1. MrsTerryN

    MrsTerryN Registered User

    Dec 17, 2012
    Oh Ann I hope it doesn't jeopardise her bed placement .
    Do hope someone got back to you about the meetings and the bed
    This caring is so difficult
  2. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    Thanks everyone,

    I do know that you are all right, that its better that she stays at the hospital whilst they try and stabilise her behaviour rather than risk a failed discharge and the possibility (probability?) that the home won't have her back if that happens. But I was just so sick of having things going wrong at the last minute, yet again, that I'm afraid I was throwing a bit of a hissy fit myself yesterday - sorry :eek: And if I'm honest, although a lot of my fed-up-ness is down to concern about Mil, some of it is also down to me really wanting everything settled - or at least more settled - so that I have the time to focus on other things that are going on, that are currently being very neglected due to everything revolving around 'Getting Mil sorted'. And that in part, the attitude of the 'professionals' is something that I am currently feling especially furious about - there is just no consideration or acknowledgement that we (I) might have other committments, just an expectation that we should be able to chop and change even our working hours at a moments notice, if THEY think its necessary and an attitude that we are being difficult or obstructive if we try to explain that sorry, we can't always do that.

    Its all a bit me-me-me and feeling sorry for myself, I'm afraid :(

    The SW did phone me back fairly promptly, to be fair. And once again, the ward hadn't contacted her - she not only knew nothing about Mil's move being cancelled - she didn't even know that the move had been sceduled for today in the first place :rolleyes: And she wasn't happy - but she can sort that one out with the ward, definitely not down to me to make sure she is kept informed. Concerns about Mil losing her place at the home were pretty much dismissed and there appeared to be no advice she could give. I suppose I was hoping for a little bit of reassurance, as well as advice - silly me, not a flipping chance!

    The home didn't phone back until after 4 o'clock. The hospital had actually phoned them (colour me amazed!) and the woman I spoke to said that the doctor had explained that Mil was 'unwell' and that an agreement had been reached that the move could be delayed till next week - thank God, they will hold the room. No idea if Mil will have to pay the fee's out of her own funds whilst its being held, but don't care - it gives us a breathing space. Concerned, however, that the home seem to think that Mil is physically ill (due to the chest infection), rather than the hospital having told them that this is all down to current aggressive/difficult behaviour - I'm not in favour of fudging and not being transparent. In my experience, that usually leads to more trouble, further down the line :(

    Once I had that call, I shot off to grab some much needed shopping, OH went and picked up son from the train station, then we went to visit Mil - amongst all the stress about the cancelled move, we were also obviously worried about how she was and needed to see her ourselves. The staff nurse let us in, and once again, the warning about her behaviour. Youngest didn't come, so we were able to stay on the main ward, although we did go into the dining area with Mil. When we first saw her, it was almost like a step back in time to some of the worst of what we dealt with when she lived here - remember that fixed, angry, mulish expression I used to talk about? I haven't seen that for a while now - but it was back in force last night. Her body was absolutely rigid as she sat, gripping her frame and everything about her radiated anger. But when we called her and she saw us, she more or less melted! Her face softened to a big smile, her body relaxed - and we actually had a really good 30-odd minute visit with her. Confabulations, of course, confusion of course - but absolutely no sign of any agitation.

    The staff nurse saw us out, and painted quite a different story - I like this particular staff nurse, I've found she tends to tell us it like it is, but does so with obvious compassion and sometimes humour. We said that we had been expecting the worst, but that Mil had been really chilled. She said she was glad to hear it, but that we had been lucky - that the ward had had to resort to 'time out' with Mil that day on a couple of occasions, because she was quite simply 'looking for a fight' and absolutely nothing was distracting her or calming her. So she had been escorted to her room, as a way of preventing her getting physical with the other patients. By the sound of it, she had been provocative, insulting and threatening, and the staff had had their hands full stopping her getting violent :( The staff nurse commented how Mil had had an answer for 'everything' - again, shades of bad days here, when every single thing said to try and calm her and reassure her was met with a rapid response and a twisted logic that justified her (in her her head) staying nasty and angry. The nurse described her as 'incredibly paranoid'. We were left with the impression that Mil's behaviour had been incredibly hard for them to manage and that they were slightly stunned by how impossible it is to distract or calm her. As OH commented - we definitely know how that feels :rolleyes: They are stopping the ab's, as from yesterday, and will review on Friday, then again on Monday - its now just a case of wait and see.

    The meeting is at 11.30 this morning - OH is working tonight, so I'm going solo. OH has offered to come, but his job is too damn responsible for him to risk not being properly rested when he goes on duty, so I've said I can cope. Not really sure what to expect - trying to be ready for just about anything, I guess :( If there are going to be any nasty bombshells about funding, todays the day I think that they are likely to be lobbed at me - we'll see.

