Hello everyone,
Thank you for all the responses, they help me beyond measure. There have been times (and certainly this is one of them) , when we have been faced with responses and attitudes from consultants, hospital care, adult services, the Health Board or whoever, where I have found myself wondering if we are the ones' being unreasonable here? You know, you tell them, give them 'evidence' of a situation, whether it be about the negative impact of a medication that's been tried before or (as is the case now) about how someone has repeatedly injured staff and attacked residents (amongst a whole list of other issues) and you think that its enough to guarantee a particular response, what you would think of as the common sense, reasonable response. And instead you get shot down, or ignored or refused and have to fight. It's a very surreal situation, makes you think that either the world has gone mad - or you have. To read the responses and suport from all of you quite literally helps me keep sane, reassures me that it isn't me or us that are out of step here. So thank you, yet again xxxxx
I will be phoning the health board tomorrow, and asking to speak to the manager who want's more evidence. At the review, the chap actually said if he didn't act to get something in place, under the circumstances and given all the evidence from the staff, we would be quite 'justified' in taking legal action, in suing, the health board, if anything happened to Mil or anyone else as a result of the issues and risks that had ben raised. I have no hesitation in making it clear that it's an option we will take. And I will follow that up with an email, creating a paper trail. The local MP, councillors, the big guns, and even the press will be the next step. I am dreading dealing with all this more than I can say, I feel so deflated, hopeless and tired, but there really doesn't seem to be any choice. I have no idea how I am going to find the time - Tuesday/Wednesday next week I have to attend a 'mandatory' two days of meetings in Swansea, apart from anything else - but I'll have to squeeze it in, somehow.
Son and his GF, oldest and her BF, are now home, and yesterday afternoon we went to see Mil. N, the senior carer from the meeting, who spoke so eloquently and passionately about Mil and her needs, met us as we came in. I asked her what did they think of the response from the manager at the health board? She said that no one from the HB had been in touch with the CH! So, I told her about the demand for 'more evidence' - and she pretty much blew. She asked me to come with her to let the nurse know, so while the kids headed in to see their Nan, I followed her to speak to the nurse. N was actually shaking with rage, and the nurse wasn't far behind. As N said, they had stayed till nearly 8.30, in order to photocopy all the 'evidence' and the resulting stack of paperwork was several inches thick , hundreds of pages. How much damn evidence do they need? N was nearly in tears - and made me come very close to crying too - she was so upset on Mil's behalf. She just couldn't believe, she said, that they could treat a human being, a lady who was sufferring so horrendously, so badly. The nurse was just 'stunned', she said. She hadn't been at the meeting (she was supposed to be, but thanks to the chap being so late, she had had to leave as she hadn't been able to sort out last minute child care for her little boy) but she had felt positive - as had the other staff - that Mil was going to get the support and her needs met, from the reports from N and Nurse L, of what the chap at the meeting had said. And as I said - she was angry too. She said she would be phoning the HB on Monday too, I have no doubt that it won't be just me scorching ears. Its to be hoped that N doesn't get on the phone to them, actually - there was more than the odd extremely rude description and insult included when she spoke of this manager. I just appreciated her all the more for it - not just me that was left swearing, and seeing N so indignant and horrified on Mil's behalf was another reassurance that we are not wrong or being overly-demanding about all this.
In to Mil and the kids. Mil was in her room, crash mats and alarm pads surrounding her, 15 minute obs. I'm guessing that - as always - the lounge had been tried and she had been too agitated to be able to remain there. Whether it was screaming distress or hitting out and attacking, I don't know - but it would have been one or the other. At the point we went in, she was tending to be very sleepy, though she roused a fair bit on seeing the kids. We got a lot of unintelligable mumbling, and the odd clear sentence - including her again surprsing us all when son asked how she was feeling? 'With my hands' she replied, then gave a wicked laugh. One of her stock answers from years ago, one we haven't heard for a long time. Oldest gave her a hand massage, they took turns giving her frequent sips of drinks, and oldest also fed her one of the jelly pots I'd brought in for her. Although she is now being given meds to ease the nausea, the sickness is still an issue, so her favourite trifle, chocolate mousse and even cream of leek soup are off the menu for now. And all the while we were there, she had the facial 'contortions' with her tongue poking in and out and twisting her jaw and mouth, she squirmed and wriggled and jerked and writhed, and I lost count of how many times we re-positioned her on her chair to stop her landing on the floor. Quite a few seemingly deliberate attempts to push herself off the chair and onto the floor too. And me feeling quite emotional seeing oldest two with their Nan - she didn't know who they were, not their names and not how she knew them - but she did know there was a connection, and there were lots of cuddles and her holding (very) tightly to their hands. They were so gentle with her, and so affectionate - it was actually really lovely, and I ended up taking pics of them all together - not to share, because Mil looks so awful and pitiful, I don't think it would be right at this time - for now, they are just for 'later', for us.
We stayed about an hour and a half. Son, I think was a bit upset at how she was, (the TD has been confirmed by the consultant and is in her records btw), and it was the first time he had seen the symptoms that the TD has caused. It was all a bit much, because it is pretty distressing to witness, and so I think it was right to leave at that point. But they want to go back this morning, to see her, before we have an early-ish Sunday lunch, and they both have to head back home ready for work tomorrow morning.
In fact, I need to get the slow roast lamb for the carnivours on now, so I'd better get moving. I also have 4 doggys who are surrounding me with pitiful stares, making it clear that they are hopeful of a fuss and a treat! (My new 'granddog' is adorable - OH and both daughters are besotted with her!).
