care when should it stop big question to you all this is based on brother and his wife she as been in deteriorating health since 2014

[pauluk60]

lots of peeps are in this situation as we have found out his Margaret loved life her house garden hols to all places of world then slowly struck down with so many things its hard to name all but brother used to look after her built ramps to get in and out of house take in garden but that got to much for her then into hospital for 3 months out back home with careers calling calling and costing 2000 grand a month well this went on for 4 months or so then in and out of hospital again in again till they said to him she requires care home well they sent him here there and everywhere but ended up across the road at 5000 grand a month sharp breadth of air well this starts off the unbelievable after 3 days in care she falls back to hospital for a month sent back to care home the weekend came and care home phoning him panicking your wife not well can you believe it he had to tell them to phone ambulance whilst in hospital told him they expected her to die within hours so started getting all whats required for that event in house next day sister on ward phones to tell him their thinking of transferring her back to home WHAT did you say he asked and she repeated it so what am i saying is how long should care go on its killing him the way its working now and poor Margaret still ill and now with dementia how far should we be going is my question to you all i do not want thati am sorry if i am upsetting anyone

[sylvi]

My heart bleeds for your brother darling and i wish i had an answer for him i really do.Hugs from me. xx

[popsmith1874]

Very difficult situation for all involved and no easy decisions xxx

[pauluk60 in reply to popsmith1874]

thanks fo reply pop your right

[Mmrr]

I'm sorry to hear this Paul, a very difficult situation.

[pauluk60 in reply to Mmrr]

yep its brother hes 80 and they keep saying she wont last the night then they are moving back to home but hes lived it for four years and still cant rest hes on pins just seems to much

[Soreknees2016]

Such a difficult and heartbreaking situation for all concerned, and why I have often thought about doing a ‘living will’ in case I should ever get to that stage. I am sympathetic to the cause of the ‘Dignity in Dying’ campaign, and while I appreciate that it is fraught with ethical and legal dilemmas, we don’t let animals suffer in this way, so it’s unfair to let humans suffer like this. I hope that Margaret finds some peace before too long, and you and your family too.

[pauluk60 in reply to Soreknees2016]

much appreciated sknees all what you say is right just cant see the point of keeping someone alive for more suffering they need to change whatever to take the the pain of both patience and career away

[nablur]

So sad. Hugs. 😓

[sjhewitt42]

Hi Paul, this really is the worst situation imaginable for your brother and poor Margaret. If it is her time to say goodbye then I hope it’s as comfortable and pain free as possible. Perhaps your brother will look back and think it was better for her to come home and be comfortable in her own surroundings with the person she loves. Very hard work being a carer and I send much love to you and your extended family. Sarah xxx

[pauluk60 in reply to sjhewitt42]

thanks for reply sarah your right but its to much for him hes 80 and its 24 hour care with her

[sjhewitt42 in reply to pauluk60]

I understand. Scary to think we may have this to come. Best wishes xx

[pauluk60 in reply to sjhewitt42]

hopefully not seeing Margret and Pete is soul destroying all that can be done as been done she literally dies then back again he as told me at least 3 times doctors ready/given up to pull plug but back she comes but still very very ill cant say anymore hes at loss to much to bear for him but at least he is strong

[nomoreheels]

I'm so very sorry for your brother Paul, it's such a difficult situation, helped somewhat by your brother accepting of help. I do have some experience of a similar situation but unable to share here I'm afraid due to it being an unlocked post but I do wonder if your brother's & sister in law's GP has been informed of the turn of events? If not maybe he should as the next step.

Some nursing/care homes have specific rooms for those who are unlikely to respond to treatment, it's called end of life care. Staff are trained specifically, this explains nhs.uk/conditions/end-of-li...

[pauluk60 in reply to nomoreheels]

thanks for reply shes in a care home but had two falls so ended up hospital docs there a lots of times theres no stone been left upturned he couldnt do anymore but this is over 4 years now and its telling on him and hes 80

[nomoreheels in reply to pauluk60]

So she's in an end of life room at the care home. It's very dignified isn't it? I do hope both for her sake, your brother's & extended family she's as comfortable as they can make her. It's an awful time, at any time of the year but especially at Christmas time.

[pauluk60 in reply to nomoreheels]

shes in and out care home and hospital nomore hospital have a least 3 times they dont expect her to go through the day and then next thing is there sending back to care home she doesnt know whats happening but its taking a lot out of him hes 80 thanks for asking nomore

[marie66]

If he’s strong enough to say he can’t provide the 24 hour care she really needs, other arrangements can be made. The last thing he needs is further strain on his own health too. ((hugs)) M x

[pauluk60 in reply to marie66]

thanks marie shes in care home supposed to be able to care for all needs 5000 pound a month had 2 falls in 2 months and beat this one phoned brother when she took ill asking him what to do beat that

[lKeith]

pauluk60

Hi read your very moving post. I don't know if there is a right time to stop treatment, there are people out there that can help, try the local palliative care team they have worked wonders for me. I also went mad & got a carer to get me up, wash and dress me each morning. They are not medical people but they have seen how others cope.

