Ann - I'm so sorry to hear how distressing a day yesterday was, it makes very hard reading.
Hope today is better for your sake.
Sending massive hugs
Hope today is better for your sake.
Sending massive hugs
So bizarre !
- Thread starter Ann Mac
- Start date
I second what Canary has said. God knows if that were my dad (and I realise that one day it might be) I would not want the video out there, but I really think that that's the surest way of securing the 1-1 care that MIL so desperately needs. If I were closer I'd offer to help in any way that I could. But please know that I - like so many others here - am sending strength, love and support to you all at this awful time.
Sam xx
Ann, I've been lost for words, this is just horrific for MiL and for you, OH and your family.
I feel that if she had any other illness she would not be left to suffer like this, thank goodness you have the total support of the staff.
I also think it would be a good idea to send the video today, waste no time in getting that awful "Manager" to see the reality of MiL's suffering.
A terminally ill, elderly lady on beanbags on the floor as no other way of keeping her (hopefully) safe - just heart-wrenching.
Thinking of you all - so much xxx
I feel that if she had any other illness she would not be left to suffer like this, thank goodness you have the total support of the staff.
I also think it would be a good idea to send the video today, waste no time in getting that awful "Manager" to see the reality of MiL's suffering.
A terminally ill, elderly lady on beanbags on the floor as no other way of keeping her (hopefully) safe - just heart-wrenching.
Thinking of you all - so much xxx
Hi. I can’t believe that changes that have happened and all because of neglect by the medical profession.
That aside I wanted to comment about your MIL trying to put herself on the floor. I’ve seen it before with various people in Mum’s home; they would lie down on the floor and refused to be moved or would return to floor as soon as possible. After some discussion it was decided to leave those who wanted to be on the floor on a mattress etc. It looked dreadful but I was told it is because we are animals who in our basic needs want to crawl to a safe space and curl up. The floor is seen as the safest place as we can’t fall and feel safe hugging the ground. Fighting to put MIL back on the bed is going against her basic instincts and losing a battle that you will never win. Mattress, crash mat, bean bags might be all her damaged self can cope with.
Love as always to you all
Me
That aside I wanted to comment about your MIL trying to put herself on the floor. I’ve seen it before with various people in Mum’s home; they would lie down on the floor and refused to be moved or would return to floor as soon as possible. After some discussion it was decided to leave those who wanted to be on the floor on a mattress etc. It looked dreadful but I was told it is because we are animals who in our basic needs want to crawl to a safe space and curl up. The floor is seen as the safest place as we can’t fall and feel safe hugging the ground. Fighting to put MIL back on the bed is going against her basic instincts and losing a battle that you will never win. Mattress, crash mat, bean bags might be all her damaged self can cope with.
Love as always to you all
Me
Ann, I'm sorry I haven't more to offer than ((((hugs)))) and to say I am thinking of you all often.
Red, that's done the job here! Thank you for sharing the lovely photo; what a delight!
Ann, have an extra (hug) just in case.
Ann, have an extra (hug) just in case.
Morning everyone,
Red - that baby is just adorable! What a little sweetheart - she looks full of mischief and so happy. Made me start the day with a big smile too - thank you xxxxx
Straight into the latest for everyone. Starting from this morning, Mil is getting 12 hours 1-1 care per day, paid for by CHC, with the review next Wednesday still going ahead, at which point the Nurses, care staff and consultant will tell the HB Manager if they want it increased to 24/7. I am so, so relieved, after what I saw Mil going through at the weekend - still angry that the manager tried to delay it at the expense of Mil's safety, I guess, but mostly just relieved.
The CH seemed to think that it was the email to Mr Gethings office that did the trick, but having seen the detailed notes that they have been keeping and sending, pages of them per day, I suspect it was a combination of the two factors. Whatever it was, yesterday morning there was an out-of-the-blue phone call to the CH from this manager, and a sudden capitulation. Though the manager did try, at the start of the call, to get the CH to agree to 6 hours per day, the CH manager just said No, that wasn't enough, and the HB manager changed it to the 12 hours without argument (which makes me think she was trying it on!) with the added info that if it needed increasing that would be dealt with at the meeting.
The CH are brining in agency staff today, to make sure the care starts quickly and until they can re-arrange their rota's. The 1-1 care will be provided by the regular staff, staff who know Mil, however, with the agency covering general care on the floor. The CH said that Mil's staff will change every two hours, partly because caring for her 1-1 is pretty intense and exhausting if she is agitated, and partly because Mil still has the tendency to get fixated on one person, if they spend a long period of time with her, and become aggressive towards them. I am so grateful that they have gone to the trouble of arranging things so that Mil's care will be provided by those that know her best. What was really lovely was the way the CH staff greeted me with the news when I went yesterday, they all were as relieved as I was, with big smiles and hugs all round, the odd teary eye, clearly thrilled that (as one put it) finally Mil is being treated like a 'human being and getting the support and care she deserves and needs'.
One of the jobs on my list today is to email the head office of the care home and let them know just how brilliant the staff at the CH, the managers, the nurses, the carers, all of them, have been throughout this whole 'battle'. Its the least I can do, because they really have been amazing.
