So bizarre !
- Thread starter Ann Mac
- Start date
Ann - so sorry to hear the saga is ongoing, it really does beggar belief. The request for more proof is just obfuscation I'm sure and lack of money is at the root of this, the health board has been in special measures for years - the news report from Feb below doesn't make good reading.
https://www.bbc.co.uk/news/uk-wales-politics-42905335
Hope you're not too exhausted from your work trip and can relax this weekend. Thunderstorms forecast for this afternoon. Was quite overcast and cool when we were at Alyn waters yesterday, and much warmer here.
Popped round to take mum's food to her, and as it often the case now she was tucked up in bed asleep, I feel guilty for not waking her up, but hate to disturb her so just leave her asleep. If I do wake her she is so deaf, any conversation it hard, so never sure if it is deafness or lack of comprehension, think it used to be more of the former and now more the latter.
I read her care plan, and she is often refusing to have a meal heated up in the evening, I have spoken to the care team about this, and they don't seem to see a problem and tell me she is eating well. I have worked out for a while she is eating less than one ready meal every 2 days, as I know how many I buy. Unusually this time, she had pots of creme caramel still in fridge, either I bought more than ususal or she is eating a lot less - I know she normally eats these first, as she likes them so much. Not sure what to do, the care team really like her, including her designated senior, have been there since she moved in over 4 years ago, so they do know her well, so guess it is a natural progression of the illness.
And a big part of me can see who she is slipping away, lack of understanding of the children's ages, and what is going on have increased markedly in the last few months, so if she isn't eating, does it matter, as I don't like seeing her disappear.
Had phonecall with my brother's ex partner this week, was fairly amicable, OH spoke to her first, seemed ok when he chatted with her, but said afterwards he couldn't be bothered with her, she had only been miserable for the last 15 years when we had seen her and has no desire to meet with her. He is right, and I am not sure I want to put myself out to meet up if it is going to be a bit stilted and prickly, not sure the kids want to see their cousins, which I am very upset about, but it isn't of my making.
She said brother did bring both the boys to see my mum at Christmas which I am glad of, suspect they won't have enjoyed it much, my kids accept my mum's odd ways as they know her from before the illness, his kids won't, partly as they never saw her as brother never made the effort and partly they are younger than mine. His elder son doesn't really like being just with dad, and only went to keep younger son company (the boys are 11 and 9). All a big mess of my brother's making.
Off out on bike now and fundraising bbq at enighbour's this afternoon - lent them our gazebo as forecast not great.
https://www.bbc.co.uk/news/uk-wales-politics-42905335
Hope you're not too exhausted from your work trip and can relax this weekend. Thunderstorms forecast for this afternoon. Was quite overcast and cool when we were at Alyn waters yesterday, and much warmer here.
Popped round to take mum's food to her, and as it often the case now she was tucked up in bed asleep, I feel guilty for not waking her up, but hate to disturb her so just leave her asleep. If I do wake her she is so deaf, any conversation it hard, so never sure if it is deafness or lack of comprehension, think it used to be more of the former and now more the latter.
I read her care plan, and she is often refusing to have a meal heated up in the evening, I have spoken to the care team about this, and they don't seem to see a problem and tell me she is eating well. I have worked out for a while she is eating less than one ready meal every 2 days, as I know how many I buy. Unusually this time, she had pots of creme caramel still in fridge, either I bought more than ususal or she is eating a lot less - I know she normally eats these first, as she likes them so much. Not sure what to do, the care team really like her, including her designated senior, have been there since she moved in over 4 years ago, so they do know her well, so guess it is a natural progression of the illness.
And a big part of me can see who she is slipping away, lack of understanding of the children's ages, and what is going on have increased markedly in the last few months, so if she isn't eating, does it matter, as I don't like seeing her disappear.
Had phonecall with my brother's ex partner this week, was fairly amicable, OH spoke to her first, seemed ok when he chatted with her, but said afterwards he couldn't be bothered with her, she had only been miserable for the last 15 years when we had seen her and has no desire to meet with her. He is right, and I am not sure I want to put myself out to meet up if it is going to be a bit stilted and prickly, not sure the kids want to see their cousins, which I am very upset about, but it isn't of my making.
