I just need to vent

Discussion in 'End of life care' started by Evie5831, Jul 27, 2016.

  1. Evie5831

    Evie5831 Registered User

    Nov 7, 2015
    108
    Dad has been off of IV antibiotics for three days, day before yesterday we were told he was bed blocking and would be moved to another ward while it was worked out " exactly what needs he has that mean the care home won't have him back" as he is "medically fit" today we go in, he is screaming (genuinely has never really raised his voice in 88 years) and back on IV antibiotic, even stronger ones. Doctor says this will keep happening until his baseline stops being able to be stabilised ( what does that mean and what does medically fit mean for that matter?) each time we have discussed palliative care we are told it isnt the right time, we are talking to the wrong person, only the SW can discuss that etc etc etc.
    I have contacted the Alzeimers Society and they gently told me I have no rights, nothing at all as we didn't get time to get a PoA ( Dad fell down, when he got up he was no longer able to make his own decisions- yes that fast!) they recommended calling the Admiral Nurses to see if they will let us know what the criteria is for asking the doctors to consider not giving more IV antibiotics
    I not only feel totally useless I have now been told I am!
     
  2. Red66

    Red66 Registered User

    Feb 29, 2016
    363
    Oh Evie you are having a bad time to say the least. I have no advice on this one but I do wish you strength. Is it the same doctor you are dealing with each time?
     
  3. Evie5831

    Evie5831 Registered User

    Nov 7, 2015
    108
    Different doctor today as Dad moved ward yesterday. Went in to him tonight and he was at least calmer, can't say anything better than that. Thanks for support
     
  4. LadyA

    LadyA Registered User

    Oct 19, 2009
    13,469
    Ireland
    Oh Evie. I'm utterly shocked.
     
  5. Red66

    Red66 Registered User

    Feb 29, 2016
    363
    How are things Evie?
     
  6. Evie5831

    Evie5831 Registered User

    Nov 7, 2015
    108
    Hi Red,
    Dad comes off of IV antibiotics tomorrow and the doctor reckons it is just a matter of time before it all happens again. Looking for nursing homes with palliative care facilities but there are no vacancies atm in our area.
    Dad is now fully funded as his needs are now classed as very severe but just as I was beginning to draw a breath over that I discovered that the "top up" fees for nursing homes are very high, more than our current contributions to his care home in all cases A new headache to worry about. With all the heartbreak over Dad's condition the heartless comment "he is very sick, you won't need to pay for long" from the hospital over the top up fees has left me so upset, it's nothing to do with how much money we, as a family, are willing to pay and all about how much money we can get together to do so. The cheapest we have been told, subject to availability is £800 per month rising to £1120 at another home for the "environmental features" they have. Of course it's all academic if they have no places.
     
  7. Gwendy1

    Gwendy1 Registered User

    Feb 9, 2016
    414
    Glasgow
    Hi Evie, it's just terrible you have this stress in addition to worrying about your dad. I hope he's more comfortable and that you're coping okay. It really is beyond belief that we have to deal with looking for care, worrying about finances and listening to thoughtless comments from professionals (!) when someone we love is so ill..X


    Sent from my iPhone using Talking Point
     
  8. lemonjuice

    lemonjuice Registered User

    Jun 15, 2016
    1,535
    England
    #8 lemonjuice, Aug 1, 2016
    Last edited: Aug 1, 2016
    When you say your dad is 'fully funded' is that CHC?

    In which case I think the NH is trying it on, as it's my understanding that 'fully-funded' is full funding with no top up. necessary. (Though I'm prepared for someone to say different as we haven't achieved CHC yet.)

    Perhaps someone can direct you (and me for later)to the right publication/documentation.
     
  9. Shantipath

    Shantipath Registered User

    Aug 1, 2016
    8
    Brentwood, UK
    Hi Evie & Lemonjuice - Lemonjuice is right, if it is "fully funded NHS Continuing Healthcare" you cannot top it up and should not be asked to. If you Google "Is it possible to pay top-up fees for NHS continuing healthcare?" you will find a page titled NHS Continuing Healthcare on the NHS website, scroll down to the bottom of that page & the question is answered there. PS Sorry I can't post the link, I'm too new on the forum to be allowed!
     
  10. Evie5831

    Evie5831 Registered User

    Nov 7, 2015
    108
    #10 Evie5831, Aug 1, 2016
    Last edited: Aug 1, 2016
    Yep Dad is now fully funded and it is illegal for NHs to charge top ups for care however they are allowed to charge for other services such as laundry, newspapers, chiropody and haircuts. What I have found after talking to four homes is that they can ask what they want for these services and stay within the law. One home today openly said that social service doesn't cover all that residents need so they charge for the environment they live in ie the garden maintenance. I have queried this top up with the complex care team at the hospital and they have heard of top up fees in my area ( the south east) as high as £350 a week! None of this can be assessed for financial support as all care fees are paid and " if families want more for their loved ones than basic care" they will pay for it. So far I haven't found a NH in my area that doesn't charge top up.
     
