Mum always in distress.

Discussion in 'I care for a person with dementia' started by alang, Mar 1, 2018.

  1. alang

    alang Registered User

    Jul 31, 2017
    23
    Male
    Leicestershire
    Yes, don't be afraid to badger the life out of social services. It's the squeaky wheel that gets the grease!
     
  2. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    4,866
    Cotswolds
    @alang
    I can't believe I haven't found your thread before! I've just read back to the beginning and your situation reminds me so much of mine when mum was at home in her flat (she has been in a care home for the last three years). Like you until recently, I was round at her flat pretty much every day, for most if the day, in addition to her having four care visits a day. I was beyond desperate. Mum wasn't eating or drinking enough, wouldn't wash ior change her clothes, was doubly incontinent every day and had no awareness of it. Three times in the space if as many months she was taken to A & E following falls and dehydration. Three times she was sent home as being able to manage....:mad:
    No social worker ever suggested that I take a step back, and the CPNs didn't do home visits. The GP declared himself 'at a loss as to how social services make their decisions'. I wrote lengthy emails to them detailing mum's plight, to no avail.
    Sometimes it takes just one or two professionals to finally understand the situation, and be willing to put their heads above the parapet. My first saviour was a hospital OT, who on mum's fourth A & E trip, asked her a follow up question to whether she'd like to go home (to which of course she always said yes). Quite simply, she established that mum wasn't talking about her flat, but somewhere from her past, probably her childhood home. She then asked her 'whether she'd like her daughter to speak for her'. Mum said yes, and bingo, the OT recorded 'Mrs B is mentally unable to make decisions about future care and wishes her daughter to speak for her'. It was a small chink in the armour of bureaucracy, but a significant one.
    Our next saviour was a nurse on the A & E assessment ward, who agreed to a meeting with me, at which mum made her usual 'we manage fine, don't we Lindy' statement about home. Somehow I found the strength to say 'I'm sorry, mum, but no, we don't' ;) I cried, she cried.....and the hospital kept her in. A referral was made to the hospital social worker, who was wonderful, applied for and got funding for us quickly (as she had to, mum being seen as a bed blocker helped in that regard). Within weeks mum was safe and well cared for in residential care.

    I am really glad that the social worker helped you to get some free time so that hopefully you are not driven up against a wall as I was. And I hope your CPN is able to make progress with social services and others, as our OT and nurse did.

    Wishing you all the best.

    Lindy xx
     
  3. alang

    alang Registered User

    Jul 31, 2017
    23
    Male
    Leicestershire
    Thanks Lindy, There are indeed so many parallels between your situation & my own, although I must say you seem to have faced a few more challenges along the way. Thankfully mum hasn't reached the incontinence stage - yet, although there have been 'accidents' - which of course ''Must have been someone else''. And I think eating could well be a problem before long, because I find things the carers have prepared tucked away in the cupboard. And again, as you say, mum presents such a believable face to the social workers when they do an assessment that they can't see a problem. Mum is still very articulate, also speaking confidently about wanting to stay at home. Of course they've switched off when she adds ''I come here during the day, but have to go home at night to look after the children, because my parents are away''. I think the most recent social worker was the first one to see through the smokescreen.
    If it wasn't for the fact that the door is locked mum would have been out of the flat & in danger umpteen times by now and surely in residential care on those grounds alone, but I couldn't allow it to happen by deliberately putting her at risk.
    The 'days off' I get from visiting mum are an absolute godsend. I was getting seriously stressed before. She's still on my mind when I don't visit, of course, because I'm always waiting for the next crisis to arise & I probably drive the carers mad with my notes about things. They really are brilliant, but with only 30 minutes for some visits & 45 for others, and more clients to get round than just my mum, they can't be expected to remember everything.

    Thanks so much for your good wishes, Alan xx
     
  4. Sirena

    Sirena Registered User

    Feb 27, 2018
    204
    Female
    Alan, are you saying your mum is locked in when she's on her own? I had this dilemma with my mother, my mother started wandering and her neighbours wanted me to lock her in 'for her own safety'. But that isn't allowed when they are on their own, as they need to be able to get out in case of fire/other emergency. We locked the back door but she could still get out of the front (and did). When she was a couple of yards away from her flat she had no idea where she was, went out with no coat, in pouring rain, had to be rescued by neighbours. It was one of the main reasons she is now in a care home.
     
  5. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    4,866
    Cotswolds
    Excellent point @Sirena
    Do SS know this is happening @alang ??
    Certainly don’t blame you for doing it in the circumstances - I was ‘lucky’ my mum was less mobile - but she was still at risk in case of fire. Is there a central fire alarm system in your mum’s flat? If so, who does it connect to?
    Don’t want to worry you, but it’s yet another risk to consider.
    Lindy xx
     
  6. Sirena

    Sirena Registered User

    Feb 27, 2018
    204
    Female
    I agree @Lindy50 I don't blame Alan either. It's so hard to work out the right thing to do.

    We (supposedly) resolved the problem with a Careline monitor on the front door, plus a tracker device. The monitor alerted a call centre who reminded her to go back into the flat. If she ignored them, the tracker was supposed to enable them to track where she'd gone (but she took it off and put it on the table as soon as the carers left so it wasn't much use!) My mothers carers organised the monitoring system, it was a council run scheme and because she had dementia it was free of charge. It was only a stopgap as she wasn't safe to be left alone, a few months later she moved to a (self funded) care home.
     
  7. alang

    alang Registered User

    Jul 31, 2017
    23
    Male
    Leicestershire
    This is indeed a terrible dilemma. Yes, social services do know about it. So long as I say the words ''there is a key available to mum'' they seem reasonably happy to tick their box.. They seem more concerned about the infringement of liberty than anything else. The key is in the kitchen cupboard, with a large key fob marked Front Door & I'm sure mum's seen it but she's never used it. If I left it out mum would be forever out & getting lost & goodnes knows what else. If I left it in the lock & mum locked the door, leaving the key in, the carers wouldn't be able to unlock it from the outside. We tried the speaking reminder gadget on the door. Mum takes no notice of that. There is a smoke alarm linked to the lifeline system, so if it goes off it automatically alerts the control centre. I've minimised risks as much as I can - mum has no gas in the flat, doesn't smoke & there are no cooking appliances apart from the microwave which she's never touched. I know this doesn't account for all fire risk though, obviously. And mum can open the windows - it's a ground floor flat. I started locking the door when mum went out in the small hours last october, in her nightie, in the rain. fell over, grazed her arm, lost her handbag. Fortunately she wasn't out long - a police car attending another incident (probably the one that woke mum up) spotted her. She must have remembered my address, because they drove her round to me, wrapped in a foil blanket. I really don't want that every five minutes, never mind the danger she'd be in. But no, it's not ideal.
     
  8. Sirena

    Sirena Registered User

    Feb 27, 2018
    204
    Female
    As you say, not ideal, but it's about managing risks and you have obviously given it a lot of thought and have dealt with it really effectively.
     
  9. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    4,866
    Cotswolds
    I can’t think of anything more you could do, @alang , given that SS don’t consider your Mum eligible for residential care.
    Wishing you well and hoping that CPN can achieve something for you and your mum
    Lindy xx
     

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