She said brother did bring both the boys to see my mum at Christmas which I am glad of, suspect they won't have enjoyed it much, my kids accept my mum's odd ways as they know her from before the illness, his kids won't, partly as they never saw her as brother never made the effort and partly they are younger than mine. His elder son doesn't really like being just with dad, and only went to keep younger son company (the boys are 11 and 9). All a big mess of my brother's making.
Off out on bike now and fundraising bbq at enighbour's this afternoon - lent them our gazebo as forecast not great.
Ann - I do hope your MIL gets the help you need. Im trying to be positive and not cynical
Would it work if she had her main meal mid-day? I know mum used to eat better at mid-day than in the evening.
@jugglingmum as canary says, might a midday meal be better? That said, I know when my mum was in sheltered housing, her appetite diminished rapidly, until as you say, she wasn't even eating her favourites - in her case, rice pudding, fruit pots and prawn sandwiches! I used to count it a victory to get her to eat a few crisps, a biscuit or a few pieces of pineapple....
It's great that the carers know your mum so well, hope they can tempt her to eat (and especially drink) sufficiently well.
Lindy x
It's great that the carers know your mum so well, hope they can tempt her to eat (and especially drink) sufficiently well.
Lindy x
Jm, I am so glad that until now, we have been spared the distress of seeing Mil refuse food. Sending you lots of {{{{hugs}}}}}} and hoping that trying her main meal at lunch time will help.
I've spent all day at the CH with Mil. Got there this morning, and she was - well, I honestly don't know how to describe it. Writhing, jerking, spasms every few minutes, pushing herself off the chair in the lounge, so they had tried the one in her room to see if she would settle where it was quieter - but each time they got her on the chair, she was off it before they got to the door. When I arrived, they had tried using the v shaped cushion to 'wedge' her safely on the bed - but she was hanging off the bed as I walked into the room. I tried to re-position her myself, but had to call for help when she started punching out at me. We - staff and I - decided to try her on a mattress on the floor, with crash pads either side. She was then lifting her legs off the mattress and throwing them sideways, so we padded up the bed base - to try and stop her hitting her legs on the metal frame - but she pulled the padding off. When she didn't do that, she was moving down the bed and rolling onto the floor. No sooner had the staff moved her to a safe position, than she was off the mattress again, thrashing her legs around, jerking, arching her back, shouting. In the end, I decided to nip out to get ice pops (she wouldn't stay sat up to drink, though she was desperately thirsty, and the risk of her choking was too great, so they were desperately needed) , shoved a handful of snacks and some cans of pop in my bag, and went straight back. There just wern't enough staff to give her 1-1, though God knows, they couldn't have tried any harder.
She has been like this since yesterday morning, apparently, hasn't slept for more than the odd hour and you can see how exhausted she is. Her lower arms and legs are so bruised that they look black, you can't put a finger between the marks. She was calling out, almost screams at times, going rigid and hitting out one minute, crying and with arms outstretched, wanting cuddles the next. And the whole time, it almost like she was having constant cramp all over her body, she couldn't keep still. Off the matress and onto the crash mats every few minutes, then onto the floor. One of the activity staff brought her paperwork in with her, and sat with me and Mil for a few hours, but even then, we had to call for help to get her off the floor countless times, because she was so resistant to help or anyone touching her to get her back onto a comfy surface, at least. She has gouged my right arm in several places, the back of my kneck, twisted both my wrists and crushed my fingers on numerous occasions, and - as both myself and staff tried lying on the mattress with her, to stop her rolling off, she also managed to kick me in the back of the head and in the face, knocking my specs clean across the room. And I got off lightly compared to the staff who were in and out trying to help.