  11. Evie5831

    Evie5831 Registered User

    Nov 7, 2015
    108
    It is one step forward and two back AGAIN. We were starting the gruelling process of applying for CHC when Dad took a dramatic and permanent turn for the worse and he was granted emergency funding. We were gutted at this turn of events but thought at least now he could have the care we had been fighting for but no, foiled again, there are no places available within a 20 miles radius atm although one helpful place did tell us to keep asking as by the nature of the care places become available all the time ( hmm helpful or tactless)
     
  12. lemonjuice

    lemonjuice Registered User

    Jun 15, 2016
    1,535
    England
    That is appalling!
    I agree extras like hairdressing, chiropody - sorry podiatry etc. are extras and should be paid for, possibly even laundry but garden maintenance? But what if the family can't afford it? I know we certainly couldn't with my mother when her money runs out. Would they leave nails unclipped?
    I know my mother's Nursing Home freely admits they use the self-funders and post hospital convalescents to finance those being paid for by SS.
     
  13. Evie5831

    Evie5831 Registered User

    Nov 7, 2015
    108
    They won't accept anyone that doesn't pay the top up so leaving their nails never becomes an issue!
    We have always paid for hairdressing, podiatry ( was showing my age there calling it chiropody) and other sundries separately at Dad's care home leaving a float in the office so are well used to this expense but not in these extortionate amounts and at such a difficult time, realising that if we can't find the top up money when a place becomes available he has to remain in hospital indefinitely
     
  14. Evie5831

    Evie5831 Registered User

    Nov 7, 2015
    108

    I looked up the link http://www.nhs.uk/conditions/social-care-and-support-guide/pages/nhs-continuing-care.aspx#faq



    It seems that the top up I have been talking about is covered by " you pay for additional private services on top of the services you get from the NHS. These private services should be provided by different staff and preferably in a different setting"
    As the word PREFERABLY is used it seems they can charge the money and rob grieving people with impunity.
     
  15. Red66

    Red66 Registered User

    Feb 29, 2016
    363
    Wow. These NH/Ch are businesses and bleed us dry when they can. They lack compassion and understanding and instead after money. I didn't have to deal with this as dad was sectioned and got aftercare 117 so fully funded. But what I do know is his NH (in North West) you can top up to get a room with a patio door and you can place money in his account for chiropody (that's what I call it!!), hair cuts, toiletries and a few other things, but it's not automatically expected. I do his nails and mum gets toiletries so we just opt for hair. Hearing these kind of stories make me want to swear!!!!! How can this go on??? I don't get it.
     
  16. tigerlady

    tigerlady Registered User

    Nov 29, 2015
    427
    If you have been granted emergency fast track CHC funding, then there should be no question of any top up, as the NHS pay and not the SS. My husband has CHC funding, but the only extras are toiletries, chiropody and hair cutting. If I understand you correctly, even though the funding has been granted, there are no places in nursing homes. Have you approached the hospices in your area who may have a place whilst waiting for a NH place? I do feel so sorry for you in your situation - hope a place can soon be found. Cant the nursing homes put him at the top of their waiting lists?
     
  17. Leswi

    Leswi Registered User

    Jul 13, 2014
    120
    Bedfordshire
    CHC can be used to pay for care at home too. I had a battle to get the amount of money needed but I won and have got mum at home on end of life care. I don't know if that is something you would even want to contemplate, just giving you another idea on how to get dad out of hospital if no places come up.
     
  18. Evie5831

    Evie5831 Registered User

    Nov 7, 2015
    108
    I wonder if my area is just more money grabbing than others but, so far, I haven't found anyone round here that doesn't expect massive top ups. I am waiting on call backs from two homes today, one of which is part of the group of homes that he came from so I am hoping that they follow the policy of their predecessor and we just put money in to the safe to deal with any extras he may need.
    He is at the top of the hospital list as far as I can make out and they are the ones sending me off to look at places, as they are funding, I go where I am told.
     
  19. Evie5831

    Evie5831 Registered User

    Nov 7, 2015
    108
    Home care is not something we could contemplate really, Dad needs someone with him 24/7 and all of us having reached a certain age that would involve two of us being there to lift and turn and change him. In addition to this, before dementia struck him down, he would have hated his all female family to cover personal care, we never even saw him in his PJs until very recently.
    So hard as my gut tells me, send him home and I will find a way to cope and then I think, just how can I do it when I am also caring for my elderly mum too.

    Why does everything sound like an excuse when written down!
     
  20. Red66

    Red66 Registered User

    Feb 29, 2016
    363
    It's not an excuse, it's life!! I have a 1 and 3 year old and I couldn't possibly look after my Dad. Very sadly life goes on and we have other commitments. That's that. Fingers crossed the original homes group comes up with the goods for you. Worrying situation as it is without sorting out a place for him to live and be cared for too. Feel for you xx
     

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