1. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,951
    Suffolk
    Is it because the HB are closer to the money, and know there isn’t any, or even being pressurised from above?
    Whatever, it’s nonsense to say they need more proof. I bet they haven’t read through the 100+ pages that the home photocopied!
    I’m so sorry, and annoyed, it’s come to this.

    ((((((((Hugs)))))))
     
  2. 2jays

    2jays Registered User

    Jun 4, 2010
    11,597
    West Midlands
  3. Harlech

    Harlech Registered User

    May 15, 2017
    34
    @Ann Mac - appalled by your issues. Yesterday I attended a speaker at a dementia cafe at our local hospice who is supporting dementia patients and carers. She was from the Older Peoples commissioner for wales office. They can intervene if having issues with local bodies etc. It might be worth contacting them to see if they can offer any help. They have a case team apparently. Google older people’s commissioner for wales and you should get the link to their website. Hope it is of some help.
     
  4. canary

    canary Registered User

    Feb 25, 2014
    10,240
    Female
    South coast
    No advice - just appalled
    (((((((hugs)))))))
     
  5. 2jays

    2jays Registered User

    Jun 4, 2010
    11,597
    West Midlands

    http://www.olderpeoplewales.com/en/Home.aspx
     
  6. dora

    dora Registered User

    Aug 1, 2007
    145
    England
    If this woman doesn't understand hundreds of pages of evidence, how about a video of MIL?

    Sending you strength and hugs to get through this incredible battle.
     
  7. Slugsta

    Slugsta Registered User

    Thanks for the update Ann. Like you, I am furious that MIL's needs are being ignored, despite overwhelming evidence and share your frustration that there appears to be nothing else you can do about it :mad:

    (((hugs))) all round.
     
  8. Hair Twiddler

    Hair Twiddler Registered User

    Aug 14, 2012
    881
    Middle England
    Truly awful what your poor MIL is having to endure without the support of our "public guardians". You are magnificent - keep strong.
    Your hubby and children are made of strong stuff too. (your youngest daughter is of a similar age to mine...so many similarities)
    Sending you invisible everything i can.
     
  9. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    3,701
    Hi everyone x

    2jays, thank you so much. When I asked who I could go to for support, I was told only that I could contact our local health board if I wasn't happy with the CHC decision/actions. Complain to the health board about the actions of the health board, in other words, and expect them to deal with it fairly. It's not going to happen, is it? The info you have found for me, bless you, along with the suggestion from Harlech, gives me a lot more options - I really, really appreciate it xxx

    Another glimmer of light - Vaughan Gethings' Office have actually replied! Or at least, a person from a Government Health and Social Services group, which is called 'Complex and Unscheduled Care' , which I have never heard of before - didn't know it existed.

    "I am writing to acknowledge your email to the Cabinet Secretary for Health and Social Services, Vaughan Gething and to let you know that I have been in touch with relevant officials at the Health Board about the decision that was reached following your Mother in Law’s CHC assessment. We expect to have the health board’s response early next week and if there is anything we need to clarify with you, I hope you will not mind if I contact you directly before we submit our findings to the Cabinet Secretary. "

    That was quick - and totally unexpected after the auto response I originally received. It's a case now of waiting to see if they just accept the 'we need more evidence' from the manager at face value, or whether they actually question that in the light of so many others - the care home staff, manager and nurses, the social worker, the consultant, ourselves and even the CHC assessor - arguing that there is already plenty of 'evidence', and the 1-1 needs to be in place urgently. Half my brain is saying 'No way can they ignore so many other professionals and her family' - the other half is saying 'You think? Just watch them!'.

    Youngest has a rehearsal for her theatre groups latest show in Chester this morning, and I'll go straight from dropping her off to see Mil. OH is full of a cold, so though its his weekend off, it's best if he stays away from Mil at the moment. The oldest two are not down this weekend, though oldest dau is planning on coming down next weekend if she can. No idea if I will get to the CH this morning to find Mil in bed, sleepy and unresponsive, or up and causing chaos - her condition is swinging from one to the other by the hour, let alone by the day. My biggest worry at the moment is a return of the vomiting, which seems to come and go for her, as she is unable to sit herself forward, or call for help once it starts. The risk of her choking, of aspiration, is so high, the thought of that is horrific, and is really playing on my mind and also on OH's mind a lot.

    A million thank you's to all of you, yet again, for all the hugs and good wishes and support xxxxxxx Love to you all xxxx
     
  10. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    10,167
    Merseyside
    I’m so glad you got a quick response Ann. I wish you strength to keep going.
     
  11. RedLou

    RedLou Registered User

    Jul 30, 2014
    1,162
    & in all of this, remember that you matter and fish and chips for supper or an unvacuumed floor ain't gonna hurt no one. Take care, lovely Ann.
     
  12. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,951
    Suffolk
    Wise words from Red, as usual. Take heed, Ann!
    Really pleased you got a reply, fairly prompt as well.

    Your poor OH, with a cold just at an inconvenient time!
    More (((((Hugs))))
     
  13. CeliaW

    CeliaW Registered User

    Jan 29, 2009
    5,655
    Hampshire
    Hoping that response culminates in positive action.

    Supportive hugs for you all xx
     
  14. 2jays

    2jays Registered User

    Jun 4, 2010
    11,597
    West Midlands

    Instant, as instant as it can be

    Squishy hugs xxx
     
  15. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,302
    Cotswolds
    Wow!! That reply sounds hopeful. It pays to go to the top !!
    Well done Ann and very best wishes.
    Lindy xx
     
  16. jugglingmum

    jugglingmum Registered User

    Jan 5, 2014
    5,066
    Female
    Chester
    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.
     
  17. canary

    canary Registered User

    Feb 25, 2014
    10,240
    Female
    South coast
    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.
     
  18. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,302
    Cotswolds
    @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
     
  19. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    3,701
    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
     
  20. RedLou

    RedLou Registered User

    Jul 30, 2014
    1,162
    Oh Ann. How heart-breaking to see. But I'm glad you filmed it. That's the evidence.
    Sending masses of hugs.
    JM - also hugs to you. I hope the suggestions help re: eating.
     

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