OMG it could not be any worse!! need advise please

Discussion in 'I care for a person with dementia' started by Angie1996, Dec 15, 2016.

  1. Angie1996

    Angie1996 Registered User

    May 15, 2016

    My dad has been confirmed end of life care, he is currently in hospital and was going to transfer back to his care home today for end of life care. I have just spoken to the hospital and now his care home are refusing to take him back due to all the conflicting advise from the hospital!!!!

    The hosp bed and equipment is ready in his room, however due to conflicting information they have now refused, this morning they were going to bring him back, but now they are not!!!

    I have formerly given notice on his room as of now, as he has to give 2 weeks notice.

    I have requested fast track funding and will find out hopefully this afternoon if he will get it.

    I think this will be turned down, I have told the hosp today that I will fight this, they call it "elderly care" I say he is dying from Alzheimers!!!! steaming is an understatement.

    Anyway I asked if the care home would take him back if extra funded care was put in place, and they still refused........(hospital asked me to do this)........

    I am so upset, I really do not need this now!!!!! what a mess!

    The hospital is now pushing for me to find a nursing home for him, but I am loathed to make any moves yet and considering I was told this news an hour ago, I cant believe how insensitive everyone is, what a load of politics!!

    What do I do now? do I rush and find a nursing home asap? do I take my time and look at them next week? (dad could be passed by then?) I cant believe what a bl**dy mess this is right when we both don't need it!!!

    They are going to put his catheter in again as he has not passed urine in 24 hours, and not eaten for drank for 48 hours.

    My heart is broken, I cant believe he has been turned away now.......I am in limbo, if I had my way I would leave him in the hosp, but they are pushing for me to get him moved asap, to a nursing home that he does not know, nor they know him...

    Can they force me? I have LPOA for finances? so if he is still going to be self funding, then I choose?

    I cant believe they would argue about funding at this stage!!! I have my fingers crossed he gets it in the next 2 hours.........

    I cant believe this mess sorry, I dont know who else to talk to, and really need advise on this
  2. SadScot

    SadScot Registered User

    Jun 28, 2016
    I am so very sorry to read this. It is unbelievable how insensitive the care system and NHS can be. Unfortunately I have no advice to give but just wanted to say I am thinking of you and sending you love and strength. I hope you manage to get this sorted very soon x
  3. Meppershall

    Meppershall Registered User

    Aug 16, 2016
    Angie, what a horrible situation to find yourself in. I am not able to offer any help I'm afraid as I haven't faced such an awful situation but have you contacted PALS in the hospital where your dad is and asked for their help ? I know you probably can do without seeking out the patient liaison people but they may be able to offer some much needed help and advice.

    Wishing you all the very best , much love x
  4. CeliaW

    CeliaW Registered User

    Jan 29, 2009
    So sorry to read this. Would it be useful to contact the local hospice for advice /guidance? Hugs xx

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  5. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    Angie have you spoken to the palliative care team?
  6. MollyD

    MollyD Registered User

    Mar 27, 2016
    Angie, this is appalling. I'm so so sorry.

    I do not know if it's similar in the UK as in Ireland but here you have a right to refuse to move a sick person if you feel they are nit fit to be moved or have nowhere to go that will cater to the person's needs. You can't take him home, so your dad is safer there for now.

    I would ask to speak to the SW and say as much. You can decide what to do later (if an alternative you are more comfortable with is offered). It's outrageous that you're expectected to find somewhere for your dad at this critical stage. What the f are they thinking. This is negligence.

    Do you know the content of the conflicting information the care home was given by the hospital?

    First things first, refuse to be pushed into moving your dad for now.

    Keep posting, you have support here. Keep posting when you can.
  7. Angie1996

    Angie1996 Registered User

    May 15, 2016
    The care home had everything ready, they have just informed me they had in total 27 phone calls from the hospital this afternoon regarding dad, from several different people.

    For example they were told he is eating a drinking by one nurse, even though he has not ate or drank for 48 hours.

    They are told he has passed urine without a catheter, but he has not passed urine at all since they removed the catheter at 12.15 yesterday, and now has to be re catheterised (poor fellow)

    They are worried that as he has pulled back around with the last hosp admissions they worry he will pull back around again. (thats hardly blinking likely) and wont be able to cope with him.

    They dont feel they can give him the care that he needs........ I am gutted as they are a good home..........

    By the sounds of it, they are indicating the hosp is at fault and not giving a consistent picture on my dad, and as they cannot get consistent information, they have refused.
  8. MollyD

    MollyD Registered User

    Mar 27, 2016
    Angie, can one person be designated to give the home an accurate picture, with medical notes?
  9. Toddleo

    Toddleo Registered User

    Oct 7, 2015
    Well Angie, the whole things sounds like a right load of b******s doesn't it. Just the kind of thing you dont want to happen, poor you, poor dad....

    I don't feel able to add anything much of assistance really. Apart from the fact that we have just gone through the fast track CHC funding for mum, and it was agreed withing a couple of days or thereabouts, the CHC team and Macmillan nurse sourced a place, and we did not need to be actively involved. Of course that's all well and good, but your case sounds so much "muckier" for want of a better word.

    I hope things resolve themselves soon without causing you too much more stress, and please keep us posted.

  10. Angie1996

    Angie1996 Registered User

    May 15, 2016
    There is someone, she said she has spoken to them again to try and alleviate any concerns. I am very angry, she said a previous nurse gave the home the wrong information.

    The care home have said that they have had so much conflicting advise from several people from the hosp they wont have him back.

