So bizarre !

[jugglingmum]

Ann - I would have been so cross, that I would have had tears streaming down my face whilst on the phone, I hope you held it together. Hope there is progress being made even if slowly. Do follow the complaint through, even if it is in a few weeks time.

did anything progress on your complaint to school? I hope so.

One of the things that has floored me over the last couple of years is having to do battle on so many fronts at once, but you do just have to keep going.

No news from brother, it may be a bit early to hear from him yet (he is a night owl) so don't know if house exchanged today.

Amy - glad you FIL has weathered his chemo, we do have a bank holiday the same weekend.

Dementia awareness week apparently, and primary school is doing quite a bit. Newsletter said all years would have age suitable discussions. I suspect more and more children are affected by it. Son had a class discussion today, and son spoke about brain shrivelling that he had seen on the Angela Rippon ageing programme and then said he had also said the worst bit is not the memory loss but losing who they are and they are like the living dead His friend didn't speak up in class but told son that his gran has dementia and more things about how it progresses - continence and eating issues that son didn't know. Not had a chance to talk to him 3 min journey from childminder to home and then 10 mins to be out again to cubs. Oddly probably better to hear from his friend than me.

Slugsta - kingfishers sound amazing. I do love seeing them when I canoe.

I've somehow volunteered myself to accompany school trip to zoo on Friday so if I see a hobbling lady taking photos I'll know its Ann.

 

[Ann Mac]

Morning everyone,

Amy, so glad your Fil wasn't too badly affected by the first chemo treatment - fingers crossed that he continues to be able to cope well with it, and that it helps xxxx

Jealous of the kingfisher sighting, Slugsta - it and woodpeckers are on my photo wish list - had lots of quick glimpse of both birds, but never yet managed a decent shot!

Red - I hope you have a fab holiday xxx

JM - glad your son is ok, Hun. I think you are right that often kids take in info better when it comes from their peers, rather than we as parents trying to tell them. I wish my youngest had a friend the same age who she could talk too - I'm sure it would help. Youngest has been left rather upset about the whole school business, and I've arranged for her to have some sessions with a youth support worker - the support worker suggested that she put youngest in touch with a young carers group, and I've jumped at the chance. BTW - meeting on Friday with the head re the school business - I'll let you know what happens then x

And to everyone, sorry if I've missed out on all your news - I skim the thread when I get chance, but this last week especially, its felt like I have been totally up to my neck that I haven't been able to take the time to do much more xxxx

OH went to see Mil yesterday afternoon. Her frame had finally been sent over from the EMH (she has been without it since Friday) and he found Mil and a nurse in an 'altercation' as Mil attempted to escape through the ward fire exit, and the nurse attempted to persuade her back to her bed for the last lot of IV antibiotics. She is pretty much getting one to one support from the medical nurses on the ward, by the sound of it He visited again yesterday evening, as she was again low on clothes, and he said she just ranted about going home (to her old address, not here) for the whole time he was there. His description of how she is doesn't quite match the rather snotty statement I was given last Wednesday, saying that she was on 'the optimum medication', nor the ward managers claim yesterday, that Mil was 'very calm' during the less than 48 hours she spent on EMH in between stays on medical, does it? (When the ward manager said that, I asked him what about when I was on the phone to the ward during that time and I heard Mil and a nurse arguing about Mil wanting to leave? All he could say was 'Oh! Did you? Er - right'!)

She is going back to EMH today, now she is on oral antibiotics. How quickly they will move to try and discharge her is anyones guess. How they are going to keep her there when she appears to be so hell bent on leaving, prior to the discharge when she is no longer under any section or sanction to prevent her from doing so, is another matter!

I think this whole mess has come about because they had 'allocated' themselves a certain amount of time to 'deal' with Mil whilst in hospital, and that time hasn't been enough because (A) they hadn't really believed us when we explained the ineffectiveness of some of the meds and have persevered with diazepam and so on long after they should have given up on it, (B) her 'treatment' didn't start promptly due to the main consultant going on holiday, and because (C) Mil has spent 5 days being treated for a UTI (which of course impacts on behaviours so makes any assessment impossible) and in total, spent a further 15 days actually away from the ward because of the chest infection(s). The time they allowed hasn't been enough, but they are desperate to empty the beds for the next patient, so the priority now is getting rid of her, whether they have helped or not. And in order to do that, they haven't stuck to the proper procedures, and just hoped that we wouldn't pick up on it. As Lady A says, I wonder how many others they have pulled that sort of stunt on

Youngests birthday today, she has asked for cash only as she plans to have a weekend with her big sis in Stockport in the near future, when they have plans to 'hit the shops' and generally have fun. OH will probably visit Mil this evening - I honestly don't know if I can bring myself to go back to that blooming EMH ward at the moment, I am so angry and disgusted at them and worried that I might blow if anyone says the wrong thing !