About 4pm, one of the nurses had the bright idea of trying Mil on one of the huge bean bag beds from the sensory room. Initially, this seemed to stop her pushing herself down and onto the floor, but then she started rolling to the side and kicking at the metal bed frame or her chest of drawers. In the end, her bed was moved and the floor of her room filled with bean bag beds and crash mats - it was like a padded cell, but by using bags wedged against the walls, it stopped her rolling or writhing down the room and towards the door. About half an hour later, she finally fell asleep, and as supper was over, and the staff had run round like loons to get all the residents washed and changed for bed, so could now spare someone to sit with Mil, I was able to leave around 6pm. I am sore, stiff, exhausted and just heartsick at what I saw today. But they couldn't have kept her safe without me being there, so I will be back first thing tomorrow, and if its the same situation, I will stay for the day again. I don't know what else I can do. And I don't know what will happen on Monday, when I have to work.
And - I filmed Mil, writhing and rolling and jerking and crying. And if the *(&^%&* manager still says no and wants more 'evidence, I'll make damn sure that she see's it - and so will every damn press outlet that I can think to send the footage too. After seeing her like that today, I have just had enough.
Love to all xxxx
I've spent all day at the CH with Mil. Got there this morning, and she was - well, I honestly don't know how to describe it. Writhing, jerking, spasms every few minutes, pushing herself off the chair in the lounge, so they had tried the one in her room to see if she would settle where it was quieter - but each time they got her on the chair, she was off it before they got to the door. When I arrived, they had tried using the v shaped cushion to 'wedge' her safely on the bed - but she was hanging off the bed as I walked into the room. I tried to re-position her myself, but had to call for help when she started punching out at me. We - staff and I - decided to try her on a mattress on the floor, with crash pads either side. She was then lifting her legs off the mattress and throwing them sideways, so we padded up the bed base - to try and stop her hitting her legs on the metal frame - but she pulled the padding off. When she didn't do that, she was moving down the bed and rolling onto the floor. No sooner had the staff moved her to a safe position, than she was off the mattress again, thrashing her legs around, jerking, arching her back, shouting. In the end, I decided to nip out to get ice pops (she wouldn't stay sat up to drink, though she was desperately thirsty, and the risk of her choking was too great, so they were desperately needed) , shoved a handful of snacks and some cans of pop in my bag, and went straight back. There just wern't enough staff to give her 1-1, though God knows, they couldn't have tried any harder.
She has been like this since yesterday morning, apparently, hasn't slept for more than the odd hour and you can see how exhausted she is. Her lower arms and legs are so bruised that they look black, you can't put a finger between the marks. She was calling out, almost screams at times, going rigid and hitting out one minute, crying and with arms outstretched, wanting cuddles the next. And the whole time, it almost like she was having constant cramp all over her body, she couldn't keep still. Off the matress and onto the crash mats every few minutes, then onto the floor. One of the activity staff brought her paperwork in with her, and sat with me and Mil for a few hours, but even then, we had to call for help to get her off the floor countless times, because she was so resistant to help or anyone touching her to get her back onto a comfy surface, at least. She has gouged my right arm in several places, the back of my kneck, twisted both my wrists and crushed my fingers on numerous occasions, and - as both myself and staff tried lying on the mattress with her, to stop her rolling off, she also managed to kick me in the back of the head and in the face, knocking my specs clean across the room. And I got off lightly compared to the staff who were in and out trying to help.
About 4pm, one of the nurses had the bright idea of trying Mil on one of the huge bean bag beds from the sensory room. Initially, this seemed to stop her pushing herself down and onto the floor, but then she started rolling to the side and kicking at the metal bed frame or her chest of drawers. In the end, her bed was moved and the floor of her room filled with bean bag beds and crash mats - it was like a padded cell, but by using bags wedged against the walls, it stopped her rolling or writhing down the room and towards the door. About half an hour later, she finally fell asleep, and as supper was over, and the staff had run round like loons to get all the residents washed and changed for bed, so could now spare someone to sit with Mil, I was able to leave around 6pm. I am sore, stiff, exhausted and just heartsick at what I saw today. But they couldn't have kept her safe without me being there, so I will be back first thing tomorrow, and if its the same situation, I will stay for the day again. I don't know what else I can do. And I don't know what will happen on Monday, when I have to work.
