Advice needed for meeting with psyc tomorrow

Discussion in 'ARCHIVE FORUM: Support discussions' started by Catey, Jun 14, 2007.

  1. Catey

    Catey Registered User

    Jun 14, 2007
    9
    South Bucks
    Hi everyone, I have previously posted under the name of a_daughter but am having trouble in logging in, so have re-registered.

    To recap, my mum went into residential care last October wth vascular dementia described as the moderate stage.

    She has never settled at the home. Grizzles a lot, get very anxious and of course has got more and more confused. She sees the local GP for physical ailments and has a CPN and Pysc Consultant for the dementia.

    This week has been particularly fraught, as mum believes that someone has taken her children away. We can't make much sense of who it is but it would appear to be my dad, who died 17 years ago. It could be that she is remembering something from 50 years ago, which we don't know about. This has caused her to become very distressed and angry with whoever this person is (although she sometimes calls them a 'she') and is threatening what she will do when they come back! She is constantly trying to get out of the home; banging on doors etc and getting very angry. She has previously struck one member of staff with her walking stick.

    I had a call from the manager yesterday to so that she had decided that they could no longer give mum the appropriate care. She said she needed "specialist dementia care". I said that I could not consider moving her at present without knowing what the problem was. When we picked the home, one of the reasons was because the manager (different one) said that she would always be able to live there, even as her dementia progressed and that she would stay in the same room (private) and not be moved to the EMI unit (seems to be all LA funded).

    I really do feel that, since my mum has been at the home, the local GP and Psyc service have done very little in helping her. She has had three Consultant Psycs in the last 9 months (new one tomorrow) but they only change her tablets in order to try something else to alleviate the anxiety. Of course, each change needs a couple of months to see if anything helps and so we go on.

    She is in constant pain from arthritis in her back and although she has pain killing tablets, still screams in pain and has now begun walking with a sort of crooked stoop. The GP says she just has to try to think of something else! He is of the opinion that there isn't the amount of pain that she is complaining of and it is, in fact, the dementia giving the wrong signals.

    Tomorrow we have a meeting with the new Consultant Psychiatrist and I feel I really do need to "kick ass". I have been requesting that mum goes into hospital for an "assessment" (although I don't really know what this entails it seems to be the thing to do to sort out medication) since this all started over a year ago. Each time I have asked this I have been met with such comments as "Oh, I suppose we could section her" (social worker), or "Oh, you don't want her to go into a place like that" (Con. Psyc).

    To be honest, I don't have a problem with mum being sectioned. I am quite au fait with the mental health act in that respect, and she wouldn't know if she was in "a place like that" anyway. I took both of them to be meant to be frighteners. You know, like, fancy having your mum sectioned!

    Tell me what to do? What can I insist on. I cannot bear to see my mum suffering like this much longer. It's affecting the whole family and we are all falling apart.

    Finally, what is "specialist dementia care" and how do we access it.

    Thanks
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,586
    Kent
    I`m really sorry Catey I can`t be of much help, and I do hope someone else will be able to answer your questions.
    All the terminology and jargon is very confusing, on top of the differing standards of available placements.
    If I were to attend the meeting I would request care that would keep my mother as contented as possible with the minimum of intervention, and put the ball in the court of the professionals to reassure you of their quality of care.
     
  3. noelphobic

    noelphobic Registered User

    Feb 24, 2006
    3,452
    Liverpool
    This must be so distressing for you and I do sympathise. However, I would be reluctant to have her admitted to hospital unless it was unavoidable and/or you truly believe the benefits will ouweigh the disadvantages. Dementia patients adapt to change badly in general and another move is likely to make her worse than she already is.

    My understanding of 'specialist dementia care' would be that this would be an EMI unit or care home. Is it not possible for her to go into the EMI unit of her existing home or are you dead set against this idea?
     