    They dont think they can meet his needs now as they don't have enough staff to look after him and if he needs to see a nurse it can take up to 5 hours to get a response and they dont feel they can give him the support he needs.
  11. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    Angie, I don't have any brilliant advice for you, and I'm sorry to hear of this awfulness, which you really don't need right now. I can only imagine how angry and upset I'd be in your situation. I hope somehow it gets sorted.

    Sending all possible best wishes and a ((hug)) to you.
  12. la lucia

    la lucia Registered User

    Jul 3, 2011
    This is absolutely appalling. Angie I am so sorry that you are having to deal with this.

    Nothing useful to say except heartfelt hugs and best wishes x
  13. Angie1996

    Angie1996 Registered User

    May 15, 2016
    Thank you all so much for your support, it means a lot x the funding decision still not through.

    I spoke to dads allocated nurse, she said dad talks, but wont eat or drink and pushes their hands away when they try.

    He is completely immobile, does not move etc.

    No treatment being given at all now, however he is no pain.

    I am going to try and calm down now, gather my thoughts and am going down tomorrow to see him.

    Again thank you all so much. If anyone has any advise about what I do next re him being in hospital and now no home to go to, it would be appreciated. I am completely in limbo here :(
  14. MollyD

    MollyD Registered User

    Mar 27, 2016
    Angie, just sending you hugs. Try and get sone rest now till tomorrow (easy said I know). I feel for you so much.

    Biggest hug x
  15. canary

    canary Registered User

    Feb 25, 2014
    South coast
    Oh Angie, what a mess (((((((hugs)))))))

    Firstly, dont be pushed into doing something hasty - if hes a bed blocker, so be it.
    I would be inclined to go to the ward tomorrow at about 10.00am as this is generally when the doctors do their ward rounds. See if you can get to speak to his consultant and ask about how he is doing, what they think will happen and whether he is well enough to move.

    Once you know this speak to the hospital SW - they are supposed to talk to the patient/relative before discharge anyway (although this often doesnt happen), so it would be appropriate to ask her what options you have. A hospice might indeed be the answer, depending on what is available locally.
  16. Havemercy

    Havemercy Registered User

    Oct 8, 2012
    This must be so stressful for you. Sadly I don't think dad's care home are going to change their minds now - what a shame the ward messed things up. What I would be doing is asking if dad can be referred for Continuing Health Care under the Fast Track scheme - the medics and the nursing staff will be experienced in applying for this. Dad will need to be in the terminal phase of his illness (which sounds as if might be the case sadly) in order for funding to be granted. Then ( if funding granted) you will be able to plan for dad to be transferred to a Nursing Home for end of life care. Hopefully there will be someone working in the hospital who can guide you through this - although the Clinical Commissioning Group who grant the funding are helpful in my experience.

    In any event dad will be looked after where he is at the moment until suitable alternative can be found so don't worry on that score.

    Best wishes and hope things work out eventually.
  17. Louby65

    Louby65 Registered User

    Mar 26, 2014
    Hi Angie1996, I am embarrassed to say I work for the NHS , having read your post . I'm so very sorry that you have been worried about , what I can only describe as utter nonsense . Your father has a right to be cared for by the NHS so he goes nowhere until they can provide a suitable alternative . It should not be your responsibility to find a place that your dear dad can die with dignity and respect . Please ask the hospital to contact the palliative care team who will advise you what to do . As already mentioned by canary , a hospice may be the place for him . Under no circumstances move him anywhere until you are ' happy ' . Forget niceties or anything , you do not have to explain to anyone why you cannot take your dad out of hospital , it is their responsibility to ensure he receives the care that he so deserves . Also contact the social work department attached to the hospital and as also noted , please make an appointment with the consultant and senior charge nurse . I wish you and your dad my very best wishes and hope that things are resolved quickly to allow your dad and yourself to be allowed this time to be with each other , instead of fighting the bureaucratic NHS. Lou

    Sent from my iPhone using Talking Point
  18. Rodelinda

    Rodelinda Registered User

    Jun 15, 2015
    Angie - what a dreadful situtation and I really feel for you. I can't add much other than to say ask to talk to the palliative care team at the hospital or whoever deals with applications for fast track discharge. PALS should be able to advise you about this and help you make contact even if the ward won't. You shouldn't be left on your own to deal with this.

    My recent experience was that the hospital felt that fast track discharge was appropriate for my mother, the consultant talked to me, then the senior nurse who dealt with all applications sat down with me and went through the form. She told me that if granted, the NHS would find a suitable nursing home and would only transfer her if she was medically able to be transferred. It was suggested to me on a Thursday, the application went in on Friday and the decision was made on the Monday. Sadly my mother died that night but the speed and care was stunning. I might have been lucky but the NHS can deal with it quickly and compassionately.All the best for this - it's distressing enough facing the loss of your father and seeing him in his last days without having to cope with what sounds to be poor practice. Sue
  19. 70smand

    70smand Registered User

    Dec 4, 2011
    Angie, I've been so concerned about your situation and just seen this thread. Definitely take the advice given about the palliative care team- they should be able to advise you on what's best for dad, whether that's a hospice, an appropriate nursing home with palliative care or to stay put. Either way he must qualify for fastrack funding. By the way, I'm a palliative care nurse in a hospice as well as the daughter of a dad with Alzheimer's. Whatever happens stick to your guns Angie xxx
  20. LadyA

    LadyA Registered User

    Oct 19, 2009
    Nothing helpful to add Angie. But I'm so very sorry that you are being given this added stress, at a time when you should be being helped. xx

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