So is this it...?

Discussion in 'End of life care' started by DesperateofDevon, Oct 14, 2019.

  1. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,965
    So I can’t think of anyone else I can “pester “ about Dads care!!!
    Today I need to step back a little , I’m being consumed by both parents dementia situations!
    So selfishly today I shall be cutting wood prepping for seasonal art events I have paid for & booked.
    I have outstanding orders to fill & need to honour those - no payment is taken until completion.

    daughter should be home today ; but the lure of life & boyfriend I suspect will keep her away a few more days!

    husband is up North at work as well so I’m Jonny no mates! Work should be a release from the recent personal dementia crisis .................... I hope.......,
     
  2. Pete1

    Pete1 Registered User

    Jul 16, 2019
    255
    Male
    Good Morning @DesperateofDevon, I am deeply saddened to hear about your plight. This is simply unacceptable for your poor Dad and you. From what you have said they should have engaged palliative care protocols and Dad's GP should have instructed them on this. I assume you have had a one to one with the manager to raise your concerns? I feel for you, you are doing absolutely everything for your Dad and of course you can't switch off as at the moment you aren't getting the reassurance that you need regarding his comfort. Mum's GP had a lovely beside manner, yet was very direct with the Care Home about her expectations for palliative care. I can say one thing you are looking out for you Dad and you are doing him proud. I wish you all the best and hope you can get some resolution today.
     
  3. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    3,352
    Nottinghamshire
    Sending strength to you @DesperateofDevon. I hope the management come to their senses :mad:
     
  4. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,965
    @Pete1 @Bunpoots Dads GP has instructed them yesterday I was present. Yet still they are ignoring instructions....
    I have phoned the surgery to follow up my concerns today & now wait to see what happens.
    Alzheimer’s society help line fantastic as well thank you -really appreciate all the advice .

    it’s got to be resolved soon surely....
     
  5. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,965
    I have tried raising much minor issues with the management- & have been told I’m hysterical & histrionic!
    Then paramedics & doctors come out & support me &management seemingly try others to get the answers they want!

    system is failing our most vulnerable in society
    So sad
     
  6. Pete1

    Pete1 Registered User

    Jul 16, 2019
    255
    Male
    Hopefully the GP can get resolution, it certainly seems an extremely odd stance the Care Home are taking going against medical advice. It's a good job your Dad has you watching out for him - stay strong,
     
  7. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,965
    if the GP didn’t experience it himself I don’t think anyone would believe the sheer arrogance of the management....
     
  8. Fishgirl

    Fishgirl Registered User

    Sep 9, 2019
    123
    Just wanted to say, what a remarkable lady you are, even though you are going through this awful testing time yourself, you’re still finding the time and compassion to offer help and consolation to others.So to use one your favourite sayings....
    Take care my lovely, sending you lots of ((((((((((( HUGS )))))))))))xx
     
  9. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,965
    Unbelievable guess what’s been redirected from the home .......to me

    ......SALT assessment form ....

    Well I keep saying it is unbelievable I still am constantly surprised on a daily basis
     
  10. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,965
    thank you I don’t feel very remarkable just deflated that no matter what I do I can’t seem to get the help Dad needs
    Actually I hope that I can bring some relief to someone somewhere & I don’t feel so useless
    X
    Hugs appreciated
    Xx
     
  11. TNJJ

    TNJJ Registered User

    May 7, 2019
    797
    Female
    cornwall
    Bless you!As the home is now applying for CHC then they have/must be realising that it is required....
    I am amazed that the SALT team got it wrong.I wonder whether it was actually done by someone from SALT or over the phone..It doesn’t help I know but I am a quite cynical person me...
    I hope today improves for you..(((hugs))
     
  12. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,965
    phone call to home!
    So a senior member of staff told me that she applied with the manager for CHC funding - but the manager told me Dad didn’t need it or qualify.

    Im just exhausted trying to unravel the mess & find out the truth of the matter!
     
  13. Pete1

    Pete1 Registered User

    Jul 16, 2019
    255
    Male
    What a frustrating mess for you to deal with @DesperateofDevon, whilst your poor Dad struggles on oblivious to it all. It must be all you can do to keep your cool. The GP should be be controller of Dad's medical treatment and suggested care plan, if that is palliative care. From what you are saying the Care Home seem to be angling for additional funding, which is inappropriate at this stage. Could the GP not arrange for additional nursing care to attend for Dad?
     
