awful situation with OH going into council funded care

[JaquelineM]

Just need to have a rant /moan about our current situation . A couple of months ago I came to the realisation that I simply could not carry on looking after OH . Without going into the reasons , I really felt I was heading for some kind of breakdown. As OH not self funding (and we are not married ) I contacted the social worker and various meetings were held with GP consultant etc . the upshot of which was that it was agreed by everyone that D needed to be placed in a care home . However then he was assessed for housing with care which means being moved to a flat in a block with carers on site 24 hrs . There is no way he can look after himself now and couldn't possibly manage , also has history of absconding from respite care and has had two DOLs in the past . Nonetheless the funding panel decided on that option , I had to furnish and equip the flat , ( not an easy task when looking after a PWD ) , everyone who knew the situation predicted that it would be a disaster , and it was ! In the space of two weeks D had managed to leave the building without anyone noticing countless times , the police had been involved several times , bringing him back when he was found wandering in the street saying he lived in Sussex ( he did once ) or some other place . In addition he was not eating properly ,living on bread and jam , apples and tea because he refused to let the carers into the flat , or let them do anything for him . Fortunately it was fairly near home , so I was going every other day to do what I could ,( while being told " you've put me away because you don't love me anymore " ) I sent a safeguarding concern email to the Adult Protection team , who contacted Social services to say he must be moved to a safe environment immediately , however it transpired that there was no bed available in the borough!!! Two days later he was picked up in the street again by the police and taken to the local hospital , they kept him there for five days over Christmas , then sent him to a care home in another borough as a temporary measure . so the poor man has been moved three times in the last few weeks , is more confused and agitated than ever , he has broken a window trying to get out and is generally proving to be very difficult to cope with , they are now trying to find a permanent place for him . All this has happened , I can only conclude , because our cash strapped borough has shortsightedly gone for the cheapest option , ignoring the opinions of the professionals who have known D for some time . I am very upset and angry , and will be writing a very strongly worded letter of complaint when it is all resolved . Also of course very, very sad that it has come to this , but somehow I can't begin to process it all while things are in such an unsettled state . Sorry about this lengthy screed and thanks to anyone who manages to read it all

 

[allchange]

Just need to have a rant /moan about our current situation . A couple of months ago I came to the realisation that I simply could not carry on looking after OH . Without going into the reasons , I really felt I was heading for some kind of breakdown. As OH not self funding (and we are not married ) I contacted the social worker and various meetings were held with GP consultant etc . the upshot of which was that it was agreed by everyone that D needed to be placed in a care home . However then he was assessed for housing with care which means being moved to a flat in a block with carers on site 24 hrs . There is no way he can look after himself now and couldn't possibly manage , also has history of absconding from respite care and has had two DOLs in the past . Nonetheless the funding panel decided on that option , I had to furnish and equip the flat , ( not an easy task when looking after a PWD ) , everyone who knew the situation predicted that it would be a disaster , and it was ! In the space of two weeks D had managed to leave the building without anyone noticing countless times , the police had been involved several times , bringing him back when he was found wandering in the street saying he lived in Sussex ( he did once ) or some other place . In addition he was not eating properly ,living on bread and jam , apples and tea because he refused to let the carers into the flat , or let them do anything for him . Fortunately it was fairly near home , so I was going every other day to do what I could ,( while being told " you've put me away because you don't love me anymore " ) I sent a safeguarding concern email to the Adult Protection team , who contacted Social services to say he must be moved to a safe environment immediately , however it transpired that there was no bed available in the borough!!! Two days later he was picked up in the street again by the police and taken to the local hospital , they kept him there for five days over Christmas , then sent him to a care home in another borough as a temporary measure . so the poor man has been moved three times in the last few weeks , is more confused and agitated than ever , he has broken a window trying to get out and is generally proving to be very difficult to cope with , they are now trying to find a permanent place for him . All this has happened , I can only conclude , because our cash strapped borough has shortsightedly gone for the cheapest option , ignoring the opinions of the professionals who have known D for some time . I am very upset and angry , and will be writing a very strongly worded letter of complaint when it is all resolved . Also of course very, very sad that it has come to this , but somehow I can't begin to process it all while things are in such an unsettled state . Sorry about this lengthy screed and thanks to anyone who manages to read it all

Sorry to hear this.

Editted post as realised he is no longer in hospital.

Push his right to family life to try to keep him within reasonable visiting distance.

Best wishes.

 

[Amethyst59]

I’m afraid I have absolutely no experience of this at all, but it sounds a horrible situation...and I didn’t like to just read this and not say anything. It just goes to show that care really is a lottery...dependent on where you live. I hope someone with experience of this comes along soon, to give more practical advice than I can offer.

