This system has beaten me

[Meppershall]

Back in Feb I posted a very similar story to you and received helpful advice similar to that quoted. It was as predicted. Deeming she had mental capacity, my Aunt returned home with a package of 4 care visits per day. However, instead of placing her bed downstairs as I thought agreed, OT left her with a written instruction by her chair to not go up the stairs on her own to bed or bathroom

Needless to say she was found at the bottom of the stairs by the carer within the week. I had already raised a formal complaint on her first day regarding unsafe discharge from hospital and the risk.

Needless to say, they changed their mind regarding mental capacity and she is now settled in a Care home in most importantly, a safe environment.

The real point of my reply is to express to you and everybody who experiences at first hand, inadequate or poor care/decision making, that they should officially raise these concerns with SS or the hospital PALS, and doggedly follow this through. If you do not, then the same errors and mistakes will continue to be perpetuated.

To cut a long story short, although the local authorities appeared reluctant at first, over a period of three months I entered in to a very extensive written dialogue with both SS and the hospital concerned, including 2 face to face meetings. They ultimately apologised for the errors and at the same time confirmed, based on the issues raised and findings, that changes in procedures and training would be made and in fact SS were using it as a case study in their training.

The Matron of Older Persons Services for the hospital thanked me and her final words to me were. "The only way we can improve is if more people raise these issues".

Oh my word ! This just terrifies me, I hope your Aunt is settled nicely now, that must have been an awful time for you. It's needless and so stressful and I wonder if the SW was having to go through something like this personally they would be so willing to allow their relative to go home

 

[Meppershall]

A ray of hope.........maybe

Well, today we went to the Memory Clinic. The Doctor we saw was very nice, very down to earth and very firm. She is not happy that dad is being allowed home, even with a care package and is going to call the SW to object. She even said that she would complete any forms needed for the CoP Deputyship application if required !! Result ?? Not quite yet, she said that he can go home this weekend, pick him up Saturday and return him to the NH on Sunday and we are to go back to see her on Monday and explain how things went - I hope she can see through a liar cause he is'nt going to tell the truth ! We'll see. I'm still terrified that something awful may happen, but he might also realise that he will be completely on his own and be scared - I don't want to put him through that, but it looks like it might be my only way.

It was brilliant to meet someone who had a complete understanding of Lewy Bodies, and recognised that he needs to be assisted in his day to day living but also needs to be accompanied at all times - and she told him so !! But I can't wait for the wekend to be over and get him back safely to the NH. Watch this space

 

[Meppershall]

I understand your frustrations, given the core symptoms of the disease. What worries me is that the SW appears to be overlooking the supporting symptoms of DLB, which includes fainting and the risk of falls among other things. I am not sure what risk assessment the SW and DoLS have carried out, but to me it seems that they do not have a realistic grasp of the potential risks involved here. Given also the fact that there is still low awareness (and poor levels of training) of the different types of dementia and their symptoms, I would still, despite the difficulties, insist that you are not happy and that you want a different opinion. I would also write to the SW stating that should your father fall (and let's hope that he doesn't) and hurt himself, then you will hold him responsible for making a decision that has exposed your father to unnecessary risk.

Of course the issue is a complicated one in that if he doesn’t want to go into a NH, you can’t force him to go. However, if he is at risk and poses a danger to himself (bearing in mind the supporting symptoms of DLB), then I believe there are exceptions. I am not 100% sure, but I think the ruling is that person can be put into a NH if he or she is a danger to himself or herself (and others), as determined by a Dr.

Alzheimer's Society does has a legal team. It might be worth talking to them.

Thanks again Digilux x This is all great information, I hadn't realised that AS had a legal team so you're right, it may be worth contacting them. We've been to the Memory Clinic today and the Dr is going to contact the SW becasue she doesn't agree with the decision about him returnign home. The Dr is well aware of the DLB symptons and can hopefully trump the SW !! So fingers crossed x I had to smile, my dad asked for a second opinion and the Dr informed him quite sternly that she WAS the second opinion !! That put him in his place

 

[bumblefeet]

Good luck Meppershall!
It sounds like things are heading in the right direction for you at last.
It's terrifying to think of our loved ones sitting at home, grimly pretending they can cope, when in fact, nothing could be further from the truth.

So, am I to understand that he's home for one night then?

 

[Slugsta]

I'm so glad that you have finally found someone who understands the situation. Even better, as a consultant he has quite a lot of 'clout' so here's hoping that his input is what swings the decision in the right direction!

