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What's the point? It's just cruel

Gwendy1

Registered User
Feb 9, 2016
414
Glasgow
I know, Red. The day dad got admitted to hospital in Jan, the out of hours Gp said his chest was fine. ..3 hours later, ambulance etc, dad on ventilator! Sigh. :-/ ! Good your dad seems more comfortable tonight. I wish you peace. Xx


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Red66

Registered User
Feb 29, 2016
363
Update. Had meeting earlier with Consultant at Dad's nursing home. (Dad getting discharged today, literally waiting for ambulance back to NH as i write!) She asked our thoughts if the aspiration pneumonia happened again what would we want and said that she had her opinion. I was very very very shocked to find that her opinion was the same as ours. Not to be sent the hospital again and not to have Iv fluids or antibiotics. She also said that if his lungs fill with fluid again she said that they can give medication to help with breathing. I asked was this to start of end of life and she no not initially but if it doesn't help then those drugs will be prescribed 'just in case' . I just can't believe we're here. So unbelievably sad. It's my parents 50th anniversary 20/8 and i wonder if they will get there. Weirdly Mum said that he won't die till November, don't know why.

I feel guilty. It is the outcome I hoped for and it's a shell of the former man, not my Dad, he died in November 2015 when he was sectioned. I know that this is for the best, but still feel rubbish. I have a 3 year old and 22 month old they keep you busy but you just can't switch off. Funny saying that, a Pwd has done just that.

Hoping he is back at the home later when kids in bed, but I have no doubt that he will be completely distressed or asleep from being distressed. But just being able to see him and seeing him comfortable makes me feel OK, and I won't have that soon. Its just awful.
 

Gwendy1

Registered User
Feb 9, 2016
414
Glasgow
I still struggle with this, Red. Your situation is like a mirror image of mine with dad in January. I made the same decision as you back then, and I know in my heart it was the right one- no more hospitals and IV meds. Palliative care, really, for an illness that can't be cured. The swallowing difficulties and the aspiration are horrendous to watch..God only knows how frightening it must be to experience. :-(... I still question my decision, even though it was made on medical advice- but I never doubt my love for my dad, and my dearest wish is that he doesn't suffer anymore. I'll fight for that, for dad, as I know you will too for yours. ❤


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Evie5831

Registered User
Nov 7, 2015
108
Update. Had meeting earlier with Consultant at Dad's nursing home. (Dad getting discharged today, literally waiting for ambulance back to NH as i write!) She asked our thoughts if the aspiration pneumonia happened again what would we want and said that she had her opinion. I was very very very shocked to find that her opinion was the same as ours. Not to be sent the hospital again and not to have Iv fluids or antibiotics. She also said that if his lungs fill with fluid again she said that they can give medication to help with breathing. I asked was this to start of end of life and she no not initially but if it doesn't help then those drugs will be prescribed 'just in case' . I just can't believe we're here. So unbelievably sad. It's my parents 50th anniversary 20/8 and i wonder if they will get there. Weirdly Mum said that he won't die till November, don't know why.

I feel guilty. It is the outcome I hoped for and it's a shell of the former man, not my Dad, he died in November 2015 when he was sectioned. I know that this is for the best, but still feel rubbish. I have a 3 year old and 22 month old they keep you busy but you just can't switch off. Funny saying that, a Pwd has done just that.

Hoping he is back at the home later when kids in bed, but I have no doubt that he will be completely distressed or asleep from being distressed. But just being able to see him and seeing him comfortable makes me feel OK, and I won't have that soon. Its just awful.
I really feel your pain Red 66, the guilt is awful to live with especially when you have to fight for the right of your dad to have the peaceful end he deserves. Stay strong and know you have a lot of support around for you and that the decisions you are making are totally the right ones based on love for your dad.
 

Red66

Registered User
Feb 29, 2016
363
New update. I don't believe this visit dad yesterday and the unit manager at the nursing home has said if dad has another episode whereby he aspirates and is choking then they will call ambulance to take him to hospital. That's not the conversation I had with consultant who said that dad is better off in his home. I thought I had this box ticked, now I am having to sort yet again and things like this take so long to fix.
 

lemonjuice

Registered User
Jun 15, 2016
1,534
England
New update. I don't believe this visit dad yesterday and the unit manager at the nursing home has said if dad has another episode whereby he aspirates and is choking then they will call ambulance to take him to hospital. That's not the conversation I had with consultant who said that dad is better off in his home. I thought I had this box ticked, now I am having to sort yet again and things like this take so long to fix.
My heart goes out to you Red66.
Not quite sure what the exact 'order' is (I have problems getting the Home to let me see anything) but after 2 hospital visits where nothing could be done for my mother Dr and NH have agreed no more hospital. Even so the next 'event' they sent for the paramedics and I had to rush over there to ensure she wasn't transferred to hospital. Fortunately the Staff Nurse reassured me the paramedics had been shown the forms and there would be no transfer.