Hope you all have a good day xxxx

 

[CeliaW]

Happy Birthday to youngest ☺

Just a passing thought but have you considered if you could arrange an advocate to potentially be available to go with you to any meetings about MiL? I know you are more than capable of making your own points and being firm but, based on various instances I have heard / read about, the presence of an "external" person as an advocate can significantly impact on how much the authority tries to slide round the rules and basically how they fudge things to get the result they want. I know Carers Assoc and AZ Society do it and also MIND I believe. Worth a thought?

Take care xx

 

[Batsue]

Ann, if you do go to visit Mil make sure you use your crutches whether you need them or not.

 

[dottyd]

And Blow!

If you need to!

 

[RedLou]

Just popping in before I bow out -- if I were you, I would not visit, Ann. You don't need the stress and I do believe that your hip should be rested as much as possible, and I also believe you actually do deserve a life -- you know, one of those when you can contemplate doing nice stuff and not constantly being stressed and having to put someone else first 24/7. --Take care all of you. JM - hope the house sale is sorted.

 

[Slugsta]

Have a lovely time RedLou, you deserve it (as do you all).

Happy Birthday Youngest Maclette. I hope she has a lovely day, some girly time with big sis sounds just perfect

(((Ann))), there is actually no reason why you should visit MIL - other than the vile GM. She is safe, fed and cared for. She doesn't recognise who you are when you are there or remember the visit afterwards. You have only recently undergone a very painful procedure for your hip and would benefit more from the extra rest than MIL would from a visit.

The next few days are likely to be the dangerous ones - with the unit desperately wanting to get MIL out. If she tries to leave and they stop her, does that mean another section or DOL hearing? I do hope they don't try any more underhand tactics

Any news about when OH might be able to start his new job (I am assuming that you are on speaking terms at the moment)? Those long shifts are not conducive to the good health and temper of him or you, Ann, even without MIL at home!

I've had a nice, quiet day, some of it with my best boy on my 'lap' (I'm lying on the bed). The best boy is my big, black cat. He's a real softie but not a lap cat (might be something to do with his size!) so to have a cuddle with him is a real treat.

I hope everyone has a peaceful evening.

 

[Onlyme]

I agree that it sounds as if your MIL is now feeling more herself and will ramp up to full strength sundowning. I'm pretty sure this is going to take them by surprise as they seem to think they have fixed her. The longer she is in the more likely she is to blow.

Please stay away, refuse to have her home, stick your fingers in your ears and don't listen to the guilt monster.

 

[jknight]

Still bowing down in the face of your awesomeness, Ann!!!!

 

[Ann Mac]

Hello all,

Have a fab time, Red xxx

Celia, an 'advocate' introduced himself on the EMH ward just before one of the many 'meetings' they asked us to attend there. He attended the meeting, haven't seen him since and we were given no contact details CMHC mentioned an advocate when I spoke to them, but didn'#t seem surprised when I outlined the very little contact/input Mil had had from one.

Slugsta, yep, lol - OH and I are OK Should be very soon on the new job - all paperwork completed, I guess its just waiting for it to go through the 'process' now, which I would imagine won't take long. Meanwhile, he has another interview today! This job would be completely new, and he wouldn't start for several months - but its an area he is interested in, and will be back up, if the new role doesn't turn out to be as rosy as its been painted!

I went to see Mil last night - apart from anything else, the ward manager from EMH has asked to meet us this morning, at 11 - and I needed to see for myself how she is. Despite being told she was being transferred back to EMH 'definitely' yesterday, she is still on MAU, and no explanation has been offered as to why. However, we went in to find her case, bags, wheelchair etc, positioned all around her bed, so we assume that the move back to EMH is not happening at all now. Mil was a lot calmer than she was from OH's description of her behaviour the day before, and in fact, she was almost 'jolly'. Completely on another planet in terms of having not one clue really about what was going on, exactly where she was or anything else, but not seeming to be particularly stressed by it. She identified OH as her son, but then asked about his Mother and Father, and then spoke about her parents as though they were also OH's parents. She described how she had been playing a game 'all morning and all afternoon', where she had sang songs, and during each song she had run back and forth between 'This bed here and that bed there' to see how many times she could do it for each song she sang - she told me it was to 'pass the time'. She also said she had gone to the cinema to see Doris Day and Rock Hudson in a film, 'But it was an old film, Ann - Doris was very young in it, not old and fat like she was when I saw her in the town last week. You know - the town where I sometimes go to sign papers?'. Nothing paranoid or scary, no sign of her getting cross and frustrated, we just went along with her ramblings - albeit at times with a struggle to keep a straight face - not laughing at her, just more or less a reaction to some of the more unexpected comments she came out with, I think!

