1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

  1. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,173
    I like that - oxygen mask... I might ask to have laughing has put in with mine!
    Need a good laughing session at the moment, release all those good endorphins!!
    Thanks @Jenni_B for understanding the M.E thing. I’m maxed out on meds to help me stay awake during the day but am always mentally fatigued & physically well let’s say it is what it is....!
    Yep I’m officially burnt out by this situation, two nervous breakdowns last year & I feel as if I’m walking a tightrope continually. So somethings got to give ....
     
  2. Jenni_B

    Jenni_B Registered User

    Aug 24, 2019
    65
    Female
    France
    Laughing gas - great idea! :)

    Something's got to give, and it must not be you. Take care.
     
  3. TNJJ

    TNJJ Registered User

    May 7, 2019
    470
    Our dad could be brothers! My dad is VERY much aware of the "game"!
     
  4. TNJJ

    TNJJ Registered User

    May 7, 2019
    470
    I'm off to Switzerland on a one way ticket .
     
  5. TNJJ

    TNJJ Registered User

    May 7, 2019
    470
     
  6. TNJJ

    TNJJ Registered User

    May 7, 2019
    470
    Mine is "Here we go again"!
     
  7. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,173
    Another phone call this afternoon from Aged mother wanting me to make phone calls on her behalf....... I didn’t bother to say it’s bank holiday Monday, just yes I will do that for you.
    Aged Mother still on antibiotics she tells me, she says she’s feeling awful !!
    Asked me again how I’m feeling, do I feel any better ? Followed by I’m not good you know, I’m very unsteady on my feet. I don’t feel well.
    Oh dear here we go again !
    I really don’t want to have the “I’m not able to look after you Mum like the carers do” conversation everyday, but I don’t seem to have a choice.
    Major guilt trip & another sleepless night!

    Annoyed with myself as with the help of my Access to work support worker today I collected driftwood for my artwork, finished designs after Support worker went, had coffee, laughter & lovely chat with next door neighbours that I haven’t seen for 4 months; then did research for design work & now stressed out after fielding phone calls from Mum!
     
  8. Jenni_B

    Jenni_B Registered User

    Aug 24, 2019
    65
    Female
    France
    So unfair when small, good experiences get wiped out by something like that phone call. Must be very hard, if not impossible, to not let her comments get to you.

    You've probably already tried just about every technique under the sun, but have you tried visualising yourself in a protective bubble? It can take some practise to go "Shields Up" quickly (like for an unexpected phone call), but the idea is you imagine forming a bubble all around you (including over your head and under your feet). You can paint it any colour you like but will still be able to see through it. Make sure there aren't any gaps. It lets good energy in and out, but any bad energy coming from outside will bounce off it. The idea being that you will still hear your mum's words, but the bad stuff that comes with them can't get through. I guess it's just a psychological trick, but works for some people. If nothing else, it might help dampen the effect of her words a little, either over the phone or face to face.
     
  9. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,173
    It’s a good psychological trick, & I will try the visualisation - along with the floating up & above the situation in the bubble. Some visualisation techniques suggest imagining yourself in a giant bubble like the ones children & the young at heart blow. That reminds me ....I have several bottles of bubble mixture left over from sons emigration party last year.

    Just like a bit of twinkle(glitter!) your never too old for bubbles!
     
  10. TNJJ

    TNJJ Registered User

    May 7, 2019
    470
    Mine is to “Step outside of the “box.”It seems to work for me.I can see/hear the game but I don’t have to play it.Plus dad no longer phones me(because I’m always there apparently)
     
  11. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,173
  12. TNJJ

    TNJJ Registered User

    May 7, 2019
    470
    Yes that’s what I thought :(
     
  13. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,173
    So Aged mother cancels carers coming in at lunch time, turns off central heating & tells everyone the boilers broken!!!