  4. Catey

    Catey Registered User

    Jun 14, 2007
    9
    South Bucks
    Hi Brenda,

    No I don't have a problem with her going in the EMI unit. I fact I know she wanders in there in the day anyway.

    At this home (Freemantle), the EMI unit seems to be used by the local authority and mum is a private resident. I think she would have to be referred there by the local authority. This is further complicated because Mum comes from out of the area (we moved her nearer to myself and my sister).

    That's useful to know what the 'Specialist dementia care' is though. I assume it means that the local authority have to be agreeable to picking up the tab.
     
  5. DeborahBlythe

    DeborahBlythe Registered User

    Dec 1, 2006
    9,222
    #5 DeborahBlythe, Jun 14, 2007
    Last edited: Jun 14, 2007
    I'm a bit surprised that a manager would have said this to you, because whether or not your mum is self-funded, care homes have to have the appropriate registration for the category of care they provide, and the manager wouldn't have known what might happen to your mum, ( who would?) in terms of progression with the disease.

    However, s/he may have been implying that the home would be willing in the future to apply for a variation in registration specifically to allow them to continue to care for your mum, which sometimes happens. ( It does cost tham money, however, and also they have to improve the training. Some relatives offer to pay for this, to keep their loved ones in the same environment.)

    If you read the CSCI inspection reports you will see each home is registered to care for X numbers of Y types of residents/patients and some homes mainly cater for one type but have a few exceptions. Those exceptions are probably where a few residents' needs have changed and the home has then sought to get its registration status changed with CSCI. The home would have to be able to show that they can provide specialist care to a certain level, if they wanted to alter their registration.

    It may be that the home has got a particularly rigid CSCI inspector/office, or it may be that other residents have complained, making it difficult for the management to stick to their original statement, or they may simply have realised that even if they applied for a variation in registration, they wouldn't get it because they cannot show that they have enough appropriately trained staff, trained in dementia care.

    Unless you know for sure what the local assessment unit in the hospital looks and feels like, and are sure that it is a good place to go, I would agree with Brenda that hospitals are best avoided unless absolutely necessary. I would also echo her query as to why your mum could not go to the EMI wing of the home. However, I know that there is high demand for EMI residential and nursing places and that LA's often 'block book' all the available places for their own LA clients: an ironic twist for anyone who thinks that having funds to buy your own care is necessarily easier than if you have to rely on state subsidy.

    Your mum needs to have a proper assessment of her needs and this is supposed to be undertaken by the LA even if the person is self funding . ( Everyone has a right to an assessment regardless of their financial status). When you meet the psychiatrist tomorrow, you could say that you would like a full a ssessment of your mum's care needs to be undertaken and if the psychiatrist wants to intitiate this process, then well and good but it would need a multidisciplinary approach to ensure that your mum's social and physical needs are also addressed.) Do you have any contact with the LA? If not, I would try and get in touch with their SW department, or ask the GP to kick this off. For self-funders, once the professionals have determined what type of care she needs, the business of finding a care home is usually left up to the relatives, next of kin, EPAs. There are lots of fact sheets about choosing care homes, and about continuing care assessments/ assessemnts for NHS funding on the AS site. The CSCI website will tell you which homes are around in your area and how they performed in recent visits. www.csci.gov.uk


    With a diagnosis of dementia, it is almost inevitable that your mum will be deemed to need care from a home registered to cope with dementia, i.e EMI registration, especially if she has challenging behaviour. However, if she needs nursing rather than residential care, there is some room at the edges for flexibility if her physical and nursing needs outweigh her mental health/dementia needs and she has no or little challenging behaviour.

    Hope this isn't too confusing; don't forget to ring the AS helpline also for their advice. Good luck.
     