Thankfully, on Sunday, when I headed back to the CH, prepared to spend the day, I found Mil sitting on a chair in the lounge, no signs of the TD symptoms, speaking far more clearly than she had been doing recently, all smiles and very chilled. She was like a different person, the change from the extremes of Saurday to this calm little lady on Sunday was totally unbelievable! I stayed an hour, went home, did some much needed housework - and fell asleep on the sofa for much of the afternoon. I was so tired. Monday I ploughed into my admin, after arranging with the CH that they would call me if they needed help with Mil. Monday morning started calm and sleepy for her, but by the early afternoon, she had shifted to getting up, banging and yelling and being aggressive, and that had then deteriorated to her being in the same state as Saturday. Once again, all the bean bags and mattresses had been moved from the sensory room to her bedroom floor, and she had been cushioned in the middle of them, with somehow the CH sparing the staff to stay with her. She had finally fallen asleep late that night, completely exhausted, and was still asleep when I popped in and got the news about 1-1 yesterday. And that seems to be the pattern at the moment. Long horrible periods of her being as she was all day Saturday, followed by an exhausted sleep, followed by short periods of relative calm, then agitation, her being angry and physically going for staff and residents. Then follows a rapid descent back into throwing herself or writhing to the floor, spasms, jerks, sigs of pain, self harm, aggression and her speech going almost completely, with difficulties with eating, drinking and choking thrown in. The only options at that point are the bean bags on the floor and someone with her (sometimes 2 or 3 someones with her) to try and prevent her injuring herself and providing her with cuddles and reassurances (when she will allow it) to try and help her 'ride it out' until exhaustion wins and she finally sleeps. No predicting how long any of these periods will last, or when exactly they will strike. And even during the calm periods, because she can change so suddenly, the CH staff say that there has to be someone watching her specifically because when she flips, it is so quick that injury to either herself or someone else is highly probably without someone literally on stand-by to intervene. It's so cruel and just horrific to witness. And heartbreaking to think what it must be like for Mil to actually experience this awful rollercoaster of symptoms.
The HB manager is actually going to attend the meeting on the 27th, a week today. Nurse L and staff N and I have agreed that if she starts with her patronising nonsense or tries to withdraw support, we will hold each other back! I am hoping that it won't come to that. Hoping that whatever it was, be it Mr Gething's office stepping in or just the sheer weight of evidence, that brought about the change in response, will be enough to keep her reasonable.
My day off today, going to see Mil this morning, get my house straight (It's like a bomb site at the moment, I've barely done anything) and hopefully, chill this afternoon - OH and his man-flu willing! He is ill enough that he has been forced to see the GP and take a week off work, with a throat infection that has resulted in his throat and mouth filled with ulcers and him feeling like he has been run over by a truck. Dau has spent the last several days heavily involved in fundraising for her young workmate and friend, who was so tragcally killed whilst on holiday. Insurance didn't cover the costs for his family of flying out to Spain and bringing him home, so all the workmates at the leisure centres set themselves the task of covering those costs - they have raised around £10,000., almost double what was needed. Youngest has taken part in and worked for every single event, and she has also - off her own back - covered multiple shifts for his closest 3 friends there, who are devastated and needed some time off to cope. There have been a lot of days where she has left the house at around 7 or 8 a.m., and not got back home untill 10 or 11 at night. It was his funeral yesterday, and she set herself the task of 'being there' for his closest friends especially, insisting that the least she can do is 'look out for them'. I am so, so proud of her. And I also think that now the funeral is over, that she will crash, and am preparing myself to have as much patience as possible to deal with the inevitable kick-back.
I need to say the very inadequate words 'Thank you' again, to each and every one of you. I keep saying it, but it doesn't come close to expressing how much I have needed and appreciated the support and hugs and advice. You are all amazing, and I am so grateful xxxxxxx Sending love to you all xxxxxx
Red - that baby is just adorable! What a little sweetheart - she looks full of mischief and so happy. Made me start the day with a big smile too - thank you xxxxx
Straight into the latest for everyone. Starting from this morning, Mil is getting 12 hours 1-1 care per day, paid for by CHC, with the review next Wednesday still going ahead, at which point the Nurses, care staff and consultant will tell the HB Manager if they want it increased to 24/7. I am so, so relieved, after what I saw Mil going through at the weekend - still angry that the manager tried to delay it at the expense of Mil's safety, I guess, but mostly just relieved.
The CH seemed to think that it was the email to Mr Gethings office that did the trick, but having seen the detailed notes that they have been keeping and sending, pages of them per day, I suspect it was a combination of the two factors. Whatever it was, yesterday morning there was an out-of-the-blue phone call to the CH from this manager, and a sudden capitulation. Though the manager did try, at the start of the call, to get the CH to agree to 6 hours per day, the CH manager just said No, that wasn't enough, and the HB manager changed it to the 12 hours without argument (which makes me think she was trying it on!) with the added info that if it needed increasing that would be dealt with at the meeting.