    Guess what I’m doing today - phoning around & emailing SW, carers & GP.
    :confused::confused::confused::confused::confused::confused::confused:
     
  14. jugglingmum

    jugglingmum Registered User

    Jan 5, 2014
    5,192
    Female
    Chester
    Don't rush - it is not so urgent you need to do it today. The sooner a crisis happens the sooner your mum will get the help she needs, which sadly means the less you do the better.

    When crisis happened we discovered my mum had turned her electricity off at the meter, we think at least 18 months before hand, from what we could piece together the police knew about it, and we think so did SS, but she was deemed to have capacity to make her own decisions even if they were bad decisions - I do really struggle with this definition of capacity:eek:o_O

    (we didn't visit her, she always visited us - her house wasn't suitable to visit - I presume due to mental health issues and had been this way when I was a child)
     
  15. TNJJ

    TNJJ Registered User

    May 7, 2019
    470
    Gp is going to see dad today.I have spoken to her on the phone.She is “popping in” to check his moods etc.I have prewarned her about his hosting.It will be interesting to see what happens.She knows about “fluctuating capacity “so at least that is something.
     
  16. TNJJ

    TNJJ Registered User

    May 7, 2019
    470
     
  17. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,173
    Ok I’m going to sound a little irrational & hysterical for a while !!

    Since before 10 am have been trying to convince the “powers that be “ that my self funding Mother isn’t getting the care she will be billed for!!!
    If one more person tells me in a condescending voice that I’m mistaken ... .........I don’t think I can be held responsible for my actions!!!

    The everlasting merry go round ( no magic here I hasten to add for those of you of a certain age, or who can remember!) of being told I’m sorry you are mistaken!

    Actually no I’m bloody right, but I don’t expect an apology for the weeks of distress & confusion that have been created by the powers that be!
     
  18. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,173
    Breathe....
    ...... so I started work earlier so I could hopefully email a few people just confirming what care was in place ... you know the saying “ dot the i’s cross the t’s”. Just so when Aged Mother rings again distressed, confused, agitated 125 miles away plus - I had the correct information to give her.

    Actually I didn’t expect to spend my day frustratedly being told I’d got it all wrong only to find that - NO I’D GOT IT RIGHT!!
     
  19. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,173
    .......be warned I’m trying not to sound like a harridan or just certifiable hence separating the posts!!

    If it wasn’t for a lovely trainee at the care agency I’d still be trying to prove what had been put into place by Social services etc.

    So heads up folks

    Original care package pre hospital discharge 3 visits a day to be funded by Social services - yep first question community nurse asked “ who’s funding this”

    Nearly 2 months on & still it’s a muddle.

    Unbeknown to us at the time on discharge from hospital Aged Mother informs SW within 3 days of discharge that she finds the carers intrusive ~ so SW cancels lunchtime carer.
    carers have 2 visit contract now.

    So from 3 to 3 - following me so far??

    Aged mother gets UTI again, carers concerned & raise queries with GP, ask for home visit. Community nurse starts calling unbeknown to us & the carers!!
    Community reinstates 3 visits a day care package as she believes it’s the original contract pre - discharge, not being aware that SW & mother agreed 2 visits a day!

    Still following so far ~ care package 3-2-2

    Another UTI & paramedics called out- paramedics call me late at night & day Aged mother refuses help but they are raising welfare issues.
    The saga continues.....
    aged mother not responding to antibiotics, care team on the ball & chase GP for tests, no response!
    Unbeknown to carers, family, neighbours, community nurse & even the damn cat Aged Mother’s GP visits & states nothing wrong with her just age - “frail” was the medical term used in the email ( first for everything! Woohoo!) I received from the GP.
    Umm ..., same Aged Mother that was so poorly that the community nurse rang the same day & asked me to comedown & look after her as she shouldn’t be on her own!! Or I could have her to stay with me until she” picked up “ oh & was I aware that whoever did Mums shopping needed to purchase lots of incontinent pants as she’d used the large months supply sent back with her from the hospital within less than 10 days ; oh even better I was told I might have to double up the pants as Aged Mother was so incontinent it was flooding !!!
    No not happening so community nurse says she will sort it out & I ask her to let me know what’s happening as no transport until OH gets back late that night.