I queried why paramedics had been sent for and was informed by the owner of the NH that this was standard practice, to show they were basically not assisting someone's death and incur comeback on the Home.
The NH of course has all the facilities to cope with end of life nursing, which is possibly why if your father is in an ordinary Care Home they have to send your father to hospital.

That was one of my main concerns in my mother's original placement, as I know that inevitably many dementia sufferers need nursing care for the last few years of their life and although another Home was much nicer, this one was a NH and the other one told me being only a Care Home they would have to send mother to hospital for emergencies.

Someone once talked about the roller-coaster of dementia and that it certainly is.
 
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Red66

Registered User
Feb 29, 2016
363
Hi lemonjuice, thanks for the response. Dad is in an EMI NH, and I did think they would call an an ambulance to literally just cover their own back. Not sure why they would need to do that as the Consultant has done that for them to say don't send him to hospital. Red tape. This NH also deals with end of life care too, just crazy.
 

lemonjuice

Registered User
Jun 15, 2016
1,534
England
Hi lemonjuice, thanks for the response. Dad is in an EMI NH, and I did think they would call an an ambulance to literally just cover their own back. Not sure why they would need to do that as the Consultant has done that for them to say don't send him to hospital. Red tape. This NH also deals with end of life care too, just crazy.
Just make sure there are some forms to show the paramedics that your father is not to be transferred to hospital.

Red tape indeed. But we have a new 'jobsworth' coroner in my area who is hot on ensuring there is no collusion to let someone die - even in the case of a 108 year old! Apparently, as I read somewhere. Drs are no longer allowed to put 'old age' on a death certificate. There has to be a health reason. Honestly why do they think our LOs are in nursing Homes- because in most cases they're at end of life.:confused: Even if that end of life isn't quick in coming!
 

Red66

Registered User
Feb 29, 2016
363
Waiting for a call off the Community Matron, I have been informed that the Dnar Apc means that he shouldn't be going to hospital via the Consultants medical secretary (Consultant emailed her and she read it out). Very confused as I thought that it means once your dead, don't bring back to life ie purple form. Surely there is a different form that should be placed in Dads file to say not to be sent to hospital. Anyone any ideas what colour that is so i can speak if it??? Thanks
 
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Red66

Registered User
Feb 29, 2016
363
Spoke with Community Matron who confirmed that he wouldn't be going to hospital now. She said that if Dad was too weak whereby the oral antibiotics were not working after given a chance then sadly end of life drugs would be administered. This is just awful feel like I am sending him to the slaughter yet I know it's the right thing to do. When he could speak in January in a very brief lucid moment he said 'i wish i could just kill myself'. Then when I tried to speak to him he was gone again into his own world. I hate all this I really do.
 

Evie5831

Registered User
Nov 7, 2015
108
Spoke with Community Matron who confirmed that he wouldn't be going to hospital now. She said that if Dad was too weak whereby the oral antibiotics were not working after given a chance then sadly end of life drugs would be administered. This is just awful feel like I am sending him to the slaughter yet I know it's the right thing to do. When he could speak in January in a very brief lucid moment he said 'i wish i could just kill myself'. Then when I tried to speak to him he was gone again into his own world. I hate all this I really do.
So much pain for you and your family Red. Life should not be like this, you have the consultant's agreement and you still have to fight everyone.
 

Red66

Registered User
Feb 29, 2016
363
Well, unit manager at the NH apologised tonight!! She said that if Dad is sick again with aspiration pneumonia they will have meds already prescribed for his breathing and to calm him down and if they don't work then they will get the doctor out who will then decide what's next. She didn't say it but I gather that if nothing works then the just in case pack will come into play. Went to visit dad earlier and he isn't well. Complete blank stare with mouth wide open with fluid coming up off his chest again. He has just finished Iv antibiotics and then a week of oral antibiotics. He doesn't have a temperature yet, just feel like I am waiting for the call, that dreaded call and the anxiety is choking me.
 