I've had to accept that I can no longer do things, garden, decorating etc and have had to resort to paying people to do things for me that I would have done myself, it does take the strain out of life but does unfortunately cost. At least I do what I can, getting around etc.

Your brother should look at some or all of these alternatives as it will at least give him more time to tend for his wife.

IKeith

[pauluk60 in reply to lKeith]

thanks ikeith i will pass on your-remarks to him but i think she gone as far as they can treating her with hospital and care home

[CloudTreeDrive13]

If you brothers wife is so i'll why is there not a care plan in place to go to a nursing home. Less stress for your brother and he can visit her at anytime - just saying. Take care xxxx

[pauluk60 in reply to CloudTreeDrive13]

shes in care home costing 5000 pounds a month but more in hospital than there cause of illness

[keeta]

Hi paul so sorry for your family.i have been both sides of this first with my mums brother who was in his 80.s at that time and because of red tape had to look after his daughter who had parkinsons she was in her 40.s and he carried her up the stairs evey night.she eventually went to a care home .were she passed away.

And i have been a senior carer for years only work 1 12hour shift now because of mainly RD and angina .

As nomoreheels says .there should be end of life careplan.and needs wishes and family are the most important thing and their wishes are important to staff .she should have a DNR in place .staff were i work are highly trained .and when family take a break we sit with the resident for hours if needed so that they are not alone .

My heart goes out to your family .hugs paul xx

[pauluk60 in reply to keeta]

thanks for reply they have sent her back out of hospital and in care home under palliative care home is only across rd from him but then length of time it taking is getting to him and the way they have done it telling only hours to live twice and then next shes being transferred back to care home hes looked after her on his own for 2years and then care peeps coming round 4 x times a day its just got to much for him plus almost skint them what i am asking when should we stop surely we prolonging the inevitable i know its a bad/funny subject with most but surely with certain cases it would be best to end care

[keeta in reply to pauluk60]

Hi love the home has a duty of care to send her to hospital if she needs to go and thats usually decided by doctors the hospital will check her over and send her back to the care home cos they don.t have the beds

If they have said she is palliative. Possibly any drugs will be stopped and she will have end of life care.asmuch as it seems wicked ti keep someone alive while they have no chance of survival.but she is a human being who deserves to have pain free comfortable end of life care as this is duty of care for alltrained staff.i have seen how hard it is for family but he should talk to the care staffabout his worrues and his own health .not knowing what is going on will only make his worry worse .my heart is with you and your family paul xx

[pauluk60 in reply to keeta]

thanks for your insight on this i dont think they have explained that way to him keeta i will phone him tomos and tell him ask what kind of care shes on but hes burnt out with it all hopefully as you have said shes on that treatment it just doesn't fair to her or brother to just keep her alive hope i dont sound to hard but i dont think Margaret would have wanted this end as a family we have been lucky when time to go we have gone quick so had no knowledge of this type of suffering well thanks keeta for your help

[keeta in reply to pauluk60]

Paul is she on a syringe driver usually with morphine and other drugs in it .because that normally will tell you how near to the end she is .you are right he needs to talk and ask questions .its so hard i.m so sorry xx

[pauluk60 in reply to keeta]

i am not near them keeta i phone him to see whats going on and he tells me the updates i will tell him to ask what care she is getting but she must be on something like that what you said he seems to go round the houses instead getting direct answers which he needs but said he was with hospital doctor for half hour monday and said they expected her to die in the night but thats 2nd time they said that then next day said she was going back to care home which i think will be under palliative care hopefully but care home is in change of manager which is not helping

[pauluk60 in reply to keeta]

keeta phoned brother to tell him what you said so i thought i would ring care home told me shes sat up in bed having breakfast and got good colour so phoned brother back he would not believe me and asked me to ring again done it and would you believe no Margaret there asked them to double check and definitely not at the home so have phoned hospital and shes not there so back to home and they are trying to find out whats happened well pick the bones out of that can you believe it not so wonder hes a nervous wreck its getting to me you dont loose someone surely

[keeta in reply to pauluk60]

First of all i.d make a complaint about the person who said she was there.what kind of care home is that.

I would presume now there is a paper chase ( discharge papers etc people just don.t get moved on without this .and would definately put a complaint in to all authorities involved .has she got a social worker .you need to start ringing around for him .never heard the likes of this let us no whats happened when you can.

[pauluk60 in reply to keeta]

keeta found she was at the care home but not in her normal room even care home rang the hospital and she was already with them cant believe it supposed to be top knotch care home barchester group was paying top whack the silly man social worker as been a very big help and got his money back from them so what a perfomance

[keeta in reply to pauluk60]

That should not happen hope there is a complaint going in .more importantly how is she

[pauluk60 in reply to keeta]

said she was sat up in bed had her breakfast and was a good colour thanks for your concern and help its been well appreciated

[keeta in reply to pauluk60]

No problems paul .take care x