1. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,293
    Female
    South of the Border
    You are absolutely right. There is a County Councillor - Claire Wright, who is really pushing for changes at Devon County in all aspects of Care and Carers. I attended a day long committee she had set up. If you want to contact her I can give you details - she is very proactive but the sticking point is a Head of Social Care for Devon, not long ago, and I quote, thought that " Only one or two carers in the county had problems" - this is such a hard wall to break through...... but I keep trying to do my bit......
     
  2. daveyshadow

    daveyshadow Registered User

    Jan 14, 2015
    30
    Hi @DesperateofDevon, I feel your pain, just been on the phone to Devon social services and been told we have to wait for MIL to fall before we can have her deemed unsafe at home. She gets her carers to help her on the stairs but if we or a GP ask if she is ok she will tell them there is no problem - "AAAARGh" She cooks microwave meals on the hob in a saucepan - can't see well enough to use a microwave - but no idea if food is heated properly, filthy clothes etc I won't bore you with more. There does need to be a fundamental change in how PWD and there carers are treated. The aspect that is really not dealt with is the impact on family and friends, the constant worry and what that is doing to their health.
     
  3. TNJJ

    TNJJ Registered User

    May 7, 2019
    348
    I have SS coming in to access dad next week.Guarantee they will speak to dad and everything will be ok.I am going to tell them that he is no longer walking and I am having trouble getting up from the wheelchair using a Sara steady.Dad has VD and is struggling to grab the rail and pull himself up..But of course he will be “fine “and won’t need any help...
     
  4. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,935
    Yorkshire
    hi @TNJJ
    beforehand, write out a list of all the tasks your dad can no longer do, everything he needs support with and all your concerns; keep a copy ... either get it to the assessor before the visit or hand it to them on arrival and work out a way to give them a chance to read it ... then, if possible, sit slightly behind your dad so you can signal when he's not being accurate without him seeing and/or make an excuse to get the assessor alone and be blunt about how things really are
    the value of the printed info is that you can refer back to the document later and no-one can say they didn't have that information
     
  5. TNJJ

    TNJJ Registered User

    May 7, 2019
    348
    Thank you.This will be the 2nd assessment so fingers crossed.I will do tomorrow
     
  6. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    719
    Sadly Mum doesn’t live in Devon, she’s 125 miles away
    Please do pass on her details as she may have contacts that could help
    Thank you for your support
    Nice to know someone is out there
     
  7. Champers

    Champers Registered User

    Jan 3, 2019
    116
    We had this for months when 90 year old MIL was in hospital. All the staff; ward, SW’s, OT’s etc who had 5 minute chats with her believed she knew exactly what she wanted when she kept saying she wanted to go home and was able to make a rational decision and that we obviously had an agenda. Someone on here gave me some excellent advice - ask her the address of her home. Immediately, MIL gave the address of where she lived 35 years ago and could not recall her current house at all! It wasn’t just a case of having forgotten the current address, she looked completely blank when we prompted her and then asked if we had cleared out her flat! She’s never lived in a flat.

    My own mother will chat to me on the phone about going shopping and walking home with heavy bags and how she waited ages for a taxi that never turned up. If someone didn’t know she had been diagnosed with Alzheimer’s, she sounds very credible and you wouldn’t doubt that she knew exactly what she was talking about.
     
  8. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    719
    I rang mum this morning & spoke to the carer, she has years of experience & can see dementia issues- possibly Lewy bodies.....
    .... my brain is numb from all of this

    Time to put myself first, me thinks!
     
  9. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    719
    So good morning ‘Fluctuating capacity thread’ we meet again!
    I’ve just popped over from ‘I’m just desperate ‘ to vent !!!
    Please bare with ....
    Phone call last night - Aged Mother

    Mum: I saw people walking around the garden last night again. I have proof as that large stone has been moved infront of the garden gate.
    Me:The high winds & flapping gate couldn’t be the cause ?
    Mum: I know how they are getting into the garden
    Me: How?
    Mum: They are climbing up the bank
    Me: No mum no ones wading across a four foot river to climb up a steep muddy 18 ft bank & then climb over the broken 6ft wire fence the last storm half blew down.
    Mum: annoyed noises
    Me: sigh
    Mum no ones doing that, apart from the badger you give your meals to instead of eating them!
    Mum: no it’s not a badger! well I’m going to sit up all night & catch the men walking around my garden.
    Me: ok, let me know what happens; but don’t go outside it’s wet & windy & you could fall & hurt yourself.
    Mum: no I won’t. It’s awful weather!