Evie5831

Registered User
Nov 7, 2015
108
Well, unit manager at the NH apologised tonight!! She said that if Dad is sick again with aspiration pneumonia they will have meds already prescribed for his breathing and to calm him down and if they don't work then they will get the doctor out who will then decide what's next. She didn't say it but I gather that if nothing works then the just in case pack will come into play. Went to visit dad earlier and he isn't well. Complete blank stare with mouth wide open with fluid coming up off his chest again. He has just finished Iv antibiotics and then a week of oral antibiotics. He doesn't have a temperature yet, just feel like I am waiting for the call, that dreaded call and the anxiety is choking me.
Is there anyone that can be on standby to take the calls apart from you Red, if only for a couple of nights, you need to get a good sleep to recharge your batteries a bit. My heart goes out to you
 

Red66

Registered User
Feb 29, 2016
363
Hi Evie, sadly its only me although good advice. My brother lives 200 miles away and I don't want mum to take the call as she is no good relaying information back to me when she is shock. I suppose I could put my phone on my husband's side of the bed!! Will try that tonight.
 

Carrie1984

Registered User
Jun 18, 2016
9
Sorry to hear about the heartbreaking situation with your Dad, Red .
We have the same situation with my grandad now. No life left in his eyes now, he's just 'there' but not with us if you know what I mean. Sometimes he will open his eyes and look very scared. I hope we get the peaceful passing they deserve X
 

Red66

Registered User
Feb 29, 2016
363
Been to see dad twice today. He was awful, really deteriorated since yesterday and was too weak to even speak. The doctor was there the first time I went and has prescribed medication to thin the secretions from dads lungs, which I think is a bad idea as he will just breathe them back in. The Matron agrees with me but has said they will have to monitor him. Also the canula site where he had the Iv fluids last week is now swollen and inflamed, looks like it's getting infected. The doctor said she is giving a topical cream rather than more antibiotics as he will have the runs if he has even more antibiotics in his system. He needs antibiotics, you don't need to be a doctor to see that. Things get worse by the hour never mind the day. Frustrating dealing with doctors at times!!
 

Red66

Registered User
Feb 29, 2016
363
Sorry to hear about the heartbreaking situation with your Dad, Red .
We have the same situation with my grandad now. No life left in his eyes now, he's just 'there' but not with us if you know what I mean. Sometimes he will open his eyes and look very scared. I hope we get the peaceful passing they deserve X
I know what you mean Carrie about just being 'there' I just hope when they are in that world they don't realise. So sad to witness. Memories are so precious.
 

EnglishMark

Registered User
Feb 7, 2016
2
Exactly what iam thinking

My father is 89 years old and appears to be entering the final stages of this horrible disease. When i saw him tonight lying there in his care home bed getting more skeletal by the day, my mother ever present by his bed side almost force feeding him, i too thought what is the point. He is obviously in pain but cant express his feelings. My mother is suffering both mentally and physically, iam, my brother is , grandchildren too .....why cant he be allowed to go. He has no quality of life whatsover just pain.
 

Red66

Registered User
Feb 29, 2016
363
EnglishMark, it's a sad world in which we live when we watch our Fathers suffer and nothing we can do can fix it. My Dad is 73 years young, he retired at 65 like most men but has missed out on the golden years. Stuck in a bed in a nappy. No dignity, i wish him peace, yet to reach peace they have to suffer more and more and we are their witnesses. I read that death is as natural as birth. I wish it felt like that. Sorry for morbid rant. Everyone on TP has come together because of a cruel illness and I am so grateful for the support we give each other. Extended family and friends don't understand they sympathise and hear your pain, but they don't feel it. Not that I wish you guys to feel it obviously. Sorry. Just feeling really down this morning. Roller-coaster for us children too I guess, the worst ride ever that I just want to get off
 

Gwendy1

Registered User
Feb 9, 2016
414
Glasgow
It is overwhelming, really, coping with this stage. My dad has stabilised again, every infection takes another piece of him away. I was looking at pics of him outside in the sun on his birthday, beginning of June...he is unrecognisable in a matter of weeks, so much frailer. I guess we're all trying to stay strong, while feeling totally powerless. Thinking of you all. Xxx


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