I would have liked to find a reason to get her out of bed to see how she was walking, but with visitors all around on a busy ward, there didn't seem to be an appropriate opportunity to do it.

DC also rang yesterday, but I missed the call and so will have to contact them this morning too - preferably before we walk into this meeting with the ward manager. We have no idea what this meeting is going to cover, OH suspects that the pile of stuff around Mils bed indicates that she may be discharged today, but after the last few days they surely must know that if they don't follow procedure - which includes a formal discharge meeting 'with all involved parties', (which we have to be told about in advance - no letting us walk in blind as they did with OH the other day) , and that only AFTER all assessments are carried out and if necessary, a new care plan drawn up - then I will go down the formal complaint route with the CHC. I want to know what they mean by saying she is on the 'optimum medication' - does that mean that they feel they have helped her? In what way? And how can they be sure of this being as since the final medication change they told us they were going to introduce, she actually only spent 6 days in total on EMH, with her spending 8 days on a medical ward because she had an infection, in the middle of those 6 days? I want to know what her sleeping is like and what her mobility is like. And I want to know what happens if we get her home and find that behaviour wise she is either no better or worse - because I've made it clear all along that I simply can't go on being responsible for over-seeing and organising an endless stream of medication tweaks and changes, and dealing with all the side effects and stresses that brings. I am walking into the 'meeting' with a copy of the discharge recommendations for Wales and a notebook and pen - and I will make a point of writing down every damn thing they say because quite frankly, they have proved that without a written record, they are liable to lie at a later date!

I'll update you all - if I get chance - after the meeting. Take care, everyone xxxx

 

[CeliaW]

Just a quick note Ann, what about recording the meeting on a phone or tablet? You do have to tell them you want / intend to do that and I think they could refuse to let you. But, the very act of telling them you want a verbatim record "so that it can be referred to in any ongoing / further discussions you have with the relevant authorities" may, shall we say, encourage them to stick to the rules? I think somewhere I have info on legality of being able to record meetings and will have a look.

I'll try but may not get back before you leave, be strong and the best of luck. I am sure you and OH have a game plan - maybe type up a list of criteria that should be met, questions that must be asked and answered as its oh so easy to forget something in the heat and emotion of the moment.

Take care x

 

[Ann Mac]

Just a quick note Ann, what about recording the meeting on a phone or tablet? You do have to tell them you want / intend to do that and I think they could refuse to let you. But, the very act of telling them you want a verbatim record "so that it can be referred to in any ongoing / further discussions you have with the relevant authorities" may, shall we say, encourage them to stick to the rules? I think somewhere I have info on legality of being able to record meetings and will have a look.

I'll try but may not get back before you leave, be strong and the best of luck. I am sure you and OH have a game plan - maybe type up a list of criteria that should be met, questions that must be asked and answered as its oh so easy to forget something in the heat and emotion of the moment.

Take care x

Thanks, Celia - I'll float the idea of recording it (or at least asking) past OH - myself, I think its a good idea.

Yep - am writing out a list of concerns, questions, etc, that I want the answers to. I don't trust them any further than I can throw them, 100% convinced that this whole mess is about needing beds and passing the buck. I intend to make it very clear that they had better be very sure about what they propose to do, because I can and will take this forward with CHC. Its not just OH and I that they have short changed - their treatment of Mil is just as bad

 

[AnoviceinN1]

Hi there, I think in your shoes I would really try to get hold of DC before you have that meeting. I would concerned that they could tell you that they will no longer be able to accommodate MIL - if they did, I imagine that this would have a massive impact on what you and your OH would feel you can do going forward. Having said that, I wouldn't commit to anything at all during the meeting at the hospital, even if you can't get hold of DC beforehand. It would just give you one more piece of information, whether reassuring or not.
Good luck with everything!

 

[Onlyme]

Call m cynical but I think you will find they have assessed her and are arranging for her to go into DC place for 'rehab' that never happens.

At the moment, judging by how CHC assessed Mum, MIL wouldn't qualify for CHC as she is now not mobile and can't escape And has reduced her qualifying CHC score.

 

[dottyd]

If she still has challenging, unpredictable and intense needs I think you still qualify. Watch the Luke clements video. You don't have to be mobile to qualify and don't forget a well managed need is still a need.