The CH are brining in agency staff today, to make sure the care starts quickly and until they can re-arrange their rota's. The 1-1 care will be provided by the regular staff, staff who know Mil, however, with the agency covering general care on the floor. The CH said that Mil's staff will change every two hours, partly because caring for her 1-1 is pretty intense and exhausting if she is agitated, and partly because Mil still has the tendency to get fixated on one person, if they spend a long period of time with her, and become aggressive towards them. I am so grateful that they have gone to the trouble of arranging things so that Mil's care will be provided by those that know her best. What was really lovely was the way the CH staff greeted me with the news when I went yesterday, they all were as relieved as I was, with big smiles and hugs all round, the odd teary eye, clearly thrilled that (as one put it) finally Mil is being treated like a 'human being and getting the support and care she deserves and needs'.
One of the jobs on my list today is to email the head office of the care home and let them know just how brilliant the staff at the CH, the managers, the nurses, the carers, all of them, have been throughout this whole 'battle'. Its the least I can do, because they really have been amazing.
Thankfully, on Sunday, when I headed back to the CH, prepared to spend the day, I found Mil sitting on a chair in the lounge, no signs of the TD symptoms, speaking far more clearly than she had been doing recently, all smiles and very chilled. She was like a different person, the change from the extremes of Saurday to this calm little lady on Sunday was totally unbelievable! I stayed an hour, went home, did some much needed housework - and fell asleep on the sofa for much of the afternoon. I was so tired. Monday I ploughed into my admin, after arranging with the CH that they would call me if they needed help with Mil. Monday morning started calm and sleepy for her, but by the early afternoon, she had shifted to getting up, banging and yelling and being aggressive, and that had then deteriorated to her being in the same state as Saturday. Once again, all the bean bags and mattresses had been moved from the sensory room to her bedroom floor, and she had been cushioned in the middle of them, with somehow the CH sparing the staff to stay with her. She had finally fallen asleep late that night, completely exhausted, and was still asleep when I popped in and got the news about 1-1 yesterday. And that seems to be the pattern at the moment. Long horrible periods of her being as she was all day Saturday, followed by an exhausted sleep, followed by short periods of relative calm, then agitation, her being angry and physically going for staff and residents. Then follows a rapid descent back into throwing herself or writhing to the floor, spasms, jerks, sigs of pain, self harm, aggression and her speech going almost completely, with difficulties with eating, drinking and choking thrown in. The only options at that point are the bean bags on the floor and someone with her (sometimes 2 or 3 someones with her) to try and prevent her injuring herself and providing her with cuddles and reassurances (when she will allow it) to try and help her 'ride it out' until exhaustion wins and she finally sleeps. No predicting how long any of these periods will last, or when exactly they will strike. And even during the calm periods, because she can change so suddenly, the CH staff say that there has to be someone watching her specifically because when she flips, it is so quick that injury to either herself or someone else is highly probably without someone literally on stand-by to intervene. It's so cruel and just horrific to witness. And heartbreaking to think what it must be like for Mil to actually experience this awful rollercoaster of symptoms.
The HB manager is actually going to attend the meeting on the 27th, a week today. Nurse L and staff N and I have agreed that if she starts with her patronising nonsense or tries to withdraw support, we will hold each other back! I am hoping that it won't come to that. Hoping that whatever it was, be it Mr Gething's office stepping in or just the sheer weight of evidence, that brought about the change in response, will be enough to keep her reasonable.
My day off today, going to see Mil this morning, get my house straight (It's like a bomb site at the moment, I've barely done anything) and hopefully, chill this afternoon - OH and his man-flu willing! He is ill enough that he has been forced to see the GP and take a week off work, with a throat infection that has resulted in his throat and mouth filled with ulcers and him feeling like he has been run over by a truck. Dau has spent the last several days heavily involved in fundraising for her young workmate and friend, who was so tragcally killed whilst on holiday. Insurance didn't cover the costs for his family of flying out to Spain and bringing him home, so all the workmates at the leisure centres set themselves the task of covering those costs - they have raised around £10,000., almost double what was needed. Youngest has taken part in and worked for every single event, and she has also - off her own back - covered multiple shifts for his closest 3 friends there, who are devastated and needed some time off to cope. There have been a lot of days where she has left the house at around 7 or 8 a.m., and not got back home untill 10 or 11 at night. It was his funeral yesterday, and she set herself the task of 'being there' for his closest friends especially, insisting that the least she can do is 'look out for them'. I am so, so proud of her. And I also think that now the funeral is over, that she will crash, and am preparing myself to have as much patience as possible to deal with the inevitable kick-back.
I need to say the very inadequate words 'Thank you' again, to each and every one of you. I keep saying it, but it doesn't come close to expressing how much I have needed and appreciated the support and hugs and advice. You are all amazing, and I am so grateful xxxxxxx Sending love to you all xxxxxx
Great news. Almost want to celebrate, but that would be wrong because of why she needs this 1:1 and she should have got it at the start, so to feel like celebrating is just so wrong in so many ways. You all Should never have been in position to cause a of feeling of celebration that she has 1:1 - again correct words, what I mean, not being written by me....