 

[Meppershall]

Good luck Meppershall!
It sounds like things are heading in the right direction for you at last.
It's terrifying to think of our loved ones sitting at home, grimly pretending they can cope, when in fact, nothing could be further from the truth.

So, am I to understand that he's home for one night then?

Hi Bumble xxx Yes, pick him up Saturday, take him back to the NH on Sunday, not long I know but it might just be long enough to frighten him when he realises nobody is there. I do wonder if this is just a ruse to let him think he has got his own way because the Dr did mention sectioning him to sort out his medication, and a stay in hospital, so we will wait for next Monday and go from there. I'm a bit scared

 

[Meppershall]

I'm so glad that you have finally found someone who understands the situation. Even better, as a consultant he has quite a lot of 'clout' so here's hoping that his input is what swings the decision in the right direction!

Thankyou Slugsta x It is encouraging, next Monday can't come soon enough

 

[Georgina63]

That does sound positive. Pleased progress is being made. Gx

 

[bumblefeet]

Hi Bumble xxx Yes, pick him up Saturday, take him back to the NH on Sunday, not long I know but it might just be long enough to frighten him when he realises nobody is there. I do wonder if this is just a ruse to let him think he has got his own way because the Dr did mention sectioning him to sort out his medication, and a stay in hospital, so we will wait for next Monday and go from there. I'm a bit scared

Don't blame you for being apprehensive, I would be too. Will you call round and check on him, or clench your teeth and let him get on with it? Good luck, however you choose to deal with it. Keep us updated.
xx

 

[jugglingmum]

Hope all goes well - I'm still of the opinion that you should let them take him and return him, if you are worried you can shadow them (be somewhere near the house when he gets there to see that he gets inside) but please please do as little as possible, you want this to fail, and the less you do the more likely it will.

I don't know if there is time to put cameras up in his house so you can see what he is upto, don't tell SS of course, but when he tells them he did x y and z you can say he didn't go to bed didn't cook etc.

Even better as they wouldn't have time to sort it out, phone up on Sat morning and say you've got norovirus and can't do anything - suspect that would be tricky if you did then appear - but a valid excuse not to be able to take him - this would delay it and then more time for a senior SW to get involved - I assume that you have spoken to the SW's manager and director of SSs so they are fully aware that a Memory clinic Dr has said he doesn't have capacity, and so legally they will be liable if he comes to harm and you will not hesitate to go to the local and National press if this happens.

 

[Digilux108]

Thanks again Digilux x This is all great information, I hadn't realised that AS had a legal team so you're right, it may be worth contacting them. We've been to the Memory Clinic today and the Dr is going to contact the SW becasue she doesn't agree with the decision about him returnign home. The Dr is well aware of the DLB symptons and can hopefully trump the SW !! So fingers crossed x I had to smile, my dad asked for a second opinion and the Dr informed him quite sternly that she WAS the second opinion !! That put him in his place

A step in the right direction. I think that the Dr can override the SW's decision, especially if she considers that your father is at risk of hurting himself.

 

[CeliaW]

It does still concern me that, if you are involved in any way with the home visit, you open the door to them saying that you are assisting...because it might be a solution. .. (I understand that you think this will prove it won't )

So stressful and so unnecessary. I would be saying no to any involvement. The idea of setting up a camera is interesting but do they plan to have any alarms or sensors set up?

Have you been able to speak to this SW's manager or (ideally) email whoever it is.

Hugs, take care x

 

[Meppershall]

He lasted five hours ('ish)

I've just got back in from taking my dad back to the nursing home.

I collected him at 11 this morning and after some really good, happy days in the week I was greeted by stroppy dad. Great. I eventually got him home after a tense couple of hours and left him with instructions for his medication and how to cook the pie he wanted for tea.

I popped round to let his neighbours know he was home in case they thought the house had been broken into if they saw lights on, that was about half past one.

Quarter past six, neighbour called, 'your dad has been found in a driveway two doors down, wet through (it's belting down here), fallen over and a bang on the head'.

When I got to my dad's house his lovely neighbour was dressing him in some clean dry underwear (poor man, I bet this wasn't something he had contemplated doing when he got up this morning! Thank god for kind people). And so very reluctantly we persuaded him to go back. It was either that or a threat to go and sit in A&E for 8 hours which I must admit I really didn't want to do on a Saturday night which is very selfish I know. So he is safe again. I don't care that the SW and DoLS assessor think he has capacity anymore, he is not going home.

