1. chip

    chip Registered User

    Jul 19, 2005
    400
    Scotland
    I don't no what is going on. Got a phone call today to say the consultant has said my husband has to go into a care home now. Hospital Social Worker phoned me to tell me he says my husband is borderline NHS continuing care because of his medical problems and he doesn't think a nursing home will take him as he isn't stable and because of his age. I am not even getting to see the nursing home he has in mind. But i checked it up on the net and found it takes over 65's and he is 11years younger. His advocacy says it isnt suitable for his needs as well so it loks like they will turn him down. An assesment is going to be done on him. I said well make sure its done right as no correct assesment has ever been done on him. It looks like i'm not allowed to have him home but no-one wants him .
     
  2. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Oh dear, chip, I do feel for you. I'm also facing having to let John go into care, and that's painful enough. But at least I don't have the added problem of age to contend with.

    If there isn't a suitable home in your area, they have to find one in another area, but that then gives you the problem of visiting.

    Let us know how you get on.

    Love,
     
  3. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    My dear chip, I have a friend in a similar position.

    Assessment ward need his bed. No local home prepared to take him, (no violence or aggression). Major problem being his age. 57.

    This lovely 18stone, gentle giant, is being pushed from pillar to post. She would have him home, albeit with a proper care package in place.

    I truely despair at the situation dementia suffers are in, particulary 'young onset'.

    Sorry that I cannot help, only commiserate. Stay strong, love
     
  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,583
    Kent
    Dear chip,

    I`ve sat here for five minutes trying to think of something encouraging to say to you. Your problems seem to be going from bad to worse.
    All you can do is fight your corner as well as you can and hope there`s someone out there with a heart, who sees your husband as a very sick man who deserves some consideration.

    Take care xx
     
  5. chip

    chip Registered User

    Jul 19, 2005
    400
    Scotland
    I have found out that progressive myoclonic epilepsy that he has the treatment is often successful for a few months or years. And he is still having myoclonics also a build up of myoclonics can cause epilepsy. So if he goes into a nursing home there is a high chance he would be in and out of hospital. Is this something to do with the 10 million NHS cut back? Its not our fault
     
  6. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Chip, we were talking about this at the course I was on on Monday. Alzheimer's is now regarded as a 'social' disease, so comes under SS funding. That's why the hospitals are so anxious to discharge patients with Alzheimer's once the physical illness is cured. The funding is then transferred back to SS, and the responsibility to either find a placement of set up a care package.

    That's why John's consultant was keen to discharge John before he had been in a week, to a respite bed. And why SS said no, because he was still being treated for the infection.

    I suppose that's why your husband is borderline -- his myoclonics are obviously dementia-related, so is it NHS or SS responsibility?

    John's UTI is strictly NHS, but now they say that's clear (I don't believe them), so he can be discharged.

    It all comes down to who pays, and it's a lousy system. And it doesn't help you at all.

    Love
     
  7. Grommit

    Grommit Registered User

    Apr 26, 2006
    2,127
    Doncaster
    Skye.

    When you say Alzheimers is regarded as a social disease does this mean that other mentally ill people are also similarly categorised. I.e shizophrenics, self harmers, and the like?
     
  8. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    My dear Lionel........completely bedridden, needing every aspect of care.....feeding, washing, dressing..lifting, turning etc...you name it, is regarded AS SOCIAL NEEDS.

    Therefore he is still paying for all his care. I feel it is a social disgrace. However I use what energy I have to assist him, too tired to fight social injustice.
     
  9. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,583
    Kent
    I can`t believe that Connie. What about his medication? What about his pressure sores?
     
  10. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    I know Sylvia.........but tired.....after years of looking after Lionel on my own, and then paying for specialised care for the last 10 months of his time at home.......my attitude became..........

    We will pay until the money runs out. On one aspect I am happy, as I would hate his children to inherit anything from the man they do not even recognise as their 'dad'. No contact, no birthday card, no nothing for the past year.

    Together Lionel & I chose the home he would spend the end of his days in....I say that advisedly..........only until the money runs out. Maybe then I will fight.

    Not sure, the last six years have drained my fight, my passion. Now all I want is for my dear, lovely man to be cared for as best we can provide.

    Sorry.......bit down today.
     
  11. elaineo2

    elaineo2 Registered User

    Jul 6, 2007
    945
    leigh lancashire
    Hi chip,just reading this thread makes me livid."borderline" is a word that to me means the S/W are at a a loss on the next step or move.In my opinion it is a phrase they use when they are reluctant to diagnose the level of care needed.If they can't take the word of the hospital and more importantly of family?well what next?I totally agree with posts that advise to fight your corner.If you don't,who will? I would hope that care and support is given from the right quarters when you make your stand.love elainex
     
  12. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Fraid so, Grommit. It's all part of the 'care in the community' guff, which is not for the benefit of the patient, but transfers responsibility from NHS to local councils.

    It doesn't work, as we know. When people are ill, they need medical care and supervision.

    Sorry, I'm getting political, and like Connie I'm not a political animal. I just think it's all wrong. We shouldn't need to fight.
     
  13. chip

    chip Registered User

    Jul 19, 2005
    400
    Scotland
    all my neighbours are saying its a disgrace. You pay into the NHS and they dont care. Why did they take him into hospital then? It was them who reduced his seizure meds without taking to me. So he took grand mal seizures and since then deteriorated. He has progressive myoclonic epilepsy as well which as the disorder progresses the medications become less effective they cant control the myoclonic's now so how long will the seizures be controled ? He is on two different seizure med at the moment one to control the grand mal seizures and that has been upped in srength and another one for the myoclonic's which is not controling them. Although he has Dementia, Progressive myoclonic epilepsy is - The outlook is generally unfavorable. Seizures are difficult to control, they often lose abilities involving thinking and movement. Muscle rigidity, unsteadiness and mental deterioration are often present. He has deteriorated a lot since he started this. The consultant is saying its a progression of the Dementia. Has he devoloped another medical condition and they are trying to palm it off as the Dementia?
     
  14. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    16,110
    Toronto, Canada
    Alzheimer's is a social disease? What idiot came up with that? Don't MRIs showing the brain damage demonstrate that this is indeed a physical disease, albeit with behavioural consequences? I spend a lot of time telling people that AD is a physical disease so I'm stunned and astonished to hear that it is considered a "social needs", whatever that is.

    Chip, I'm so sorry to hear of your distressing times. Can you get another consultant? Because, yes, I agree with you.

    Why did the hospital reduce the meds? There may be a good reason, however, they should certainly have spoken to you first. I know your energy must be completely exhausted but if you can put up a polite diplomatic fight, do so. Be smiling, be civil, be relentlessly in their faces.

    Take care,
     
  15. chip

    chip Registered User

    Jul 19, 2005
    400
    Scotland
    Found out that Social Services have been in touch with a care home. I phoned up the care home and got told a younger persons unit was being built at the moment. They also have no places for him. They are going to assess him but she says he might be too bad for them, and he will probibily be back and forth to hospital. She says if he is too bad she will back up NHS continuing care. The Social Worker did tell her that he is borderline. I have the continuing care guidlines that comes into effect on the 1st October. I have not been given an explination as to why he doesn't qualify. Also they have to be assesed every 3 months even in a nursing home for continuing care nothing has been said to me about that ether. I also haven't seen his assesment or no if it has been done. I also haven't even been to see this nursing home. Things are just not being done right.
     

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