Just relieved that she has 1:1 and the amazing staff must have been a part of that change of mind. I too would definitely want to let people know about their high level of care, going beyond their jobs
Your daughter is certainly someone to be proud of. She seems to have a big heart. Seems to me that she takes after you both in a lot of ways and that bodes well for the future for you all.
Squishy hugs
Just relieved that she has 1:1 and the amazing staff must have been a part of that change of mind. I too would definitely want to let people know about their high level of care, going beyond their jobs
Your daughter is certainly someone to be proud of. She seems to have a big heart. Seems to me that she takes after you both in a lot of ways and that bodes well for the future for you all.
Squishy hugs
I am so glad that your MIL has got the care she needs.
Am still thinking rude words about that manager
((((hugs))))) to the mac family, who all sound like they need them
Am still thinking rude words about that manager
((((hugs))))) to the mac family, who all sound like they need them
So glad to read this. Well done Ann - yet again you seem to have won the battle for MiL though it is criminal that all of you should have been put through this. Lucky MiL to have you on her side.
Hope you get your chill time, more important than dust and muddle clearing.
Take care, hugs xx
Hope you get your chill time, more important than dust and muddle clearing.
Take care, hugs xx
So relieved for you all Ann. No wonder you fell asleep for hours, you must be exhausted.
Hope OH feels better soon, that nasty bug seems to be doing the rounds here and I would imagine the worry over his Mum is making it worse.
Well done to your amazing daughter too.
Have to agree with canary over the manager!
Hope OH feels better soon, that nasty bug seems to be doing the rounds here and I would imagine the worry over his Mum is making it worse.
Well done to your amazing daughter too.
Have to agree with canary over the manager!
Morning all,
Ann, thank you so much for the update. I am relieved and delighted that the manager has finally seen sense and authorised the 1:1 care that MIL so clearly needs.
The CH staff sound wonderful, I am very glad that MIL is being cared for (in every sense of the word) so well. I am sure Head Office would love to hear the praise - we are sometimes very good at complaining but forget to give praise where it is due
Young Miss Mac has really stepped up to the plate regarding her late colleague. Such a terrible thing for all concerned. As you say, she will probably 'crash' now, I just hope her behaviour towards you isn't too awful She is clearly a good girl at heart - how could she not be with such amazing parents?!
Poor Mr Mac, he is clearly unwell But please make sure that you are looking after yourself too Ann - cos no-one else is doing it!
Red, what a lovely photo! I don't do babies - don't dislike them but couldn't eat a whole one - but that did make me smile. 3 months old already? Where does the time go?!
Sending lots of (((hugs))) to all.
Ann, thank you so much for the update. I am relieved and delighted that the manager has finally seen sense and authorised the 1:1 care that MIL so clearly needs.
The CH staff sound wonderful, I am very glad that MIL is being cared for (in every sense of the word) so well. I am sure Head Office would love to hear the praise - we are sometimes very good at complaining but forget to give praise where it is due
Young Miss Mac has really stepped up to the plate regarding her late colleague. Such a terrible thing for all concerned. As you say, she will probably 'crash' now, I just hope her behaviour towards you isn't too awful
She is clearly a good girl at heart - how could she not be with such amazing parents?!Poor Mr Mac, he is clearly unwell
But please make sure that you are looking after yourself too Ann - cos no-one else is doing it!Red, what a lovely photo! I don't do babies - don't dislike them but couldn't eat a whole one - but that did make me smile. 3 months old already? Where does the time go?!
Sending lots of (((hugs))) to all.
Morning all,
Oh, 2jays - I know exactly what you mean! When I got the news, I almost felt like punching the air and shouting 'Yes', but that was eclipsed straight away by the feeling of mainly relief, with a good chunk of sadness that this level of care is needed in the first place, and a smattering of disgust and anger that it took such a battle to get it.
However, we are not out of the woods yet, it seems. Late yesterday afternoon, I got a phone call. The woman on the end identified herself as the HB manager - but threw me into absolute confusion because she greeted me as though I was her new BFF! For a minute I couldn't place the name with this cheery voice that told me 'Oh Ann, it's me . . . A********', as though she was an old friend who's voice I'd failed to recognise! Talk about odd, especially considering the last phone call I'd had with her, and what I'd written about her in the email to Mr Gethings office.
