difficult road you're on

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Horsemad · 29/07/2023 21:33

My Mum (83) has PD with associated dementia; she was diagnosed about 6 years ago. She has declined quite a lot this year. Had a TIA in May & is still in hospital awaiting discharge either to home with a care package, or to a care home. She is bedridden and has to be hoisted to a chair.

I hate it. She is disappearing in front of our eyes.

This is a horrible limbo and although I will be sad when the inevitable happens, I will also be glad this nightmare is over, for her and for the family.

megmums · 30/07/2023 08:34

@Horsemad really sorry to hear you are going through this. Sounds very similar to the situation with my dad. And now he is stuck in hospital in a cycle of recurrent UTIs which is causing significant delusion. It’s heartbreaking. Parkinson’s is such a cruel disease. 😢

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