 

[Onlyme]

When Mum was assssed unless she was hitting people then she wasn't an A. You had to have 5 A to qualify.

I think Ann will be walking into a discharge meeting by stealth this morning.

 

[Ann Mac]

Back from the 'meeting' - talk about emotional blackmail!

Greeted on the ward with the news that Mil had been up for most of the night. Consutant and ward manager from EMH present. Taken to a little room, asked what we wanted. we said we wanted a proper assessment. They allowed that that hadn't happened due to consultant being on holiday and the numerous infections. They also said that a physio assessment showed she could manage stairs.

Then they launched into our 'options'. Which mostly centered on a repeated pronouncement that if we 'opted' to keep her in hospital whilst she had a proper assessment, then we would have to realise that she was more likely to fall, more likely to get more infections and more likely to 'loose' all her abilities. That she was 'more likely' to come out worse. That we might be making things worse for her. Oh, they briefly touched on the fact that if there was a proper assessment there was also a chance that they could help - but then it was straight back into how if WE wanted her to stay she would most likely fall, get ill, etc., etc.

OH was, I have to say, fantastic. He blasted them over withdrawing antibiotics without consultation, he backed me up and even took the lead in constantly redirecting them to the fact that they hadn't even really tried to help her, that withdrawing a few meds then wanting her out before they had even judged if it had helped was hardly what they had led us to believe they would be doing. The ward manager made a remark that struck me as really offensive - something along the lines of 'If you want us to keep her in so you can have a bit more of a break' . . . and I blew with him, completely. I asked him how dare he imply that this was a bloody break when their actions have caused us more stress and worry in the last week or two, than we have experienced in the last 2 and a half years? And I told him he was offensive. He apologised. OH brought up their insistence of sticking with diazapam when we had found that it didn't help, aand when even DC had said it was useless? The consultant told us that once he dropped the dose to 2mg, DC had reported that it helped. That was a lie I got him on straight away - you see, I was never told that he had seen her at DC and that he had altered the dose, I only found out about that whilst she was in respite, and so (being as I do all the prescriptions) that prescription had never been filled and that dosage had never been given at DC - so DC could not have 'reported' any such thing. It was all 'er. . . . well ....er' in response. I had them over saying that her meds could be tweaked at home, pointing out that had been tried and not worked, and was one of the issues that her admission was supposed to be preventing.

So - after half an hour of being battered with the attempted guilt trip of how we would make things worse for her if WE insisted on them carrying out a proper assessment, they finally gave us the last option. She is staying in, under a section 3. I asked them to explain it to us. They told me that its 'flexible' and 'for her protection', that it could be lifted if they were able to help and she could come home. What they didn't mention at all was that she would be entitled to free care under a section 3 - I found that rather telling!

If, after however long this 'assessment' takes, they are unable to help her, then it will be residential care. Because even as they were arguing and trying to make us feel bad enough to take her home asap, they allowed that her presentation is way beyond what anyone could possibly cope with. Odd how we could see the contradictions in what they were saying, yet they seemed oblivious.

I am partly relieved, partly furiously angry. That was a mental battering, no other word for it. I can see why OH was so bamboozled last week when he was put on the spot. They made it really hard for us today, and I have no idea how we managed to stick to our guns at all. It was brutal.

 

[CeliaW]

Huge hugs for you both. Well done on sticking to your guns and picking up on the points. Have you, or will you, request an urgent written summary of the meeting that you can review and sign "if you feel it is a full and accurate record"? I think that is really important to get and once this is in your hands and correct, you have a reference point to work from.

Hope you can relax a little for the rest of the day, you must both feel emotionally and generally mentally battered. Please be kind to yourselves, have some planned relaxation and enjoyable times if you can. Take care xx

 

[marionq]

If," after however long this 'assessment' takes, they are unable to help her, then it will be residential care. Because even as they were arguing and trying to make us feel bad enough to take her home asap, they allowed that her presentation is way beyond what anyone could possibly cope with. Odd how we could see the contradictions in what they were saying, yet they seemed oblivious. "


That is the most telling paragraph Ann. No one could cope but please take her home and don't bother us!

 

[dottyd]

Well done. You stuck to your guns be pause you had no other option. Coming home was not a possibility.

Your mil needs 24/7 care and neither you nor your oh can provide that.

They know that which is why they tried to guilt trip.

What if she falls. What if she falls at home. Accidents do happen. You can get infections at home and so on

They will probably do an assessment ASAP and them recommend a nursing home.

Be a step ahead of them Ann and look for the one you like not the nearest.

You may have to wait for a place but don't let them rush you.