She started by telling me that Mil has 1-1 - and you know, it was said as though she was absolutely thrilled that it had been awarded, as if it wasn't her that had delayed and fudged about Mil receiving it in the first place. I told her that I knew that the day before, and that I had also visited Mil earlier in the day, and seen for myself that it meant Mil was safer. She wittered on but basically, picking through the gushing, the assurances that I could phone her 'at any time' if I had any concerns (and she gave me her direct phone line number for me to do so - she may regret that) , the following emerged. Firstly, she won't be at the meeting next week (despite her teliing the CH she would be, and saying to them that this would be about them letting her know if the 12 x 1-1 hours per day was enough) - she said that no, the meeting next week is a 'medical review' with Mils new consultant, Dr S, but then she went on to imply that she knew nothing about it anyway, a bit of a strange contradiction. She also told me that she had arranged for her 'in house' OT to visit Mil with a view to finding 'suitable seating' for her, and that she - the HB manager - would also be on that visit. Now, 'in house' implies to me that whoever this OT is, they will be singing from the same hymn sheet as this manager, which (along with knowing that the manager intends to be there too) is far from reassuring. The CH have already tried Mil on a variety of different chairs, recliners, bucket recliners, deep arm chairs, upright armchairs - you name it, they have tried it. Does this woman really think that if any had been effective in stopping Mil pushing herself or writhing herself out of them, and ending up on the floor, that it wouldn't be being used already? That approached was considered and tried before 1-1 was even mentioned.
She asked me how I felt about the 1-1 being in place then. Was I pleased??? I told her that I was relieved - and would have been more pleased if it hadn't taken so damn long to sort out, that all of us, her family, the CH had spent far too long worried sick about the risks whilst waiting. She then said that they had moved 'as quickly as they could, considering the request was 'only made at the beginning of June'! When I pointed out that actually, the CH had repeatedly asked for support and 1-1 long before that, going back to December in fact, she said that the CH 'hadn't asked her directly'. I pointed out that they had followed the correct channels by going through the Mental Health Team and Mr R - and asked shouldn't the MHT and Mr R have reported this to her and the CHC board? Er - yes they should have - obviously, she said, it was a 'failure in communication that she would have to look in to'.
She then went on to mention quite pointedly that Mil had had 'a lot' of chest infections and UTI's , and that in fact, she was on anti-biotics at the moment. Obviously, this is the preparation for her arguing that infections are responsible for Mil's behaviour. So I pointed out right back that if the notes were checked, that she would find numberous occasions where Mil has been free from infection and yet the behaviours have still been occuring. And that if she checked with the CH and the GP, she would discover that actually, she has no sign of infection at the moment, that the GP has prescribed them as a 'precaution', just in case her recent decline in health could be improved by trying her with them - and that it has been agreed that if there is no improvement (and so far, there isn't) that she will not be prescribed them again. I honestly am convinced that she knew all this, before I said it - this was just her, trying it on again, testing the waters to see if she could get away with that argument as an excuse for withdrawing 1-1.
She swiftly moved on to say that she was also getting the 'falls team' out to visit Mil. And followed that up, just as quickly, with the info that she and the infamous Mr R (Mil's old consultant - and Spamar, btw - I meant to say this earlier - you are right, he is DR R - its me who calls him 'Mr' to distinguish him from Mils GP, who is also Dr R ) would be holding a 'review' for Mil, next month. I pointed out to her that he was no longer Mil's consultant. She told me he 'knows her best'. So I pointed out all the issues that the CH had had with him, how long they had been asking him for help with Mil and getting no response, and added the snippet about him phoning me at home and asking me to speak to Mil's GP, as the GP 'wouldn't listen' to him. That last was obviously news to her, and it did make her falter for a minute, before she suddenly started raving about Mil's new consultant. I suspect that was a distraction However, she she still said that she and Mr R would be holding this review, obviously another CHC review, though she didn't use that term exactly. She also slipped in that she had now personally taken 'Mil's case' on. I hope she didn't expect me to greet that news with delight, because for obvious reasons, I am not thrilled at that news.
I told her I would be at that review too, and she gave me a date that I can't make. Fair enough, she did then change it when I asked. I also asked her for the notes from the meeting where the hospital consultant had told me that he believed Mil had suffered brain damage as a result of over medication - I never did get the notes from that, you see. And then, with more pleas to phone her 'straight away' if there was 'anything, anything at all worrying me' (she even slipped in for me to contact her if there was anything at the CH that I was concerned about, to call her?) she eventually got off the phone. But only after I reminded her that I have the video and photographs and how they would 'convince anyone that I showed them to' about how essential the need for 1-1 is. That caused her to stutter a bit too.
I phoned the CH. Because I'd been there earlier in the day, and I knew that as far as they were concerned, this manager had said she would be at the meeting next week, that Mr R no longer had anything to do with Mil's care and that nothing had been communicated to them about any falls team or OT visiting Mil. They knew nothing about a new CHC review either. The manager at the CH instantly came to the same conclusion that I had - this is nothing more than an attempt to find an alternative to paying for 1-1 care for Mil.
Oh, 2jays - I know exactly what you mean! When I got the news, I almost felt like punching the air and shouting 'Yes', but that was eclipsed straight away by the feeling of mainly relief, with a good chunk of sadness that this level of care is needed in the first place, and a smattering of disgust and anger that it took such a battle to get it.
However, we are not out of the woods yet, it seems. Late yesterday afternoon, I got a phone call. The woman on the end identified herself as the HB manager - but threw me into absolute confusion because she greeted me as though I was her new BFF! For a minute I couldn't place the name with this cheery voice that told me 'Oh Ann, it's me . . . A********', as though she was an old friend who's voice I'd failed to recognise! Talk about odd, especially considering the last phone call I'd had with her, and what I'd written about her in the email to Mr Gethings office.