    Amy, I am so glad that all went so well with your meeting - Nurse A sounds really good, knowledgible and sensible, which is great. I so understand the wobble over the finances and accounts - and the feeling that you just can't think about something any more, even if its only a short break. At times, aspects of this whole, horrible illness and the caring that goes with it are just so totally overwhelming and exhauting, that I think we have to shut down, at least in part, to even cope - sending {{{{{{{{hugs}}}}}} and hoping a good nights sleep helps xxxx

    Take care everyone and have a good day - will try and update later xxxxx
  3. CeliaW

    CeliaW Registered User

    Jan 29, 2009
    This must be so hard Ann, although I can understand their reluctance to make the transfer, it must be devastating to have it all fall apart at this late hour.

    You have put in so much time, care and energy into trying to get the best for MiL, it's perfectly understandable that you feel as you do. Surely by the law of averages you deserve some things to go right to allow you some me/family time and respite from all the stress.

    Will send lots of positive supportive vibes through the ether for the meeting today. Take care xx
  4. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    Ann, there is NO need to justify your feelings to us. Of course you are sick of this last-minute letdown happening and of course you need for things to get settled, for everyone's benefit. I don't think for a moment you are being selfish, but even if you were, don't worry about it. This limbo isn't good for MIL or you or your husband or jobs or kids or anyone.

    I am definitely struck by their description of MIL's behaviour as being exactly how you used to describe her behaviour at home. It really does sound identical, the threats, the answer for everything, the physical posture, the facial expression, even them sending her to her room for a time out!

    I still don't know how you coped at home for as long as you did, Ann. It reminded me of reading your posts and feeling so overwhelmed for you.

    However, I am heartened that she responded positively to you and your OH visiting. That is actually amazing, and not something you would necessarily have been able to experience at home. Even more reassuring is that she wasn't agitated during your visit (confusion and confabulation seem, sadly, to be expected). Again, not something you could have experienced previously. I know the whole situation is horrible, but it's great that you had an okay half hour with MIL.

    Right now it's almost 11:30 here in the States, so I know your meeting is over and done with and I can only hope it went as well as possible.

    Thanks for the hugs and kind wishes. It was probably good to do some hysterical sobbing and get things out of my system; I still don't even know what I was upset about, just that I've felt like this ever since the move, three weeks ago this week, so no doubt a lot of pent-up emotions that needed to go somewhere.

    Sending good wishes to everyone here today. We finally seem to have officially started autumn/fall in my neck of the woods; even last week we were having temperatures conducive to me wearing shorts and t-shirts. Not unknown at this time of the year but not usual, and certainly pleasant.

    And the care home have just called me and I need to sort out a problem with my mother's television/cable, so must run!
  5. Slugsta

    Slugsta Registered User

    Evening all,

    (((Ann))) you do not come across as selfish at all. Far from it! As Amy says, even if you were it would be completely understandable.

    Yes, the description of MIL does sound so much like the way she used to be when she was with you. That fixed expression and refusal/inability to accept any reassurance, reason or diversion :( It's lovely that she relaxed when she saw you - something that could only happen now that you are not delivering 24/7 care. I do hope that today's meeting went well.

    (((Amy))) one thing I have already learned is the toll, mental and physical, that this disease takes on the loved ones of the PWD. It must be incredibly hard to be reminded of how much your mother has lost :( Sorry that you had to rush off to sort out TV issues, I hope that doesn't happen often. I also hope that you are looking after yourself and getting lots of rest.


    I had a call from the care agency yesterday. They were concerned because Mum isn't eating much. We have agreed that the morning carer will make Mum a sandwich and leave it ready for lunch. The evening carer will heat a meal up and present it to her without asking if she wants one (except for Tues and Thurs, which are DC days, and Wednesdays when she goes out with me). Let's see how that goes!

    I am also awaiting a response form SS as I have asked for another assessment of Mum's needs. She certainly needs more input at weekends when the staff are not on duty.

    It's been very mild again today, temps back up into high teens. Many of the leaves are turning now, the garden centre we visited today had a few acers dotted around and they were stunning
  6. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    Hi everyone,

    Amy, we all read and know about how this illness causes deterioration, we know our loved ones are going to lose more and more abilities and probably become less and less like the person we love, we even know that the grieving process for someone with dementia starts even before we physically lose them - but, when there is a huge change that is brought about by this illness, no matter how much we think we are aware it will happen and are prepared for it, its still a massive, emotional sucker-punch. I think crying and sobbing (and punching wallls, swearing like a trooper, standing in the garden shed and screaming, etc, etc) are all more than understandable reactions. Sending you {{{{hugs}}}}} Hun xxxx

    I hope the new routine with food works with your Mum, Slugsta. And good luck with getting the extra support at weekends for your Mum too. Its a lot cooler round here now - the heating has finally gone back on, on timer, in the last week in this house! I am actually dying to get out to one of the local Nature reserves with the camera as well - because the colder weather has coincided with the trees putting on a very spectacular display of Autumn colour, and its absolutely beautiful!

