1. tedsmum

    tedsmum Registered User

    Jun 28, 2006
    34
    Have not posted for a while but have been watching the boards most days. I thought everything was settling down but again I'm wrong. My dad is 86 and been happily in an assessment centre for 6 months, we knew this wasn't forever but he was moved very suddenly to a nursing home on the 27th December. We were caught unawares and the decision was made without us attending the meeting as both my husband and I were unable to get time off work at short notice. anyway after just one day I receieved a phone call to say he had refused to eat or drink and if this continued he would be hospitalised and he had collapsed clutching his chest but when an ambulance was called he quickly recovered. Today i received a phone call from NH to say he had been aggressive to both staff and patients, giving a carer a black eye and grabbing another by the wrists and marking her arm. This is from a very frail man who has never been violent in his life. They said they were refusing to care for him and he had been sent back to the assessment centre.The staff there could not believe this behaviour from such a gentle man and are launching an enquiry. I was just wondering what comes next. who will take him now and what sort of home should we hold out for as this move must be permanent as he has suffered enough and we want him to have the care he deserves.Also surely this means he is entitled to some nursing care allowance as previously SS said he has only social care needs. Can anyone out there please give us some advice?
     
  2. DeborahBlythe

    DeborahBlythe Registered User

    Dec 1, 2006
    9,222
    #2 DeborahBlythe, Dec 31, 2006
    Last edited: Dec 31, 2006
    Hello, what a nightmare for all concerned.

    Your dad is entitled to have his care needs assessed by the process of a Community Care Assessment and also an NHS Continuing Care assessment. At some stage, someone must have determined that he had nursing needs, hence the removal to a nursing home, but it is meant to be done, (any assessing), in close consultation with the relatives.

    In the areas where my relative lives, the main criterion for admission to a Nursing Home, is mobility. Does the patient need hoisting, use a wheelchair, require a high level of personal support? So you could have a person with quite challenging behaviour who nevertheless is deemed to be suitable for residential care rather than nursing, if they are able to walk more or less unassisted.

    There are supposed to be nationwide criteria being developed for deciding who is eligible to long term NHS funded continuing care. I do not know what stage this process has reached. The last I knew, the whole exercise was 'out for consultation'.

    To the best of my knowledge, health authorities are still deciding their own 'eligibility criteria' or rather, working towards a model that is the same across the country butpossibly with some local variations. My advice is that you should find out the name of your local Primary Care Trust (PCT): (it's just a fairly recent name for an old concept: a sort of health authority). When you have tracked down which is the responsible PCT for your dad, you should write to the Chief Executive, and ask urgently, for a copy of their local Continuing Care Eligibility Criteria which will set out how it is decided to award long term NHS funded care, and how it is decided that , if the fully funded care is not thought appropriate, the relevant 'banding' of NHS subsidy is decided.

    Check out the two factsheets below from the main AS website.

    http://www.alzheimers.org.uk/Caring..._and_nursing_care/info_nursingassessments.htm

    http://www.alzheimers.org.uk/After_diagnosis/Getting_support/info_communityassessment.htm

    Each decision can be questioned and appealed against but it helps if you know what rules are being used to determine the decision, hence the importance of seeing the Contiuing Care Eligibility Criteria. I know it's a bit of a mouthful, but never mind. It contains the rationale for any decision to award NHS nursing care and it will also tell you how to appeal and who the relevant decision makers are. In my mum's district there was a person called a ' Continuing Care Assessor Nurse' who seemed to wield a lot of clout. Ask if such a person exists in your relative's area and contact her or him urgently to ask what is going on.

    You need to ask some questions, as to how this transfer took place, and why you were not involved.

    Health care is supposed to be provided free, so in a residential home, if a resident has particular reasonably manageable health needs, the residential home will ask local NHS community services, such as District Nurses, OTs and physios to come in and give their services within the home on a 'visiting' basis. The point at which a residential home deems that it cannot meet all the needs of a resident even with NHS community services input is the point where they will start trying to move the resident on. What is needed is a system whereby elderly people can feel secure in a home which will meet all their needs for the rest of their life, and many homes are beginning to have two levels of care and two types of registration: residential and nursing to make any move less traumatic. If your dad is deemed suitable for a residential placement, then you have to be aware that it won't always be his final home. he may have to move on. I hope I'm not stating the b. obvious here; I'm just trying to think through the different strands of your dilemma.