 

[karaokePete]

I too do not have any experience of this but just wanted to pass on my best wishes. Stay strong and never apologise for a venting post as that is one of the reasons the forum exists. We all understand as we all walk the same road, even if each one of us is at a different place along the road.

 

[Shedrech]

hi @JaquelineM
I too am at a loss what to say
but it may help to talk with one of the folk on the AS Helpline
0300 222 11 22
Monday to Wednesday 9am – 8pm
Thursday and Friday 9am – 5pm
Saturday and Sunday 10am – 4pm

 

[love.dad.but..]

The poor man...he is not as any sensible person can see getting the expert care he fully deserves and you should expect...I am so sorry...your post is really upsetting as showing how a much loved person with dementia can be so let down by the safeguarding system. I truly hope a suitable place is found asap to keep him safe.

 

[JaquelineM]

Thanks all for your replies and thoughts . It now seems as though OH may be able to go to the home where he was in respite care in August , which I liked , and was much more suitable than where he is at the moment , also it is nearer for me to visit ,( there are only two care homes in our borough neither of which are suitable for OH ) so I am keeping my fingers crossed and hoping for some better news soon .

 

[love.dad.but..]

I am keeping my fingers and everything else crossed also

 

[JaquelineM]

Thanks, love.dad.but ..! I'm afraid I can't remember your exact situation , but hope things aren't too difficult for you at the moment , I will let you know the eventual outcome

 

[love.dad.but..]

Thanks, love.dad.but ..! I'm afraid I can't remember your exact situation , but hope things aren't too difficult for you at the moment , I will let you know the eventual outcome

I am 10 months post dad passing away having lived with him in his home for 10 months after mum died suddenly at home and then dad was in a dementia nursing home for nearly 3 years until end of life. So..hopefully I don't ever have anyone else close to me developing dementia but like others TP gave me so much advice and support when I needed it most and I try to do similar especially if circumstances etc experienced with dad. Best wishes for the coming days and a good outcome

 

[Slugsta]

What a horrible situation JaquelineM! I have fingers and toes crossed on your behalf.

 

[JaquelineM]

Thanks Slugsta !

 

[Caz60]

Hi JaqueineM,
Just thought I would check out that things are going well for you now ,like one day at a time .
Thankyou for your input on my situation and your honesty I will be tredding this path.
You're advice was very much appreciated. Xx

 

[JaquelineM]

Hi JaqueineM,
Just thought I would check out that things are going well for you now ,like one day at a time .
Thankyou for your input on my situation and your honesty I will be tredding this path.
You're advice was very much appreciated. Xx

thanks Caz60 , I have been meaning to post an update on our situation , but have not done it so far because things are still far from resolved . OH was moved last Monday to the care home where he had spent a week in the summer , and which I had requested if possible , as it was very good. However on ringing the home on Tuesday morning to see how he was I was told by the manager that they couldn't keep him , as he was being violent and disruptive . He had tried to climb out the window in his room , had torn down the curtains , had been awake all night roaming about trying to escape , and had had an altercation with one of the carers which resulted in her getting a sprained shoulder , and also he hit the manager in the face when she tried to intervene ! Oh dear , they are now struggling to manage him while the mental health team get their act together to get him into a psychiatric unit for assessment . Fortunately he has been prescribed some anti psychotic pills which are calming him down a bit apparently . What a horrible mess , the poor dear man has been moved four times in just under two months , it's no wonder he has become so difficult, he must be utterly traumatised . All this because the wretched council ignored the opinions of everyone who knew him and decided to put him in that ridiculous flat .!!!! I can't tell you how angry and upsetI am about it all .

 

[Rolypoly]

What terrible times you are having.even when you think it’s sorted, it turns out not to be. I’m not surprised he has shown such reactions after all the upheaval he has faced. How confused he must feel, and how let down you must feel, as well as seething. Have you considered writing to your MP and local paper about this farce? Keep posting.

 

[Caz60]

thanks Caz60 , I have been meaning to post an update on our situation , but have not done it so far because things are still far from resolved . OH was moved last Monday to the care home where he had spent a week in the summer , and which I had requested if possible , as it was very good. However on ringing the home on Tuesday morning to see how he was I was told by the manager that they couldn't keep him , as he was being violent and disruptive . He had tried to climb out the window in his room , had torn down the curtains , had been awake all night roaming about trying to escape , and had had an altercation with one of the carers which resulted in her getting a sprained shoulder , and also he hit the manager in the face when she tried to intervene ! Oh dear , they are now struggling to manage him while the mental health team get their act together to get him into a psychiatric unit for assessment . Fortunately he has been prescribed some anti psychotic pills which are calming him down a bit apparently . What a horrible mess , the poor dear man has been moved four times in just under two months , it's no wonder he has become so difficult, he must be utterly traumatised . All this because the wretched council ignored the opinions of everyone who knew him and decided to put him in that ridiculous flat .!!!! I can't tell you how angry and upsetI am about it all .