  6. DeborahBlythe

    DeborahBlythe Registered User

    Dec 1, 2006
    9,222
    #6 DeborahBlythe, Jun 14, 2007
    Last edited: Jun 14, 2007
    They wouldn't pick up the tab unless your mum had on- or- below the permitted level for savings. Otherwise she would be expected to spend all her own money on the care, until her savings ran down to the permitted level and unless she qualified for an element of or total nursing care. They might quibble about the area from which your mum originally came, but that is an argument that you can challenge them on later if it arises. Best not to mention it!
    It isn't about whether they will pick up the tab necessarily. She could possibly still access a place there if the home owners have a spare one. It seems likely though that the LA has bought the lot. I think however that most care homes do reserve a place or two for use by self funders. It's in their financial interest to do so as they usually charge the self funder more than they charge the LA. In your shoes I would want to speak to the care home manager and go over again whether it is possible for your mum to stay where she is if they were to apply for a variation in registration. And then move on to the posisbility of a room becoming free in the dementia unit. At the end of the day, however, you may want to find an EMI residential home which ALSO has a nursing care facility , in order to avoid yet another move further on down the line.
     
  7. Cate

    Cate Registered User

    Jul 2, 2006
    1,370
    Newport, Gwent
    We specifically chose this particular NH, not only is it fantastically run, but because it has residential, nursing and EMI, what you might call hedging our bets!! The last thing we wanted was to put mum/us through the trauma of another move down the line.

    We also moved mum from her own LA area to mine so that she would be near me.

    She is also self funding, no savings to speak of, but we are in the process of selling her home to pay for her care.

    Whilst her Social Worker is not the sharpest knife in the box, he is very kindly and seems to know his stuff. He has told us that they will remain responsible for her even though she is now ‘out of area’. Currently they are funding her NH fees, which of course we will be required to pay back once her home is sold. Also when the money from the sale runs out, they will resume paying for her, taking into consideration all mums benefits and State Pension, I believe leaving her with about £17:00 a week for ‘expenses’, (lets hope she doesn’t need new shoes or a coat!!). Her ‘medical’ care has however transferred to the local heath authority.

    We have been assured by the NH that they would be happy to transfer mum to the EMI wing should this become necessary, it doesnt seem to matter to them where the funding is coming from. However, we are fortunate, its the same staff who rotate between the EMI wing, and the residential wing, so they are all very well trained in looking after residents with dementia. They have told us that they do their very best to keep mum on the residential wing where she has now settled, unless of course her behaviour deteriorates to the degree that she upsets the other residents.

    As previously suggested, I would have another conversation with the NH Manager about transferring mum to the EMI wing which would be better for your mum. I would also avoid mum going into hospital for assessment, this might just cause your mum a lot more confusion, and I honestly dont see what they could do in addition to your mum being assessed and treated where she is.

    Best wishes
    Cate
     
  8. Catey

    Catey Registered User

    Jun 14, 2007
    9
    South Bucks
    Thanks for all your replies.

    I have spoken to the home manager and she advised that her needs are too high even for the EMI unit !

    Apparently "specialist dementia care" is a specific level of care and she gave me the name of one home that she knows of that provides it. It is 35 miles away.

    They are currently undergoing an inspection. I wonder if this has what has bought this about.

    My approach tomorrow will be that no one can say what care my mum needs until she has had a proper assessment of her needs and medication. I don't see that I can find another home for her without it. I don't think it is down to one home manager, who has only been in post three months, to give her assessment alone.

    I am in danger of losing my temper tomorrow. My mum has been badly neglected by the medical and mental health professions and I am going to tell them so.
     
  9. Catey

    Catey Registered User

    Jun 14, 2007
    9
    South Bucks
    By the way Deborah .....

    We were assured that the home had the appropriate registration for Mum to stay in her private room, outside the EMI unit, for as long as needed. The only exception would be if she needed Nursing Care for her physical needs.
     
  10. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,439
    Well try not to lose your temper but I think you're right: only after a proper assessment can a decision be made about the level of care your mother needs. One thing that I did think was a little odd in your first post: what sort of EMI facility allows easy access from the outside? You did say your mother goes in there frequently? Or am I misunderstanding something? My point being it doesn't really sound like a "proper" EMI facility.