She started by telling me that Mil has 1-1 - and you know, it was said as though she was absolutely thrilled that it had been awarded, as if it wasn't her that had delayed and fudged about Mil receiving it in the first place. I told her that I knew that the day before, and that I had also visited Mil earlier in the day, and seen for myself that it meant Mil was safer. She wittered on but basically, picking through the gushing, the assurances that I could phone her 'at any time' if I had any concerns (and she gave me her direct phone line number for me to do so - she may regret that) , the following emerged. Firstly, she won't be at the meeting next week (despite her teliing the CH she would be, and saying to them that this would be about them letting her know if the 12 x 1-1 hours per day was enough) - she said that no, the meeting next week is a 'medical review' with Mils new consultant, Dr S, but then she went on to imply that she knew nothing about it anyway, a bit of a strange contradiction. She also told me that she had arranged for her 'in house' OT to visit Mil with a view to finding 'suitable seating' for her, and that she - the HB manager - would also be on that visit. Now, 'in house' implies to me that whoever this OT is, they will be singing from the same hymn sheet as this manager, which (along with knowing that the manager intends to be there too) is far from reassuring. The CH have already tried Mil on a variety of different chairs, recliners, bucket recliners, deep arm chairs, upright armchairs - you name it, they have tried it. Does this woman really think that if any had been effective in stopping Mil pushing herself or writhing herself out of them, and ending up on the floor, that it wouldn't be being used already? That approached was considered and tried before 1-1 was even mentioned.
She asked me how I felt about the 1-1 being in place then. Was I pleased??? I told her that I was relieved - and would have been more pleased if it hadn't taken so damn long to sort out, that all of us, her family, the CH had spent far too long worried sick about the risks whilst waiting. She then said that they had moved 'as quickly as they could, considering the request was 'only made at the beginning of June'! When I pointed out that actually, the CH had repeatedly asked for support and 1-1 long before that, going back to December in fact, she said that the CH 'hadn't asked her directly'. I pointed out that they had followed the correct channels by going through the Mental Health Team and Mr R - and asked shouldn't the MHT and Mr R have reported this to her and the CHC board? Er - yes they should have - obviously, she said, it was a 'failure in communication that she would have to look in to'.
She then went on to mention quite pointedly that Mil had had 'a lot' of chest infections and UTI's , and that in fact, she was on anti-biotics at the moment. Obviously, this is the preparation for her arguing that infections are responsible for Mil's behaviour. So I pointed out right back that if the notes were checked, that she would find numberous occasions where Mil has been free from infection and yet the behaviours have still been occuring. And that if she checked with the CH and the GP, she would discover that actually, she has no sign of infection at the moment, that the GP has prescribed them as a 'precaution', just in case her recent decline in health could be improved by trying her with them - and that it has been agreed that if there is no improvement (and so far, there isn't) that she will not be prescribed them again. I honestly am convinced that she knew all this, before I said it - this was just her, trying it on again, testing the waters to see if she could get away with that argument as an excuse for withdrawing 1-1.
She swiftly moved on to say that she was also getting the 'falls team' out to visit Mil. And followed that up, just as quickly, with the info that she and the infamous Mr R (Mil's old consultant - and Spamar, btw - I meant to say this earlier - you are right, he is DR R - its me who calls him 'Mr' to distinguish him from Mils GP, who is also Dr R
) would be holding a 'review' for Mil, next month. I pointed out to her that he was no longer Mil's consultant. She told me he 'knows her best'. So I pointed out all the issues that the CH had had with him, how long they had been asking him for help with Mil and getting no response, and added the snippet about him phoning me at home and asking me to speak to Mil's GP, as the GP 'wouldn't listen' to him. That last was obviously news to her, and it did make her falter for a minute, before she suddenly started raving about Mil's new consultant. I suspect that was a distraction However, she she still said that she and Mr R would be holding this review, obviously another CHC review, though she didn't use that term exactly. She also slipped in that she had now personally taken 'Mil's case' on. I hope she didn't expect me to greet that news with delight, because for obvious reasons, I am not thrilled at that news.I told her I would be at that review too, and she gave me a date that I can't make. Fair enough, she did then change it when I asked. I also asked her for the notes from the meeting where the hospital consultant had told me that he believed Mil had suffered brain damage as a result of over medication - I never did get the notes from that, you see. And then, with more pleas to phone her 'straight away' if there was 'anything, anything at all worrying me' (she even slipped in for me to contact her if there was anything at the CH that I was concerned about, to call her?) she eventually got off the phone. But only after I reminded her that I have the video and photographs and how they would 'convince anyone that I showed them to' about how essential the need for 1-1 is. That caused her to stutter a bit too.
I phoned the CH. Because I'd been there earlier in the day, and I knew that as far as they were concerned, this manager had said she would be at the meeting next week, that Mr R no longer had anything to do with Mil's care and that nothing had been communicated to them about any falls team or OT visiting Mil. They knew nothing about a new CHC review either. The manager at the CH instantly came to the same conclusion that I had - this is nothing more than an attempt to find an alternative to paying for 1-1 care for Mil.