    This is the same aged mother who carers written statements say she was off her legs for 4 days!!

    So next day OH & I travel to find Aged Mother sat in soiled bedding & pads, no carer & hadn’t seen anyone since the GP called in & said she was fine.
    Just to recap off her legs, raging temperature, raging UTI, sat in soiled bedding since carer came in at tea-time.Alone all night since the last carer came in & raised concerns about Aged Mother’s welfare & safety, & now no more antibiotics as GP said she was fine just frail.


    Carer arrives, horrified at Mums worsening condition ( fortunately for the carers they document everything!) sorts Aged Mother out & asks us to call 111 for out of hours GP while she rings in her concerns to the office
    Ask carer how many times a day they are coming in- still 2.

    Meanwhile we have emails from SW to carer stating 3 times a day as UTI, off her legs etc & the reduction of care package was not working

    Still following ...,
    Many hours & phone calls later another carer turns up .. Result we think !! WRONG unbeknown to us it’s an agency community nurse arranged by the community nurse to cover her over the weekend!
    So still on 2 visits a day care package

    When the 3rd carer turned up around early tea -time ...... fortunately old habits die hard ... I asked what times they carers would be with Aged Mother?
    Imagine my shock when it turns out that Poor Aged Mum wouldn’t see another carer until mid morning the next day.

    So that’s how the care package contract issues were brought to our attention!!

    Resolution care plan 4 visits a day from carers, any change & we’d be notified before hand!

    Out of hours GP more antibiotics, & Community nurse visits as well!!
    Sorted!!!
    wrong.....

    FAST FORWARD another few weeks more antibiotics, more UTI’s, more visits from God knows who working for God knows whom. Only the care agency fill in the book so we have no idea what’s happening at least we can keep Aged Mother company in that!
    TODAY after weeks of emails like a returning curse “CONTRACT FIASCO” returns to haunt me!

    Days of phone calls from aged mother distressed - no carers, emails confirming yet again Mum found 4 visits a day intrusive so reduced to 3; the mystery of the missing care package is solved!!

    Tah Dah!
    So thank you trainee carer, you are an amazing person for actually listening to the facts written in black & white in the carers notes

    Mum being charged for more care than she received.
    The contract in place was never changed after being reduced.
    No one let us know until after the changes to care plan had been put in place. All these UTI’s & issues could have been advised if the concerns the family & cares raised were actually taken seriously. It’s hard enough dealing with the issues of dementia daily without this ineptitude!So exhausting having to convince certain people that they couldn’t organise a party in brewery.

    Outcome it is Only now is care package contract is in place for 3 visits,a 4th visit having been arranged & then cancelled by Aged Mother through Social services isn’t possible now due to staffing issues!!! So here we go again another UTI no carer in from mid afternoon & to just ice this little mess .......
    Still no referrals to -
    -Memory Clinic
    -Physio
    -incontinence team
    - or psychiatric nurse & team
    Etc

    Add insult to injury ... I have emails stating that all this has been done!

    Actually got fed up of being pushed pillar to post & rang Dementia team direct ......
     
  20. rainbowcat

    rainbowcat Registered User

    Oct 14, 2015
    131
    Female
    #200 rainbowcat, Aug 27, 2019
    Last edited: Aug 27, 2019
    I have experience of exactly this. GET A CAMERA (I recommend NEST) and a few days of storage with the service, and save clips to your computer all and every time(s) that they reckon they supplied. Also save any care visits where they reckon they spent 30 mins but only did 5. You will have proof/evidence that they aren't supplying what you/Mother is being billed for. The only issue is that if they turn up for a visit and she tells them to leave or not needed, that's HER decision which is still liable for full billing (for that visit).

    Unless you mean that she is being billed for care visits that haven't even been scheduled!

    EDITED - we cross posted and I see that YES you are being billed for erroneous care visits, ARGH. I hope others will help more and I would totally stick to your guns! That longer post needs to be made more concise and sent to all the relevant people.
     

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