    Incidentally, I think the issue of which LA has responsibility for her is a red herring. In the event that the LA or posssibly the NHS trust ended up paying for her, it would be whoever was responsible for the catchment area where she currently resides, assuming she's registered with a GP etc.

    Jennifer
     
  11. DeborahBlythe

    DeborahBlythe Registered User

    Dec 1, 2006
    9,222
    #11 DeborahBlythe, Jun 14, 2007
    Last edited: Jun 14, 2007
    Hello Catey, it does seem a bit of a rum do. Perhaps what they are saying ( admitting) is that their EMI unit is not up to speed. I still don't understand why they couldn't take her, asuming that her needs are still for residential as opposed to nursing care. Perhaps, as you say, they are aware that they must play very safe with the inspectors hovering around.
    And the original assurance was certainly unwise and misleading. Did you get it in writing?
     
  12. DeborahBlythe

    DeborahBlythe Registered User

    Dec 1, 2006
    9,222
    That may well be so, Jennifer, but you'd be surprised how much Local Authorities either 'try it on' or simply don't know the rules. It' so much easier if an elderly person is someone else's responsibility.
     
  13. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,439
    Oh yes, I know exactly what you mean. You just have to stonewall: she's living here, she's your responsibility etc. and keep repeating it.
     
  14. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #14 Margarita, Jun 14, 2007
    Last edited: Jun 14, 2007
    You can tell them that without losing your temper

    also when you said

    and the doctor says
    Now that is just so generalizing all people with dementia , he should send her for an X ray .

    Honestly a walking stick , what elderly person does not do that even if they do not have AZ .

    If they did section your mother , even thought you did not want her to be section . then you tell them that your not paying for it the LA can do it , turn it around on to them it you felt that they are

    play them at they own game

    Tell her you want it all written on paper why she has come up with that conclusion & give it to the Consultant Psychiatrist

    see what he thinks when he see your mother tomorrow .

    yes try to not lose your temper , but tell them what you think :) Good luck
     
  15. Catey

    Catey Registered User

    Jun 14, 2007
    9
    South Bucks
    Update

    Well, I don't quite know how to tell you all this. Reflection is a wonderful thing and when I posted the first post in this thread I was really in dispair. However, I now have a completely different view on things. This afternoon, at the meeting with the psyc, I was complete together and assertive (no, I didn't lose my temper) and I think we have a result, of sorts.

    What I didn't tell you is that I share the 'care' of mum with my sister but as she was on holiday, I was carrying the burden of what the home had said as I didn't want to bother her (she is ill herself) but once we could talk I was able to see things in perspective.

    As Sis pointed out, since mum's medication was changed about six weeks ago she has, in fact, improved. When we take her out on her usual outings and bring her to one of our houses on a Sunday, we are actually able to have a conversation with her. My sister pointed out that the problems we are having are only with the home and that she will not settle there and keeps trying to get out - plus the confusion and delusions of course, but we don't actually get these to any great degree, any more, when we are with her.

    So, the problem seems to be actually in the home.

    We were waiting for the psyc this afternoon, in her room. The doctor and the manager having a meeting prior to seeing mum in the managers office. I knew that the manager was getting her point across that mum should go into hospital for assessment (I know I previously agreed with this!) and I was prepared for this when they came in to see mum.

    They first thing the psyc said to my Mum was "how do you feel about moving". At this my Sis had to leave the room as she was so upset as she saw it as a compete set up by the manger to get her into hospital and then not let her back.

    I, in the meantime, pointed out the improvement in mum and the fact that the home wasn't meeting her needs because she was so lonely the bored all the time and this was causing her to become so anxious. The psyc agreed that it was not due to a worsening of her dementia and that he found her conversation was good and her behaviour appropriate and agreed with me that this was the problem.