And - I filmed Mil, writhing and rolling and jerking and crying. And if the *(&^%&* manager still says no and wants more 'evidence, I'll make damn sure that she see's it - and so will every damn press outlet that I can think to send the footage too. After seeing her like that today, I have just had enough.
Love to all xxxx
Horrific for you and mil
You have evidence in that film. I do hope you do not need to show the world what is happening to mil, and that you get the sorely needed extra support she needs very soon
You have evidence in that film. I do hope you do not need to show the world what is happening to mil, and that you get the sorely needed extra support she needs very soon
Dear Ann, I am another regular lurker and very unfrequent poster on this forum but I would like you to know that I think that you are a hero! I really, really hope that the 1-1 is agreed on Monday and, of course, that your Mil finds peace soon. Her condition sounds horrendous. I am so sorry. xxx
Ann, that made me cry - for MiL and you (and for the staff)
You must feel so dreadful, heaven knows you have fought her corner for so long. The disease and that b***dy manager are equally evil.
I hope you can all (bar the manager) find peace soon.
As others have said, take care of yourself as you are important too and, as you have shown time and time again, a very special, caring lady. Your MiL couldn't ask for anyone better to fight her cause - such an appalling shame that you have to.
Hugs xx
You must feel so dreadful, heaven knows you have fought her corner for so long. The disease and that b***dy manager are equally evil.
I hope you can all (bar the manager) find peace soon.
As others have said, take care of yourself as you are important too and, as you have shown time and time again, a very special, caring lady. Your MiL couldn't ask for anyone better to fight her cause - such an appalling shame that you have to.
Hugs xx
I am appalled!
Pity you aren’t free Monday morning to take that clip to that stupid manager! If he refuses after that, yes, it should be leading the news programmes that evening, with the headline, this behaviour isn’t bad enough for 1:1! This is what late stage dementia is about. Live well with dementia? Bah!
How about a list of all injuries mil inflicted on others in one day for the manager, plus the clip, email him tomorrow so he gets it Monday morning, as you’re working.
Pity you aren’t free Monday morning to take that clip to that stupid manager! If he refuses after that, yes, it should be leading the news programmes that evening, with the headline, this behaviour isn’t bad enough for 1:1! This is what late stage dementia is about. Live well with dementia? Bah!
How about a list of all injuries mil inflicted on others in one day for the manager, plus the clip, email him tomorrow so he gets it Monday morning, as you’re working.
Oh, Ann, that's simply heartbreaking! I don't know what to say, other than you are amazing, I'm glad you took the video, and if MIL doesn't get 1:1 funding in her situation, it's a disgrace.
Wishing you continued strength (and some peace and comfort soon).
Love, Lindy xx
Wishing you continued strength (and some peace and comfort soon).