I will be e-mailing the SW shortly, and if I don't get a call from her by lunchtime Monday I will let rip I think, she still hasn't replied to my e-mail from last week so I am already naffed off with her.

So there we go, he cannot manage. The crisis happened in record time, I'm just glad it wasn't worse than it was and that he is a very lucky man to have caring people living next door

 

[CeliaW]

I will keep my fingers firmly crossed that this is an end to the nonsense by the SW. However, I do hope there is a follow up by Social Services management about her poor judgement.

Your poor dad, hooray for good neighbours and hope he doesn't suffer any lasting ill effects from his time out of doors in the rain and his fall.

I hope you can get the opportunity to relax a little soon - take care x

 

[Georgina63]

Sorry all of that that needed to happen, but hope it's a relief that your Dad is back and safe. Hope he and you are ok.

 

[Meppershall]

Georgina and Celia x

I'm soo glad he's back safe in the NH even though he hates it, but like a fool I'm sat here crying I feel so guilty that this has had to happen. I'm not a cryer normally it's just that this has all been so stressful. A good howl will do me good though lol

Tomorrow is another day, I hope it's a good one xxx

 

[Kjn]

SWs seem to love a crisis to happen .
Needed one for them to see dad needed CH on discharge from hospital not sent home.
We had to refuse him home , someone else seemed to get involved and still awaiting a CH place sadly.

 

[TinaT]

The social worker who deemed your dad had capacity must have undertaken and passed training in capacity assessment. I would certainly check if the social worker has this extra training and qualification!!

I'm not sure but I think in cases of dispute such as you are currently experiencing you should be in your rights to ask for an independent external assessor to come and assess your dad.

As the long standing members of TP will know I cared for my husband who also had Lewy Body Disease and I personally can testify to the severity of symptoms such as hallucinations, great spatial awareness difficulties causing complete inability to complete any task for himself, obsessive behaviour.....the list is endless.

You are in no way behaving in a selfish way and I can say this because I too have cared at home and reached the point where it was no longer possible for one person to manage the disease.

Good luck in your quest to get your dad in the full time care his condition needs.

xxTinaT

 

[Georgina63]

Georgina and Celia x

I'm soo glad he's back safe in the NH even though he hates it, but like a fool I'm sat here crying I feel so guilty that this has had to happen. I'm not a cryer normally it's just that this has all been so stressful. A good howl will do me good though lol

Tomorrow is another day, I hope it's a good one xxx

You deserve a good cry but not to feel guilty (although I realise we all do!) as you are doing a great job on behalf of your Dad in a very difficult and stressful situation. Howl away and as you say tomorrow is another day. Gx

 

[SEASHELL]

Hi everyone

My dad has Lewy Bodies Dementia and after a stressful few months of my him being admitted to hospital with a UTI, then agreeing to move to a NH (witnessed by the SW), then realising he hated it and the SW agreeing he can move back home - despite my objections - it looks as if it is happening.

After not meeting the criteria for DoLS (assessed yesterday), he has been assessed by a care company and are in the process of arranging a date to go home.

I do not want him to return home. His neurologist is not keen on this decision. His specialist nurse thinks he should be in a NH. The carers at the home think he will struggle at home on his own even with a care package. The SW says he has capacity and that is that. Basically, I have been told that I need to let him go home as he wishes and allow a crisis to happen again - before it can be considered for him to go back to a NH, and he may not even agree to it then!

I have firmly advised the SW that I will not be involved in his care package, that this needs to be agreed between my dad, the care company and if required assisted by SS. I have refused to get involved with his medication and the organisation of blister packs from the pharmacy. I will not be assisting if he needs additonal aids once he returns home - the SW needs to sort this. And, I will not be involved in any financial agreement, the SW needs to sort this also. I have agreed to take him shopping for his weekly shop, but nothing else.

My question, am I acting like a spolit teenager who hasn't got her own way for refusing to help ? (I believe I was near a breakdown earlier in the year with all of his care needs, hospital appointments, looking after the garden, doctors, medication, his challenging behaviour, sulks- the list goes on and on). Or am I doing the right thing and stepping away from this situation ? I will still be looking in from the outside as I will be his only emergency contact (brother doesn't want to know). I'm trying to stick to my guns and stay away but don't want people to think bad of me either. I am having difficulty reconciling all of this

Try and get your father into an assessment centre. If it's anything llike the one my mother's been held in for the past 3 years they'll be so keen to keep him there you won't have to look for a care home.