1. Q&A: Looking after yourself as a carer - Friday 25 January, 3-4pm

    As a carer for a person living with dementia, the needs of that person will often come before your own, and this can mean that you don't always look after yourself.

    However, it's important for both you and the person you care for. But how do you do that properly?

    Our next expert Q&A will be on looking after yourself as a carer. It will be hosted by Angelo from our Knowledge Services team, who focuses on wellbeing. He'll be answering your questions on Friday 25 January between 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

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
    44
    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
    5,287
    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
    44
    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
    608
    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
    5,287
    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
    608
    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
    44
    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
    608
    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
    5,287
    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
     
  10. alang

    alang Registered User

    Jul 31, 2017
    44
    Male
    Leicestershire
    After calling social services a couple of weeks ago to try & find out where we were in the queue, so to speak, and being told in as many words, ''When you reach the top of it we'll let you know'', quite out of the blue I received an email from mum's original social worker suggesting a couple of dates for her to visit us. This visit took place yesterday & the outcome was that they are happy for mum to spend a couple of weeks in a care home, to see how she feels about it & then, if she'd like to, she could stay permanently. They seem to have accepted the report of the CPN, that mum's mental wellbeing is suffering by being alone so much, & agreed that there's not a lot more that can feasibly be done whilst she's still at home, to alleviate this. Mum chatted away quite happily to the SW, telling her all about me (her brother), her son, & her carers (who are nice but never come). She agreed that she might like to try the care home for a couple of weeks. Of course half an hour after the visit she got highly annoyed about 'that woman who came this morning' who wanted to put her away, and vowed never to agree to such nonsense! Anyway I am to await a call from the care home manager very soon, to discuss either coming out & meeting us, or us going to visit. Then, possibly as soon as next week, mum could commence her initial stay.

    So, on the one hand I'm quietly optimistic, but on the other quite worried that when it comes to it mum will steadfastly refuse to budge. And, as if in sympathy, the washing machine promptly broke down!
     
  11. Helly68

    Helly68 Registered User

    Mar 12, 2018
    168
    My Mum attended a care home for sessions during the day - like daycare which we paid for, as we were told we couldnt access council run daycare (even if we had paid) and this helped her to transition from living at home to living in in a care home. Perhaps if you take it one day at a time. It really does sounds as though you have exhausted home-based interventions
     
  12. Sirena

    Sirena Registered User

    Feb 27, 2018
    608
    Female
    That sounds like real progress (fingers crossed). It is probably best not to mention the care home stay again except when necessary e.g. for the assessment. If you discuss it regularly you will get different answers each time, and it could become fixed in her mind as a negative. On the day of the move, I told my mother she was going on a break and kept it all very cheerful and jolly so she saw it as a positive. Say/do whatever you think will work best for her.

    Has it been referred to as a care home or is it being referred to as 'somewhere to stay for a break'? My mother's CPN asked if she would like to go and 'stay with other people for some company'. (She said 'no', but yes and no were pretty interchangeable for my mother, and she actually loves the CH.)
     
  13. alang

    alang Registered User

    Jul 31, 2017
    44
    Male
    Leicestershire
    Fingers crossed indeed! Mum has already read between the lines about the 'nice break' but has grudgingly agreed to going to visit, to see what she thinks. She's cottoned on to the fact she may be expected to stay permanently after her two week's respite stay. Even so, she still recalls that she enjoyed it last time which in itself is amazing. This time it's a different home, but it comes highly recommended. I must say that the SW was brilliant in the way she put the case to mum. I really hope we can get through the next week or so with this & at least get mum there for an initial couple of weeks. I'm beginning to do some daft things myself lately with no explanation. And the laptop has joined the washing machine in breakdown. I'm currently trying to type legibly on a tablet......
     
  14. Sirena

    Sirena Registered User

    Feb 27, 2018
    608
    Female
    Your mother sounds a bit more on the ball than mine - although then again my mother only had a very short time to think about it, if she had dwelt on it for a week or two she may have become suspicious. Sounds like the social worker has done a good job - let us know how it goes.
     
  15. alang

    alang Registered User

    Jul 31, 2017
    44
    Male
    Leicestershire
    On Monday mum & I visited the care home & we were both very impressed. In fact mum carried on talking about it for the rest of the day. Yesterday the manager came out to meet us & did a full assessment and it has been agreed, subject to running it by the SW, that mum will commence her initial respite stay of two weeks on Tuesday next week. I'm quite optimistic about her enjoying it, because she did the last time she had respite, in March.
    I'm a bit unsure of how to read the situation however, with what happens after those two weeks. The SW will visit during the second week to see how things are going and to consider if mum would be happy to stay there on a permanent basis. The care home manager seemed to suggest, discreetly, that this was the way it's done - get mum there for 'respite' and let it become permanent without too much fuss. Is this the way? I'm worried about the scenario of mum having to return home & the whole thing having to happen again a few months down the line. Mum had been quite distressed yesterday morning - the carers rang to say she'd been banging on the windows, saying she couldn't get out. She does this because she believes her boyfriend is outside & is about to leave her. In fact when I was there later on she perceived me as the boyfriend & got most upset & angry about me leaving, because I'd mislead her into thinking we were a couple. Were she to return home after her stay I'm not sure how much more of that I could cope with.
     
  16. Sirena

    Sirena Registered User

    Feb 27, 2018
    608
    Female
    Yes, I think so. The CPN and SW both agree she needs to be in a care home and this respite is a 'soft landing', she will stay there unless there are compelling reasons for her to leave.
     
  17. alang

    alang Registered User

    Jul 31, 2017
    44
    Male
    Leicestershire
    I hope so. The SW did say on her visit that there's not an awful lot over & above what they already do for mum at home. I'd asked about 'sitter' visits previously but she seemed to suggest that, for the amount of time needed to be of any benefit, they just wouldn't be practical. I'm pretty sure mum would thrive in a care home, with 'stuff' going on around her. And I do admit that I would have a much better relationship with her if I didn't have to be constantly busy when I went to see her.
     
  18. canary

    canary Registered User

    Feb 25, 2014
    7,975
    Female
    South coast
    This sounds like it would be the ideal solution, then @alang
    I just hope the SW is in agreement too.
     
  19. Toony Oony

    Toony Oony Registered User

    Jun 21, 2016
    336
    Hi @alang
    Respite, 'morphing' into full time residential, is exactly what I arranged for my Mum.
    It was seamless and after a couple of initial dodgy respite days, everything settled and Mum did not once mention her old home since she first moved into the CH well over a year ago. I so hope that this can happen for you and your Mum too.

    Although problems occur and you never stop being worried for them, each visit isn't the constant 'fire-fighting' of when they live independently. This means that you can enjoy time with your PWD, and let the CH deal with the nitty-gritty.

    Fingers X'd that this works well for your Mum and yourself.
     
  20. Sirena

    Sirena Registered User

    Feb 27, 2018
    608
    Female
    I think the SW sees that she needs company 24/7. I had the same issue with my mother, she had 6 hours per day of homecare, but that still left 18 hours when she was alone. My mother lives in 'now' so once the carer left she had no idea if she'd been alone for five minutes of five days. Hopefully the care home will make things easier for both you and your mother.
     

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