Love, Lindy xx
I keep saying 'Thank you', don't I, and it never feels like quite enough. I came in last night, extremely emotional, to find OH surrounded by tissues and looking like death warmed up and clearly feeling absolutely awful that he couldn't be with his Mum too, so I just couldn't vent at him, poor begger. I dumped it all on you guys (again!), and as ever, you are all there. I think I would crack up without you all, and your support xxxx
I am a lot less fraught this morning (you'll be glad to hear!). The big positive to yesterday is that by spending the whole day there, I saw first hand what is needed and how impossible this situation is for the staff. Whenever they could, they left themselves one short in the lounge to have someone sit with Mil, to help me when intervention was needed to stop her ending up on the floor, or banging her legs and arms (even her head on occasion) against surfaces and objects that could have injured her. When there were periods of time that they simply couldn't spare someone else to be in there, they came running when I called for them, or hit the bell for help. They also came running on many occasions when even with a second person in the room, Mil was so resistant to being moved to a safe postition that more staff were needed to do the task without injury to her - or to myself and the other staff with me. There were at least 5 occasions when it took 4 of us to handle her safely. The key to keeping her safe is definitely having one person there, all the time, to summon the help when it's needed. Its also clear that an alternative is needed to pushing the bell button, because there were 2 occasions when the speed at which Mil moved left me quite literally stuck holding onto her, to prevent a fall or her determindly kicking out in a way that would have led to her injuring her legs/feet, and I couldn't reach the bell. I had to yell out for help, and thankfully, each time there was someone within earshot. You can get a plug in cable, with a call button on the end, but cables are easily tangled and would actually get in the way when you have your hands full with Mil writhing and screaming and fighting against you. Some sort of 'wireless' hand held alarm is needed - so now I know that, I can look for such a device and provide it asap. In addition to her becoming physically aggressive at all interventions, I also saw her go from the writhing and jerking to sudden violence, literally in the blink of an eye, with no provacation or predictability. In all instances, the aggression was accompanied by an almost unbelievable surge of physical strength and speed from Mil that quite literally took my breath away. She can punch and kick like a mule, she is so quick to grab and gouge or twist wrists and fingers and it takes two people at least to get her to ease her grip. I also saw her trying to bite - not an issue in itself as she has no teeth, but often the lunge at staff to try and bite was swiftly followed by an attempt to head butt. The 'writhing' and jerking also leads to what seem to be her involuntarily lashing or kicking out, again, without warning. I saw, over and over again, how she was so tired and tried to sleep and how each time, the spasms and jerks kicked in and woke her up, preventing her from resting. I counted 4 separate instances of her gouging at herself, or pulling her own hair out. I saw so many indications that she is hallucinating - she gestures, points , even holds her hands out to an area where no one is, and then has an unintelligible, one sided conversation - which can quickly descend into either tears or anger, the latter leading to her lashing out or screaming in fury. It took at least two staff to get food and liquids into her - one to give her the food or drink, one be ready to hold her so she couldn't writhe into a prone position, or to try and stop her hitting at the staff trying to give her food or drink. In addition, there were numerous occasions when she pulled at her clothes, lifting her top up and exposing herself - the door to her room has to be open for safety, without someone there to repeatedly 'cover her up', anyone passing would get an eyeful, which is an obvious compromise to her dignity. The last point may seem almost trivial in the light of all the other issues - but its all evidence and its still a valid reason we can use to pressure for the support.
With the experience yesterday (and possibly today too!) I can argue with absolute authority now about the need for 1-1. I saw first hand how dangerous it would be to leave her unattended. I saw the unpredictability of, the potential for and the actual occurances of injuries to staff and to Mil herself. I saw first hand all the different stratagies the staff tried - they were just desperate to keep her safe, it was a case of 110% effort in terms of ingenuity and persistence to try and protect her. I also saw how Mil repeatedly thwarted all those attempts. I have wracked my brain, thinking of aids or ways or means to deal with every issue I saw. I absolutely know that 1-1 is the only option. This 'manager' said to me on the phone that 'for example' it may be that she needs to organise an OT to come in and 'assess' Mil to see if there is some sort of chair/seat that will stop the falls risk, or if bed rails will help. Seeing Mil's agility and determination yesterday, I can see that bed rails would just be an obsticle that she will try to climb, and would increase the risk of injury. And that no matter what the shape or design of a chair, without restraint, she will get out of it - and that restraint will increase her agitation and distress. I suspect that the manager will try and insist on these steps, mainly to delay providing 1-1, but I saw enough to shoot those ideas down.
The bean bags seemed to considerably lessen the risk of her being able to kick or lash out at objects and cause herself injury, and also made it difficult for her to roll onto the floor. However, trying to get to her to give drinks, food or personal care is bl**dy impossible with the floor covered in them. I also am worried about choking risks whilst hse is in that situation. I think everyone who entered the room ended up tripping or nearly tripping, and at one point, I damn near fell on top of her. The bean bags remove some risks - but add others. Although keeping her free from injury is a priority, I don't think that having a 77 year old, terminally ill lady lying on bean bags on the floor is what anyone could call an appropriate situation.