    Thanks for all the good wishes re the meeting. It was a very, very long session! Myself, the assistant ward manager and the SW. A 'report' detailing Mil's presentation and needs, prepared by the nursing staff and a thickish booklet with a checklist against several criteria, going through it all page by page, and deciding on the level of Mils' needs, based on what was written on the report. Behaviour triggered a severe - no surprise there!. Cogniton, medication, mobility and psychological needs were rated as 'high', breathing 'moderate', continece as 'low' (I argued for that - the ward manager had Mil written up as being completely continent, with 'no needs' - she apparently doesn't work night and had no idea about the nightime incontinence!). There were 5 'no needs', including nutritin, skin and communication - I questioned the last one and was told that it was in respect of Mil actually being able to talk clearly, nothing to do with the content of what she says - so fair enough - because she is still mainly very fluent and clear.

    At the end of all that - nearly 3 hours - I was told that the 'outcome' meant that this would 'have to go to panal' as the results had triggered a 'dispute' - which basically meant that Mil's situation had raised questions about which pot the money to fund various components of her care should come from. I lost count of the number of times I asked what would happen if it was decided that Mils care (some or all of it) should be funded by CHC and then CHC was withdrawn at a later date?. I did feel as though I was being wilfully and delinerately misunderstood and getting a LOT of flannel in response . Eventually, the ward manager allowed that no matter what, her care costs should always be met under 117, even if CHC was ever withdrawn - the reluctance to give me that info makes me think that perhaps there is wriggle room there for them to avoid that, and that if she is awarded CHC and if it is then withdrawn at a later date, we will need to be on the ball to make sure we are given all the right info about what we need to do to ensure that 117 then kicks in. The SW did tell me that a 117 could be withdrawn - I replied that I knew that - but that as I understood it, it was only if Mil improved and got better? No clear response to that, it was a 'right - lets move on' type reply.

    That meeting was not about making sure that Mil recieves the most suitable care (which is how it was described to me) - it was basically just setting out the grounds for two departments to fight about who pays what - or at least, that's what I felt at the end of it.

    The SW then went to meet Mil to do this 'capacity test', and she has also demanded another best interests meeting (which she says I should be invited to attend, in accordence with 'correct procedure') - the last capacity test and 'best interest' meetings listed on the notes the ward manager brought in were dated at the time when Mil was put under the section 2. I very firmly pointed out that I knew that there was at least one more capacity test, when the section 3 was put in place, because the SW involved at that time phoned us to tell us about it. The SW present yesterday was polite, but made it clear she wasn't impressed with the way the ward had done several things, and as the meeting went on, she was obviously more and more determined to ensure that everything must now be put right. It is printed on the 'nursing report', very clearly, that Mil is under a section 3, however - and I have a copy of them, so whether or not they can find the missing notes on the capacity/best interest meetings, the fact that she is under a section 3 is in black and white.

    It was also confirmed that Mil had had pneumonia, and I was given more of an idea about the behavioural issues that are such a problem at the moment. The have Mil on '15 minute intervention obs' -every 15 minutes, a member of staff is spending some time with her in an attempt to stop the 'paranoid ideation' (thats a new term to me!) and agitation developing to the point where she becomes physically and verbally aggressive. And that it was sometimes - but not always - successful. I was told that she has a 'poor relationship' with several patients, that she is irritated by the confusion and sometimes 'odd' behaviour that they display (She can't recognise, of course, that she has very similar issues) and that she will get aggressive with them. And that unless she is occupied, she can become 'very busy' about what is happening with other patients if she decides that they need help, which can lead to aggression with staff. On top of that, the wanting to leave to go home or to go to work is a daily occurance when sundowning starts at around 4pm, and that also leads to verbal and physical aggression. Throwing things is a current, big problem - as is her using her zimmer frame as a 'weapon' - she attempts to hit people with it, throw it at people - or lift it up and bring it down forcefully on people feet!

    Whatever they now decide about who pays, at the moment its all dependent on how Mil is for the next few days that will determine if she moves early next week. Yesterday, I was told that she seemed to be having the first 'reasonable day' she had had since returning from the medical ward - she had been calm and compliant. If that continues, there will be no problem with the move. If it doesn't, there will be another meeting to decide 'what next'. All we can do is wait and see.