    So here we go again the start of the paranoia. The last course of antibiotics have been finished on Thursday - five day course from Saturdays out of hoursGP emergent call out - as seen in the ‘I’m just desperate thread’ & we are yet again I suspect at the start of another low grade UTI & the delusions are knocking at the door so to speak.

    It’s the fluctuating capacity that’s the issue as Mum isn’t able to make good decisions for her welfare - mind you in my opinion neither is her GP!

    I will let the carers document what they find without contacting them & alerting them to my worries; that way the GP can’t say I’m prejudicing anyone’s opinion.

    So I’m stepping back & letting my poor Mum have her next crisis; using this time to get my strength together for the next round of my “ My Mum has fluctuating capacity & needs a diagnosis”
     
  10. Joy1960

    Joy1960 Registered User

    Oct 29, 2018
    19
    Yes my mum!!
    Diagnosed last year with moderate AD..carers will ask her what she wants to eat..she will reply she's not hungry as she's eaten( she can really only make herself a cup of coffee already prepared and put jam on a scone), she doesn't use the cooker or the other stock answer is that I'm going back to sort her meal!
    She's very good at talking the talk and making her mouth say the things that she thinks are correct.
    My gripe is that the carers are supposed to be 'Dementia trained' but take her comments at face value and believe her!!
     
  11. Joy1960

    Joy1960 Registered User

    Oct 29, 2018
    19
    My mum has also just finished a 5day course of antibiotics for low grade chest infection..what a few days I had!!!
    Tried to get her to have a bath tonight..no chance..
    Said to her it's been a few days since you had a bath
    Mum...oh let's write it down in a book shall we!!
    She's left her sandals agh the side of her chair..
    Me ..il move those Mum as you tripped up last time and broke collar bone(sling for 4weeks and me staying over night for said 4weeks!)
    Mum..sighing...I won't trip up..leave them!
    I've left them and just keep picking up the pieces of this horrendous disease.
     
  12. TNJJ

    TNJJ Registered User

    May 7, 2019
    348
    Hi.Similar problems with my dad's carers..Every time they believe dad.I often wonder if they know about safeguarding ..I found out that dad is the worst that they have..Says it all really!
     
  13. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    719
    That’s hard I know, I’m fortunate as the care team seem to have the measure of Mum but I did phone them & speak about the issues we’ve had before they started.
     
  14. AliceA

    AliceA Registered User

    May 27, 2016
    2,359
    This is the hardest thing. Capacity constantly changing seems to make liars of us all.
     
  15. TNJJ

    TNJJ Registered User

    May 7, 2019
    348
    It does.I have SS coming tomorrow to assess him.I have emailed all my concerns to them,plus a few more .But I don’t hold out much hope for new equipment as dad is walking very occasionally with a gutter frame.But I will mention his collapse with me.But he will be in good “hosting”mode!
     
  16. Banjomansmate

    Banjomansmate Registered User

    Jan 13, 2019
    1,088
    Female
    Dorset
    I agreed with one of The Banjoman’s Social workers that she should visit him without prior notice - she found him wandering around his flat looking for the bedroom so that he could find some trousers. She then had to help him get dressed. When I arrived half an hour later she asked if he had deteriorated so much since the last time she had seen him. I said “No, he’s been like this for months, he just managed to hold it together for the short while when you came before”.
     
  17. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    719
    Always seem to do capacity tests on a good day; since they are getting fewer guess it won’t be long. SS asked Mum if she’d like to go into a care home?

    NO

    So let’s hope that they don’t reduce the care package again!
     
  18. TNJJ

    TNJJ Registered User

    May 7, 2019
    348
    Just come over from the “Vent” post.All went well.Dad on his good behaviour,which was a change..Dad was asked if he wanted to go in a home..Still No!I have asked the care company to reinstate his lunch and tea visits when I am there.His mobility is getting poor it is a struggle for me now..But,never seems to be a problem for the carers.
     
  19. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    719
    Ah yes, the worst example of Mums “ inability to walk” was when she was staying with us (a week turned into a month!!) Ended up calling the Dr on call who requested an ambulance, hours later paramedics came & Mum stood on each leg like a flamingo!

    That episode now known as
    FLAMINGO GATE !

    Amazing how mobile they can be when they want to be!
     
  20. TNJJ

    TNJJ Registered User

    May 7, 2019
    348
    Yes it is.Dad keeps saying “I’m going to try and walk without a frame “(He has a gutter frame and leans forward so much,he is like a question mark).My reply”You can do that with the carers “Never going to happen.Yesterday,he couldn’t walk with the frame and me...
     

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