It may be (please God) that I get there today, and the agitation and writhing of yesterday isn't present. She may be so exhausted after what added up to nearly 40 hours of her being in the state that she was in yesterday, by the time I left at 6, that she is just sleeping, exhaustion having finally won over even the TD symptoms that were stopping her sleeping for so long. She may be sat in a chair and we may even get smiles and hugs and some comprehensible speech. Any of those scenario's may last all day - or may change from one to another, without warning. There is just no way to call it at the moment - and I find this unpredictability pretty much the hardest thing to get your head round. There have been occasions over the last 2/3 weeks when if she was observed by someone not in the know, that they wouldn't understand why 1-1 is appropriate. There are a couple of occasions where I have even questioned the need, simply because she seemed so unresponsive and ill, that I honestly thought it would just be hours before she passed away. But then the next time you see her, all hell has broken loose, and you even end up wondering if 1-1 is going to be enough!
Today, I am going armed with notepad and pen, and, if its the same as yesterday, will note for myself every single incident and the times. This manager should get back to Mr Gethings office by tomorrow (I hope). I suspect she will stick to the not enough evidence stance. Mr Gething's office will get my notes, the photographs and the video by way of a response if that happens. I really, really do not want the video out there for public consumption, not at this time, if I can avoid it. But if needs must, no matter how bad it will make me feel, I will use it to get Mil the care she needs, if I have to. The meeting with the consultant, social worker and everyone else is scheduled for 27th of this month, 10 days from now. After yesterday and what I saw, that's too long as far as I am concerned, so I will be pusing for the support to be there sooner, by whatever means.
Thank you, so much, again, everyone - love to you all xxxxx
I am a lot less fraught this morning (you'll be glad to hear!). The big positive to yesterday is that by spending the whole day there, I saw first hand what is needed and how impossible this situation is for the staff. Whenever they could, they left themselves one short in the lounge to have someone sit with Mil, to help me when intervention was needed to stop her ending up on the floor, or banging her legs and arms (even her head on occasion) against surfaces and objects that could have injured her. When there were periods of time that they simply couldn't spare someone else to be in there, they came running when I called for them, or hit the bell for help. They also came running on many occasions when even with a second person in the room, Mil was so resistant to being moved to a safe postition that more staff were needed to do the task without injury to her - or to myself and the other staff with me. There were at least 5 occasions when it took 4 of us to handle her safely. The key to keeping her safe is definitely having one person there, all the time, to summon the help when it's needed. Its also clear that an alternative is needed to pushing the bell button, because there were 2 occasions when the speed at which Mil moved left me quite literally stuck holding onto her, to prevent a fall or her determindly kicking out in a way that would have led to her injuring her legs/feet, and I couldn't reach the bell. I had to yell out for help, and thankfully, each time there was someone within earshot. You can get a plug in cable, with a call button on the end, but cables are easily tangled and would actually get in the way when you have your hands full with Mil writhing and screaming and fighting against you. Some sort of 'wireless' hand held alarm is needed - so now I know that, I can look for such a device and provide it asap. In addition to her becoming physically aggressive at all interventions, I also saw her go from the writhing and jerking to sudden violence, literally in the blink of an eye, with no provacation or predictability. In all instances, the aggression was accompanied by an almost unbelievable surge of physical strength and speed from Mil that quite literally took my breath away. She can punch and kick like a mule, she is so quick to grab and gouge or twist wrists and fingers and it takes two people at least to get her to ease her grip. I also saw her trying to bite - not an issue in itself as she has no teeth, but often the lunge at staff to try and bite was swiftly followed by an attempt to head butt. The 'writhing' and jerking also leads to what seem to be her involuntarily lashing or kicking out, again, without warning. I saw, over and over again, how she was so tired and tried to sleep and how each time, the spasms and jerks kicked in and woke her up, preventing her from resting. I counted 4 separate instances of her gouging at herself, or pulling her own hair out. I saw so many indications that she is hallucinating - she gestures, points , even holds her hands out to an area where no one is, and then has an unintelligible, one sided conversation - which can quickly descend into either tears or anger, the latter leading to her lashing out or screaming in fury. It took at least two staff to get food and liquids into her - one to give her the food or drink, one be ready to hold her so she couldn't writhe into a prone position, or to try and stop her hitting at the staff trying to give her food or drink. In addition, there were numerous occasions when she pulled at her clothes, lifting her top up and exposing herself - the door to her room has to be open for safety, without someone there to repeatedly 'cover her up', anyone passing would get an eyeful, which is an obvious compromise to her dignity. The last point may seem almost trivial in the light of all the other issues - but its all evidence and its still a valid reason we can use to pressure for the support.