Whoops - pressed post before finishing!
The CH manager wasn't impressed. As she said, before asking for 1-1 support for Mil, they had investigated and tried so many alternatives. They had looked at seating, at finding a type of chair that would prevent Mil either inadvertantly writhing to, or deliberately throwing herself to the floor. There isn't anything. The writhing and jerking is so violent that she has come out of every single chair they have tried when the TD symptoms are bad, ditto her strength and determination are so strong that she has found a way to throw herself from every seat they have tried when she is agitated. Recliners and bucket seats add to the risk, as an injury is likely to be more serious if she is going over the side of a seat because it is reclined back - something she has attempted to do when they have tried this style of seating, only the intervention of staff has prevented her falling. Because she still has the ability to get up and walk, on occasion, and because of the potential for causing her distress, restraint is absolutely not appropriate. If she can lift her legs to throw them over the side of a chair, she can do the same with bed rails, meaning she can still get off a bed with them in place - just she would have further to fall and there is the added risk of injury due to her bashing her legs against metal rails too. Cushions, padding, slip mats, raising her legs - been tried. If there had been a type of seating, or a stratagy to stop her ending up on the floor and prevent the risk of injury, it would have been used - the whole point of this has been to keep her (and others) safe, and I really don't think that there is anything that the CH haven't tried. Distraction or re-direction doesn't work, particularly when its the TD symptoms causing the writhing and falls risk - she has no control at all over that. And no seating exists that will make any difference to the other issues - the violence, the risk of injury to staff and residents - unless they propose pretty much tying her into a chair, despite the fact that her mobility and the potential for distress makes that a big fat No. No type of seat will stop the choking risk if she vomits. It won't stop her screaming and upsetting the other residents in the lounge, it won't stop her pulling at her clothes and exposing herself. Unless she is tied down to a bed, bed rails won't stop her falling out of it. 1-1 is very much the last resort. And, at the end of the day, what the CHC board don't seem to understand is that all of us would much prefer that it wasn't necessary, that she wasn't in this awful state that has made it essential.
Mr R's re-involvement is another cause for concern. His last take on Mil was that if medication didn't work, then the 'only solution' was that Mil would have to be placed in an 'alternative setting' . As the CH said, the only 'alternative setting' is a secure ward, something that we, they and the new consultant believe would cause her incredible and unacceptable distress. But there is concern that he will argue for that, and if the manager see's that as a way to save CHC costs, she may push for it too, under the guise of Mr R, having been Mil's consultant for over a year, knows what is 'best' for her.
So - Mil has the care for now, but it looks like it is not going to be easy to retain it for her. I am so weary and fed up of having to be ready to fight. And exhausted with the constant going from relief that an issue seems to have sorted, to sudden misery when you find out that actually, no - it is far from being sorted at all. It's mental and emotional torture. I am hoping that the new consultant, who everyone thinks so highly of, will agree to attend the CHC review too - I think we need someone with as much 'clout' as Mr R, to speak on Mil's behalf. I'll ask at the meeting next week.
I visited Mil yeserday morning, after phoning and being told that she was calm at the moment. She had been agitated during the morning. In between her obs yesterday morning, before the 1-1 kicked in at 10a.m., Mil had removed her clothing and pad, and smeared herself and the bean bags with faeces. This is the 3rd time this has happened in the last 5 days, a new issue and one that leaves her very distressed and agitated. Just when you think dementia has taken every scrap of dignity from her, that it can't take anything else, it throws something else into the mix.
Twice in the last week, the topic of fish and chips had come up during visits to Mil, and each time she had responded with obvious pleasure at the idea. So after finding out that she was calm (and therefore more likely to eat without choking) I turned up at lunch time with fish, chips and mushy peas for her. The portion was huge, so I donated half of it to another resident, and chopped the rest finely, before giving it to Mil for her lunch. It took over 50 minutes for her to eat it, but boy - did she enjoy it. It was so nice to be able to give her something that brought her obvious pleasure. It may not be so well received if I try it again (though for some reason she is currently more likely to eat for me than anyone else) but I am so glad she has had the enjoyment of eating her favourite take away at least one more time. I did note that she was 'pouching' on several occasions whilst eating though - giving her a drink helped to overcome this, and I noted it in the hourly log that is being kept, and which I've been asked to contribute to when I visit. She remained calm for most of the 1 1/2 hours I was there, just one occasion when she suddenly sat more upright, pointed to the end of the room and gave someone or something only she could see a really angry telling off - or at least that's what it sounded like, couldn't make out any words, it was just the tone that indicated she was cross.
If at the CHC review, they come up with a suggestion that we haven't tried, and has the potential to help her, then I will agree to it - providing the 1-1 care is NOT removed whilst it is being tried. This isn't about insisting on high level care for the sake of it, it's about just getting whats needed to keep her safe and comfortable. If there is an alternative that works just as well as 1-1, why wouldn't we agree to it? The HB and their manager don't seem to realise this, they just can't see the person at the heart of it all. Its all about the money for them.