  14. AliceA

    AliceA Registered User

    May 27, 2016
    2,519
    Poor you, yes, it is difficult to get through to some people. I wonder if the GP has much input. Really there come a stage when rest and sleep is all that is needed. Do feel for you. Xxx
     
  15. Dimpsy

    Dimpsy Registered User

    Sep 2, 2019
    611
    Female
    Keep going girl! Just think how awful if it would be for your poor dad if you weren't there to fight his corner, it doesn't bear thinking about.
     
  16. TNJJ

    TNJJ Registered User

    May 7, 2019
    797
    Female
    cornwall
    I bet you are! Sending hugs and hopeful thoughts..:)
     
  17. anxious annie

    anxious annie Registered User

    Jan 2, 2019
    180
    Sending you strength to get through this awful situation. So horrible to see your dad in pain and to be ignored by those supposed to help xx
     
  18. silver'lantern

    silver'lantern Registered User

    Apr 23, 2019
    160
    Female
    oh my days @DesperateofDevon how awful for you and your dad. I have just read through your thread. I really don't understand how the CH can go against all the support he should be getting! What gives them the right to do that! I feel at the moment you are at your tethers end, but he must be so thankful he has you in his corner. If he could I am sure he would thank you from the bottom of his heart.
    Everyone needs a D-of-D on their side! you are doing a great job even if sometimes it feels so desperate.
    I love how you have craft to bring you back down...I do the same. Craft is a great healer of frayed nerves.
    best wishes and hope calmer days are ahead.
     
  19. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,965
    Well this afternoon a social worker called to say they have been allocated the case! it seems a community nurse has had a lot of input already & has been asking social services if she is named in the safeguarding?

    since she went to the home & assessed Dad without our knowledge & then - told the old GP that dad didn’t require Butec patches last week ; & after cancelling our meeting weeks ago with her & telling me over the phone that there was nothing wrong with Dad & didn’t need extra funding...... I guess she’s brought herself into the whole safeguarding issue!

    As the social worker said probably not the best clinical assessment seeing as paramedics & New GP have been called out & Dads on higher Butec patch & oromorph, with reduction in medication due to swallowing issues!

    so I have requested that this community nurse isn’t part of a team meeting the social worker wants to call. As this nurse choose to disbelieve our concerns &informed the home of our concerns & together with the home management blatantly ignored Welfare & health issues.

    so requesting
    -SALT team assessment
    -O/T assessment
    -CMHT assessment

    before team meeting

    otherwise it’s back to our word against the homes observations. I feel without these assessments no one will believe us as I find it hard to believe this situation is happening myself.

    I haven’t gone in today - I just don’t have the energy to keep pushing forward through all of this at the moment. yes I feel very guilty - I have let Dad down today but I can’t keep doing this alone. My confidence has hit rock bottom today & I have tried to keep myself busy but I can’t stop worrying about what’s to come.

    The home are obviously not going to apologise or say hey we got it wrong let’s learn from this. The closing of ranks was obvious yesterday with staff making were they stood clear. ( I kept being told my Dad had a good appetite & had no trouble eating food- as he sat with a big plate of food infront of him & no idea what to do with it!)

    the home are saying their is no record of falls or Dad attacking anyone. I can’t believe yet again I have to prove I’m telling the truth... so my family will have to become more involved & give statements as to what they have seen & experienced.

    this situation has been going on for weeks now it’s only the intervention of an advocate that has led to today’s action by the safeguarding team. Otherwise we would still be struggling to get anyone to take action. yes I have that confirmed by the social worker that the big guns contacted them & all of a sudden we have action.

    I don’t want to compromise Dad by not having all the medical evidence to hand to prove the seriousness of his condition. The care home have badly let him down with ignoring his medical history & the family concerns.

    yesterday the request for a GP by the care home & them not letting us know demonstrated their arrogance & lack of compliance with the CQCs rules & regulations; the care home has an outstanding ( I would have previously agreed ) & best practice award.

    the huge changeover of staff isn’t a good sign in the past couple of months.

    I am dreading having to go through this process - I don’t feel that we have any options open to us.
     
  20. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,965
    the GP direct instruction was clear, as discussed with myself & OH. Backed up by the paramedics observations & new pain relief medication I can’t believe the arrogance & ignorance that they keep pleading.

    Even the GP had to go down to the office as Dads care plan wasn’t brought up to the consultation.

    if I’d had someone else with me I would have felt better, as it is I now won’t go into the home without another person with me

    that is no way to live, dementia is stressful enough without this .....
     

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