With the experience yesterday (and possibly today too!) I can argue with absolute authority now about the need for 1-1. I saw first hand how dangerous it would be to leave her unattended. I saw the unpredictability of, the potential for and the actual occurances of injuries to staff and to Mil herself. I saw first hand all the different stratagies the staff tried - they were just desperate to keep her safe, it was a case of 110% effort in terms of ingenuity and persistence to try and protect her. I also saw how Mil repeatedly thwarted all those attempts. I have wracked my brain, thinking of aids or ways or means to deal with every issue I saw. I absolutely know that 1-1 is the only option. This 'manager' said to me on the phone that 'for example' it may be that she needs to organise an OT to come in and 'assess' Mil to see if there is some sort of chair/seat that will stop the falls risk, or if bed rails will help. Seeing Mil's agility and determination yesterday, I can see that bed rails would just be an obsticle that she will try to climb, and would increase the risk of injury. And that no matter what the shape or design of a chair, without restraint, she will get out of it - and that restraint will increase her agitation and distress. I suspect that the manager will try and insist on these steps, mainly to delay providing 1-1, but I saw enough to shoot those ideas down.
The bean bags seemed to considerably lessen the risk of her being able to kick or lash out at objects and cause herself injury, and also made it difficult for her to roll onto the floor. However, trying to get to her to give drinks, food or personal care is bl**dy impossible with the floor covered in them. I also am worried about choking risks whilst hse is in that situation. I think everyone who entered the room ended up tripping or nearly tripping, and at one point, I damn near fell on top of her. The bean bags remove some risks - but add others. Although keeping her free from injury is a priority, I don't think that having a 77 year old, terminally ill lady lying on bean bags on the floor is what anyone could call an appropriate situation.
It may be (please God) that I get there today, and the agitation and writhing of yesterday isn't present. She may be so exhausted after what added up to nearly 40 hours of her being in the state that she was in yesterday, by the time I left at 6, that she is just sleeping, exhaustion having finally won over even the TD symptoms that were stopping her sleeping for so long. She may be sat in a chair and we may even get smiles and hugs and some comprehensible speech. Any of those scenario's may last all day - or may change from one to another, without warning. There is just no way to call it at the moment - and I find this unpredictability pretty much the hardest thing to get your head round. There have been occasions over the last 2/3 weeks when if she was observed by someone not in the know, that they wouldn't understand why 1-1 is appropriate. There are a couple of occasions where I have even questioned the need, simply because she seemed so unresponsive and ill, that I honestly thought it would just be hours before she passed away. But then the next time you see her, all hell has broken loose, and you even end up wondering if 1-1 is going to be enough!
Today, I am going armed with notepad and pen, and, if its the same as yesterday, will note for myself every single incident and the times. This manager should get back to Mr Gethings office by tomorrow (I hope). I suspect she will stick to the not enough evidence stance. Mr Gething's office will get my notes, the photographs and the video by way of a response if that happens. I really, really do not want the video out there for public consumption, not at this time, if I can avoid it. But if needs must, no matter how bad it will make me feel, I will use it to get Mil the care she needs, if I have to. The meeting with the consultant, social worker and everyone else is scheduled for 27th of this month, 10 days from now. After yesterday and what I saw, that's too long as far as I am concerned, so I will be pusing for the support to be there sooner, by whatever means.