    The important thing is that your dad gets the right type of care first so that is why it's important that the proper assessments take place and that you find a way to be present to influence the process. Argue about the funding later, has been my motto. The assessment process should determine whether your dad is OK for a residential home or a nursing home and whether or not that home is a general care home/nursing home, or an EMI version.

    Have you been able to look at any care/nursing home local to your dad? Has anyone given you a list to think about? They usually do this at the end of an assessment, after it has been decided what sort of home the person is deemed suitable for.

    Good luck
     
  3. blue sea

    blue sea Registered User

    Aug 24, 2005
    270
    England
    #3 blue sea, Dec 31, 2006
    Last edited: Dec 31, 2006
    Above advice all excellent so just adding some support from my own experience.

    My dad, who has sadly since died, went through a very similar experience as the vascular dementia worsened, changing from a very quiet, gentle man to one who lashed out at staff and residents. In the end the care home couldn't cope and he was sectioned. This sounds terrible and I was really upset but in fact it triggered a much higher and more appropriate level of care, and as he moved to the longer term section 2 category, free after care for all costs. In the end he had a major stroke before he could be moved to a small, very good, unit for elderly people with challenging dementia , and died in hospital. However my main point is that the key is getting the right level of support from a psychiatirc consultant. There are very few facilities available for elderly people with dementia which is at a stage that puts them and others at risk, but they do exist and they can be excellent.

    I know from my own experience what a hugely emotional time this is for you. I would give this advice which I hope helps:
    1. Remember always that it is the illness causing the problems, not your dad. Don't feel you have to apologize for what he does when he becomes aggressive - it is not your fault or his.
    2. At this stage the illness is very very unstable; just a small change of medication can cause a huge, even if short term, improvement. There is an element of trial and error with the medication but it can make a real difference, calming down the aggression. A chang to a smaller environment with a higher level of staff to patient care can also make a great difference.
    3. I found the community psychiatric nurse an excellent practical and emotional support - ask for a referrral to one if you haven't already got one.
    4. Look after yourself - your own health and well being. You need your strength.
    5. Do all the information seeking and research but don't worry too far ahead. it is totally unpredictable how this illness progresses with each individual so it is better to take things one stage at a time.
    6. Write down questions you need to ask and insist on an appointment to meet the doctor/ consultant and social worker responsible for your dad's welfare. Don't let them rush you. Explore all possibilities then you know any decisions is based on the best available option.
    7. As well as this forum I found the Alzheimer's phone help line really good - for practical, financial advice and (once!) listening to me have a good cry!

    I wish you all the best as you cope with this difficult stage. You dad would be proud of you. If you would like any further support I'm happy to respond to a private message.

    Blue sea
     
  4. Kayla

    Kayla Registered User

    May 14, 2006
    621
    Kent
    I think the idea of Residential Homes offering two levels of care, so that people don't have to be moved on when they become more ill and less mobile is good. My Mum was very settled and happy in her Care Home and was very upset when she had to move into a Nursing Home, after breaking her hip. If she could have stayed where she felt safe, I think she'd have responded more quickly to treatment and would have settled down better after her traumatic stay in hospital.
    I would also like to see more variety in provision, with sheltered housing and assisted living apartments available for people who are still able to do some things for themselves, but are not safe to be actually living alone. In our area, sheltered housing is only available for those on low incomes, not house owners, so many in social need either struggle on in their own house, or have to go into a Care Home.
    I've heard of schemes in America, where a group of disabled or elderly people live in a shared house and support services come in to help them live as independently as possible. They can help each other and keep each other company and yet have their own en-suite rooms for privacy. This scheme would bridge the gap between independent living and moving into a Care Home and would probably also be cheaper and more cost effective. The support staff don't have to travel so much to their clients.
    My Mum is doing well in the NH, but I feel that she could have more social stimulation and activities to do, as there were in her Care Home. Medical care is excellent, but as she has been there a year now, I'd love to see a more holistic approach. Mum can't walk so she has to stay in her room all the time, which must get boring for her although she does have a good friend to keep her company.
    Kayla
     
  5. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,438
  6. tedsmum

    tedsmum Registered User

    Jun 28, 2006
    34
    Thanks to you all for your help. A meeting has been arranged for 10th January where we will voice our concerns and take it from there. Thanks again for taking the trouble to reply it's nice to know I'm not on my own.
     
  7. tedsmum

    tedsmum Registered User

    Jun 28, 2006
    34
    Just a footnote blue sea I have sent you a personal message.
     

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