I keep saying 'Thank you' to you all, but it isn't enough. Much love to you all xxxxx
Thank you for all the responses, they help me beyond measure. There have been times (and certainly this is one of them) , when we have been faced with responses and attitudes from consultants, hospital care, adult services, the Health Board or whoever, where I have found myself wondering if we are the ones' being unreasonable here? You know, you tell them, give them 'evidence' of a situation, whether it be about the negative impact of a medication that's been tried before or (as is the case now) about how someone has repeatedly injured staff and attacked residents (amongst a whole list of other issues) and you think that its enough to guarantee a particular response, what you would think of as the common sense, reasonable response. And instead you get shot down, or ignored or refused and have to fight. It's a very surreal situation, makes you think that either the world has gone mad - or you have. To read the responses and suport from all of you quite literally helps me keep sane, reassures me that it isn't me or us that are out of step here. So thank you, yet again xxxxx
I will be phoning the health board tomorrow, and asking to speak to the manager who want's more evidence. At the review, the chap actually said if he didn't act to get something in place, under the circumstances and given all the evidence from the staff, we would be quite 'justified' in taking legal action, in suing, the health board, if anything happened to Mil or anyone else as a result of the issues and risks that had ben raised. I have no hesitation in making it clear that it's an option we will take. And I will follow that up with an email, creating a paper trail. The local MP, councillors, the big guns, and even the press will be the next step. I am dreading dealing with all this more than I can say, I feel so deflated, hopeless and tired, but there really doesn't seem to be any choice. I have no idea how I am going to find the time - Tuesday/Wednesday next week I have to attend a 'mandatory' two days of meetings in Swansea, apart from anything else - but I'll have to squeeze it in, somehow.
Son and his GF, oldest and her BF, are now home, and yesterday afternoon we went to see Mil. N, the senior carer from the meeting, who spoke so eloquently and passionately about Mil and her needs, met us as we came in. I asked her what did they think of the response from the manager at the health board? She said that no one from the HB had been in touch with the CH! So, I told her about the demand for 'more evidence' - and she pretty much blew. She asked me to come with her to let the nurse know, so while the kids headed in to see their Nan, I followed her to speak to the nurse. N was actually shaking with rage, and the nurse wasn't far behind. As N said, they had stayed till nearly 8.30, in order to photocopy all the 'evidence' and the resulting stack of paperwork was several inches thick , hundreds of pages. How much damn evidence do they need? N was nearly in tears - and made me come very close to crying too - she was so upset on Mil's behalf. She just couldn't believe, she said, that they could treat a human being, a lady who was sufferring so horrendously, so badly. The nurse was just 'stunned', she said. She hadn't been at the meeting (she was supposed to be, but thanks to the chap being so late, she had had to leave as she hadn't been able to sort out last minute child care for her little boy) but she had felt positive - as had the other staff - that Mil was going to get the support and her needs met, from the reports from N and Nurse L, of what the chap at the meeting had said. And as I said - she was angry too. She said she would be phoning the HB on Monday too, I have no doubt that it won't be just me scorching ears. Its to be hoped that N doesn't get on the phone to them, actually - there was more than the odd extremely rude description and insult included when she spoke of this manager. I just appreciated her all the more for it - not just me that was left swearing, and seeing N so indignant and horrified on Mil's behalf was another reassurance that we are not wrong or being overly-demanding about all this.
In to Mil and the kids. Mil was in her room, crash mats and alarm pads surrounding her, 15 minute obs. I'm guessing that - as always - the lounge had been tried and she had been too agitated to be able to remain there. Whether it was screaming distress or hitting out and attacking, I don't know - but it would have been one or the other. At the point we went in, she was tending to be very sleepy, though she roused a fair bit on seeing the kids. We got a lot of unintelligable mumbling, and the odd clear sentence - including her again surprsing us all when son asked how she was feeling? 'With my hands' she replied, then gave a wicked laugh. One of her stock answers from years ago, one we haven't heard for a long time. Oldest gave her a hand massage, they took turns giving her frequent sips of drinks, and oldest also fed her one of the jelly pots I'd brought in for her. Although she is now being given meds to ease the nausea, the sickness is still an issue, so her favourite trifle, chocolate mousse and even cream of leek soup are off the menu for now. And all the while we were there, she had the facial 'contortions' with her tongue poking in and out and twisting her jaw and mouth, she squirmed and wriggled and jerked and writhed, and I lost count of how many times we re-positioned her on her chair to stop her landing on the floor. Quite a few seemingly deliberate attempts to push herself off the chair and onto the floor too. And me feeling quite emotional seeing oldest two with their Nan - she didn't know who they were, not their names and not how she knew them - but she did know there was a connection, and there were lots of cuddles and her holding (very) tightly to their hands. They were so gentle with her, and so affectionate - it was actually really lovely, and I ended up taking pics of them all together - not to share, because Mil looks so awful and pitiful, I don't think it would be right at this time - for now, they are just for 'later', for us.
We stayed about an hour and a half. Son, I think was a bit upset at how she was, (the TD has been confirmed by the consultant and is in her records btw), and it was the first time he had seen the symptoms that the TD has caused. It was all a bit much, because it is pretty distressing to witness, and so I think it was right to leave at that point. But they want to go back this morning, to see her, before we have an early-ish Sunday lunch, and they both have to head back home ready for work tomorrow morning.
In fact, I need to get the slow roast lamb for the carnivours on now, so I'd better get moving. I also have 4 doggys who are surrounding me with pitiful stares, making it clear that they are hopeful of a fuss and a treat! (My new 'granddog' is adorable - OH and both daughters are besotted with her!).
I keep saying 'Thank you' to you all, but it isn't enough. Much love to you all xxxxx