Thank you, so much, again, everyone - love to you all xxxxx
I know you don’t want the video “out there” I wouldn’t want to do that either, but if it’s the only way, needs must I guess
My thoughts are to send the video to the HB person today so they see it Monday. If that doesn’t fulfil the more proof request, then I don’t know what will, but it may. By sending it, You may get the wheels unstuck and provision a bit quicker
My thoughts are to send the video to the HB person today so they see it Monday. If that doesn’t fulfil the more proof request, then I don’t know what will, but it may. By sending it, You may get the wheels unstuck and provision a bit quicker
I'm with 2jays. Hopefully the video to the manager may preempt the need for it to be disseminated wider. Sending you more hugs -- this disease is appalling and brutal. What MiL is going through defies empathy, even: I don't want to put myself in her shoes imaginatively because I don't want to contemplate what it must be like for her, if that makes sense. I'm so so sad for you all. May she find peace soon. xxxxx
Echoing Red once again. This cant be a happy time for mil, I wonder how much, if at all, she is aware of what’s going on. She obviously can’t do anything about it. What I mean, it’s dementia, noe a conscious decision on here part!
Poor mil! What a change from her former ways! And they have the authorities have the gall to say dementia is not an illness. If it were a dog or cat behaving in that way, they would be painlessly out to sleep. I know you can’t do that, but really!
((((((Hugs))))))
My plans today are to go into town to stock up - petrol and cash, then go down to the nearest large T’s and get phones. My mobile seems to have given up, and the house phone had not been working properly for years. One handset has given up, the other loses battery after 45 mins - that has stopped the + 1 hr phone calls to my cousin!
Think she’s under is nearly better, just an ache yesterday after I picked up a plate and bowl on that side. The nuisance is, I use my stick in the other hand ( when I’m only using one stick rather than two). If I didn’t have to eat......but I did lose a kg this week
Poor mil! What a change from her former ways! And they have the authorities have the gall to say dementia is not an illness. If it were a dog or cat behaving in that way, they would be painlessly out to sleep. I know you can’t do that, but really!
((((((Hugs))))))
My plans today are to go into town to stock up - petrol and cash, then go down to the nearest large T’s and get phones. My mobile seems to have given up, and the house phone had not been working properly for years. One handset has given up, the other loses battery after 45 mins - that has stopped the + 1 hr phone calls to my cousin!
Think she’s under is nearly better, just an ache yesterday after I picked up a plate and bowl on that side. The nuisance is, I use my stick in the other hand ( when I’m only using one stick rather than two). If I didn’t have to eat......but I did lose a kg this week
Im another oner who would suggest that the video is sent today so that it is seen tomorrow.
You might also wish to add that the only reason that your MIL was kept from injury was because you were there, but you will be at work tomorrow and are unavailable, so if your MIL is injured because she is left unattended, you will hold her personally responsible.
You might also wish to add that the only reason that your MIL was kept from injury was because you were there, but you will be at work tomorrow and are unavailable, so if your MIL is injured because she is left unattended, you will hold her personally responsible.
Morning all,
Ann, I hope - for everyone's sake - that MIl is quiet and calm today. Yesterday must have been hellish
It is utterly disgusting that anyone should have to suffer in the way that MIL is, even worse that the authorities that are supposed to help are simply not.
I cannot add anything to the suggestions and help that have already been given but I would agree that sending the video today might help get things moving a little sooner.
2Js, I hope that offering your mum her meal at lunchtimes proves helpful. Have the staff tried simply heating up something and presenting her with it? I know it does away with choice but it did help with mum.
Sending (((hugs))) to all.
Ann, I hope - for everyone's sake - that MIl is quiet and calm today. Yesterday must have been hellish
It is utterly disgusting that anyone should have to suffer in the way that MIL is, even worse that the authorities that are supposed to help are simply not.
I cannot add anything to the suggestions and help that have already been given but I would agree that sending the video today might help get things moving a little sooner.
2Js, I hope that offering your mum her meal at lunchtimes proves helpful. Have the staff tried simply heating up something and presenting her with it? I know it does away with choice but it did help with mum.
Sending (((hugs))) to all.