    I have to fly now, as I have an early meeting with work today, but I just wanted to let you guys know how yesterday went - thank you so much for all the good wishes and support. It really does help me cope xxxxxx
  7. MrsTerryN

    MrsTerryN Registered User

    Dec 17, 2012
    Sounds incredibly complicated Ann. Hope the funding is sorted. .kinda glad we don't have that here.
  8. jugglingmum

    jugglingmum Registered User

    Jan 5, 2014
    sounds like you weren't told what the meeting was really about.

    Based on everything I have read on TP I can't see s117 being withdrawn, and not worth worrying about.

    It sounds like MIL is now behaving in a way you had to cope with for a very very long time. I know it is awful for her and you, but better this behaviour comes back in hospital than care home and she is returned to hospital.

    I will try and post later on everything else (promise)
  9. Slugsta

    Slugsta Registered User

    Thanks for the update Ann. It must have been hugely frustrating to realise that the purpose of the meeting had been misrepresented to you :mad: I'm sure you have little interest in who pays for MIL's care as long as someone does!

    In a way, I'm very glad that the hospital have seen what you had to put up with - although I know they were amazed that you had coped for so long. I think it is possible that the worsening behaviour was due in part to the infection, in part due to the antibiotics and also partly down to the move to the medical ward and back. I hope that she continues to settle and is stable enough to go to the CH as planned next week - and that everything that has to be done clerically to make that happen is done and dusted by the time she is ready to go!

    Did I tell you that I had a call from the DC to say that Mum's continence is a problem and they didn't have any pads etc for her? This is after I have, twice, phoned them and asked whether they are coping and was there anything they needed! I pointed out that there is always a pair of pull-ups and pack of wipes in a little bag in the basket of Mum's walker. I had told them this previously but the message had not been passed on. Of course, when they ask Mum, she says she doesn't have any spares. I have to drive Mum to DC next Tuesday (she has an appointment about her lost hearing aid first) so will gladly take in a pack of pull-ups - but it is another situation where messages are not passed down the line to the people who need to know!

    The other situation where communication is difficult is with the carers. For instance, we left messages in my book, on top of the washing machine and in their own records saying 'Washing machine broken, please do not use' but hubby still went in on Monday and had to bail out the water as one of the carers had put a load on to wash! I phoned the office and it seems that the only way to be sure messages are givenm to the people who need them is to phone up and they will send a text out to all carers :rolleyes:

    Anyhoo, this kind of thing is frustrating, but it's certainly not the end of the world, nor the worse thing people have to content with. For instance, my best friend's mum is in hospital following a stroke and being given palliative care only :(

    Hoping that you are all having a good day xx
  10. Onlyme

    Onlyme Registered User

    Apr 5, 2010
    #6330 Onlyme, Oct 27, 2016
    Last edited: Oct 27, 2016
    Ann, what you took part in was filling out the assessment for the 61 page CHC application. I would hazard a guess that SW has her on a Section 2 on her paperwork not a 3. If MIL was in my area then she would need 5/5 severe to get funding.

    The SW must be hopping mad that she has spent 3 hours filling out CHC if 117 is going to be applied. She will want CHC to foot the bill and NHS will want MIL to pay from her savings. No doubt they will try to tell you she needs social care or some other pile of steaming poo.
  11. RedLou

    RedLou Registered User

    Jul 30, 2014
    Gosh and treble gosh. --I have popped in to catch up and just wanted to send love and support to you all.
  12. Spamar

    Spamar Registered User

    Oct 5, 2013
    I think I've mentioned my friend with pancreatic cancer? She died this morning. Very fit, she was younger, always ate well, walked her dog every day. Upset.
  13. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    Spamar I'm so sorry to read of your friend. How terribly sad.
  14. Harrys daughter

    Harrys daughter Registered User

    Jul 12, 2016
    Spamar I send you my condolences this is heartbreaking news x
  15. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    Spamar, I am so sorry to hear your news. Certainly I remember your stories about your friend. Please accept my condolences.
  16. Slugsta

    Slugsta Registered User

    Spamar, I am so sorry to hear about your friend. Am sending you much love xx
  17. Onlyme

    Onlyme Registered User

    Apr 5, 2010
    How very sad, I am so sorry.
  18. allchange

    allchange Registered User

    Nov 29, 2015

    Local authorities are ultimately responsible for S117 placements but the funding of them is split between the LA and health. I believe this is often subject to local agreements on how the split is determined.. In my area the CHC process is used to determine how much the Health authority pays towards the S117. I believe the Council pays the full fee and then recharges health for their share. This is not CHC even if the CHC process is used to determine the split, and can only be removed if all parties (bar the PWD/their representatives) agree. In the unlikely event of it ever being removed then you'd have to appeal.
  19. 2jays

    2jays Registered User

    Jun 4, 2010
    West Midlands
    Hugs spamar

    Sent from my iPhone using Talking Point
  20. RedLou

    RedLou Registered User

    Jul 30, 2014
    So sorry to hear your news, Spamar.

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