Oh i do feel for all concerned this shouldn't be happening when all the details are in front of them ,the poor man .And distressing for you too ,it sounds like a letter or phone call in the right place is needed .xxx

 

[JaquelineM]

just giving an update on our situation , OH has been at very nice ( but unsuitable for his needs ) home for nearly two months now , while social services try to find a place where they can cope with his sometimes violent and disruptive behaviour . He has got into a pattern where he is awake most of the night rampaging , as they put it , around the building going into other peoples' rooms , breaking locks on doors , pulling down curtains etc . this in spite of being on risperidone , lorazepam and a sleeping pill of some kind . Normally when I go he is either very drowsy or sometimes fast asleep , and he looks so frail , has lost a lot of weight and it is hard to know where he gets the strength to cause so much trouble . When I went last he was awake and actually knew me , we sat for two hours holding hands and having one of those slow and utterly bizarre conversations that sometimes happen , it is all so heartbreakingly sad , at one point he looked at me and said " we have had some magical times together , haven't we ? " one of those moments when it's very hard to hold back the tears . Apparently social services have tried twenty six different places , none of which could take him for one reason or another , but finally yesterday I had a call to say that they have found a place with an EMI unit which can accommodate him and he will be going on Tuesday . I'm really hoping that this place will work out well , fortunately it is not too far away , but no doubt he will be further traumatised by the move ( the fifth since the beginning of December , due to council incompetence ) and will take a while to settle . Fingers crossed , and all best wishes and thoughts to all my fellow travellers along this difficult road

 

[karaokePete]

At least that sounds like a positive development. I do hope all goes well for both of you next week and beyond.

Do keep posting to let us know how things pan out.

 

[Caz60]

just giving an update on our situation , OH has been at very nice ( but unsuitable for his needs ) home for nearly two months now , while social services try to find a place where they can cope with his sometimes violent and disruptive behaviour . He has got into a pattern where he is awake most of the night rampaging , as they put it , around the building going into other peoples' rooms , breaking locks on doors , pulling down curtains etc . this in spite of being on risperidone , lorazepam and a sleeping pill of some kind . Normally when I go he is either very drowsy or sometimes fast asleep , and he looks so frail , has lost a lot of weight and it is hard to know where he gets the strength to cause so much trouble . When I went last he was awake and actually knew me , we sat for two hours holding hands and having one of those slow and utterly bizarre conversations that sometimes happen , it is all so heartbreakingly sad , at one point he looked at me and said " we have had some magical times together , haven't we ? " one of those moments when it's very hard to hold back the tears . Apparently social services have tried twenty six different places , none of which could take him for one reason or another , but finally yesterday I had a call to say that they have found a place with an EMI unit which can accommodate him and he will be going on Tuesday . I'm really hoping that this place will work out well , fortunately it is not too far away , but no doubt he will be further traumatised by the move ( the fifth since the beginning of December , due to council incompetence ) and will take a while to settle . Fingers crossed , and all best wishes and thoughts to all my fellow travellers along this difficult road

Hi JaquelineM,
Sorry to here of your situation it is so worrying when they are not settled and in the right place for them.Your OH has been moved more than my OH but hopefully he will find the correct place next week.Its not straight forward at all is it although like me you will be feeling mixed emotions, more happy than sad ,a move in the right direction.
My hubby is not suffering behaviour problems but if he does he will have to move,again .
Currently he is much worse since going into a care home and transferred to a nursing home ,although he is safe now but not feeding properly and incontinence has set in .It makes me feel so bad when he's sat there with his head down and not communicating.
I do understand how you feel it really hurts doesn't it?
Still waiting for assessment for financial side of things moving from care home to nursing home has delayed it all.
I'm praying for you ,that it works out xxmuch love

 

[JaquelineM]

thanks all for your replies , I will let you know how it goes , @Caz60 I am sorry to hear that your OH has deteriorated since going into his care home , I suppose it is not surprising as it must be such a trauma for them to suddenly be in a different environment , I understand why you feel bad when you see him , I have similar feelings myself but as we all know sometimes it is the best solution , hard though it is in many ways . Meanwhile I hope you are managing to enjoy your free time now