Love to you all, as always xxxxx
The CH manager wasn't impressed. As she said, before asking for 1-1 support for Mil, they had investigated and tried so many alternatives. They had looked at seating, at finding a type of chair that would prevent Mil either inadvertantly writhing to, or deliberately throwing herself to the floor. There isn't anything. The writhing and jerking is so violent that she has come out of every single chair they have tried when the TD symptoms are bad, ditto her strength and determination are so strong that she has found a way to throw herself from every seat they have tried when she is agitated. Recliners and bucket seats add to the risk, as an injury is likely to be more serious if she is going over the side of a seat because it is reclined back - something she has attempted to do when they have tried this style of seating, only the intervention of staff has prevented her falling. Because she still has the ability to get up and walk, on occasion, and because of the potential for causing her distress, restraint is absolutely not appropriate. If she can lift her legs to throw them over the side of a chair, she can do the same with bed rails, meaning she can still get off a bed with them in place - just she would have further to fall and there is the added risk of injury due to her bashing her legs against metal rails too. Cushions, padding, slip mats, raising her legs - been tried. If there had been a type of seating, or a stratagy to stop her ending up on the floor and prevent the risk of injury, it would have been used - the whole point of this has been to keep her (and others) safe, and I really don't think that there is anything that the CH haven't tried. Distraction or re-direction doesn't work, particularly when its the TD symptoms causing the writhing and falls risk - she has no control at all over that. And no seating exists that will make any difference to the other issues - the violence, the risk of injury to staff and residents - unless they propose pretty much tying her into a chair, despite the fact that her mobility and the potential for distress makes that a big fat No. No type of seat will stop the choking risk if she vomits. It won't stop her screaming and upsetting the other residents in the lounge, it won't stop her pulling at her clothes and exposing herself. Unless she is tied down to a bed, bed rails won't stop her falling out of it. 1-1 is very much the last resort. And, at the end of the day, what the CHC board don't seem to understand is that all of us would much prefer that it wasn't necessary, that she wasn't in this awful state that has made it essential.
Mr R's re-involvement is another cause for concern. His last take on Mil was that if medication didn't work, then the 'only solution' was that Mil would have to be placed in an 'alternative setting' . As the CH said, the only 'alternative setting' is a secure ward, something that we, they and the new consultant believe would cause her incredible and unacceptable distress. But there is concern that he will argue for that, and if the manager see's that as a way to save CHC costs, she may push for it too, under the guise of Mr R, having been Mil's consultant for over a year, knows what is 'best' for her.
So - Mil has the care for now, but it looks like it is not going to be easy to retain it for her. I am so weary and fed up of having to be ready to fight. And exhausted with the constant going from relief that an issue seems to have sorted, to sudden misery when you find out that actually, no - it is far from being sorted at all. It's mental and emotional torture. I am hoping that the new consultant, who everyone thinks so highly of, will agree to attend the CHC review too - I think we need someone with as much 'clout' as Mr R, to speak on Mil's behalf. I'll ask at the meeting next week.
I visited Mil yeserday morning, after phoning and being told that she was calm at the moment. She had been agitated during the morning. In between her obs yesterday morning, before the 1-1 kicked in at 10a.m., Mil had removed her clothing and pad, and smeared herself and the bean bags with faeces. This is the 3rd time this has happened in the last 5 days, a new issue and one that leaves her very distressed and agitated. Just when you think dementia has taken every scrap of dignity from her, that it can't take anything else, it throws something else into the mix.
Twice in the last week, the topic of fish and chips had come up during visits to Mil, and each time she had responded with obvious pleasure at the idea. So after finding out that she was calm (and therefore more likely to eat without choking) I turned up at lunch time with fish, chips and mushy peas for her. The portion was huge, so I donated half of it to another resident, and chopped the rest finely, before giving it to Mil for her lunch. It took over 50 minutes for her to eat it, but boy - did she enjoy it. It was so nice to be able to give her something that brought her obvious pleasure. It may not be so well received if I try it again (though for some reason she is currently more likely to eat for me than anyone else) but I am so glad she has had the enjoyment of eating her favourite take away at least one more time. I did note that she was 'pouching' on several occasions whilst eating though - giving her a drink helped to overcome this, and I noted it in the hourly log that is being kept, and which I've been asked to contribute to when I visit. She remained calm for most of the 1 1/2 hours I was there, just one occasion when she suddenly sat more upright, pointed to the end of the room and gave someone or something only she could see a really angry telling off - or at least that's what it sounded like, couldn't make out any words, it was just the tone that indicated she was cross.
If at the CHC review, they come up with a suggestion that we haven't tried, and has the potential to help her, then I will agree to it - providing the 1-1 care is NOT removed whilst it is being tried. This isn't about insisting on high level care for the sake of it, it's about just getting whats needed to keep her safe and comfortable. If there is an alternative that works just as well as 1-1, why wouldn't we agree to it? The HB and their manager don't seem to realise this, they just can't see the person at the heart of it all. Its all about the money for them.
Love to you all, as always xxxxx