    Mum, I have to say was a star, perfectly reasonable - confused of course - but was able to make sense and took great pleasure in showing the doc her 'boys' (great grandchildren) and her 'bowling album'.

    To try to resolve matters, I have taken on responsibility for making sure that Mum is appropriately occupied in order to avoid the anxiety attacks. We are going to try to employ someone who will take her to various social events a couple of times a week and try to get her to take part in the various in house 'activities', although these are not particularly well arranged and are run by normal staff who have the responsibility for medication, food, care, etc. We have also tried to get though to her that the incessent crying and trying to get out is not helping anyone, least of all her, and that she needs to learn to take time out because there is always something going to happen on the horizon. She seemed to take it on board.

    Of course, I don't really see that this is my responsibility, especially as we chose a home which had 'activities'. But this is making the best of a difficult situation and we will probably move her as soon as we find a home that does fulfill her needs. However, as the psyc said, she doesn't need "specialist dementia care".

    Well, that's a bit of a turn round from my original post but doesn't dementia just get you like this - even if you are not the sufferer.

    Thanks for all your kind words and advice.
     
  16. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    Well its good that you have your sister support and the advice of the psyc so you can see things from outside the Box so to speak .

    but oh yes no the feeling
    Don't be so hard on yourself your doing a great job , in finding the right care home for your mother & seeing to her needs xxx
     
  17. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,586
    Kent
    I think everyone can learn from the above.

    When I was in hospital, having been on traction for a trapped nerve and slipped disc, as I was recovering, and getting about the ward, the Consultant said, `I believe you are very anxious to go home.`

    I hadn`t given any indication of that to anyone. Where had it come from? It could only have been that the bed was needed.

    But if I had gone home too early, and suffered a relapse, the hospital would have been able to cover itself by saying I was `anxious to go home`.

    I told the consultant, I was only anxious to go home if he considered I was fit enough.

    He kept me in a further 5 days.
     
  18. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    639
    West Sussex
    Yes, Catey, that's very true.

    Mum lives very much "in the moment." while we are often at our wits end with worry and concerns over matters concerning her, she is, thankfully, oblivious to it all.

    As the psychiatrist has said your Mum doesn't need specialist dementia care that overules anything the care home manager might say.

    Well done, you have managed to find a middle road until you find a home that will be better for your Mum.

    Kathleen
     
  19. Catey

    Catey Registered User

    Jun 14, 2007
    9
    South Bucks
    Searching for a new home

    Well, have been out today looking for a new home for mum.

    I called in to see her at the home this morning and it was obvious to me that the home is not meeting her needs. Actually, I don't think they are meeting the needs of many of their residents. It's amazing how these glossy brochures that promise this and that make you believe that you have solved your problem, but in reality, once you have accepted them, they don't come up to scratch.

    The activity today was 'discussion group'. Only 3 of the 10 residents in her house took part (you would think that would tell them they had got it wrong). I took mum along and sat with her, only to find that she was competely ignored. Didn't even acknowledge that she had entered the room. On the other hand, another resident entered about 15 minutes after us and was greeted with "hello Betty, come and join us". Do you think that staff have been told to make mum feel unwelcome?

    Anyway we went to look at two other homes. One, a BUPA, was incredible beyond belief. Dirty, unstimulating, the residents unkempt and the whole place smelt of Lilly of the Valley mixed with pee. It was heartbreaking, and at £800 a week - shameful. Horrible rooms, no carpets, no table linen. I think a workhouse was probably more agreeable.

    Secondly we went to a Barcester Home. Glossy beyond belief - at £1250 per week. Beautifully staged - even to the extent of leaving an unoccupied room's door open so that we could glimps the beautifully co-ordinated bed linen and curtains. Then there was the waitress service in the restaurant which we started our tour on, and strangely, finished our tour on. By then we had forgotton that the restaurant was not accessible to dementia patients, their dining room was much pokier and duller.

    We are really at our wits end to know what to do with mum. Yes, she is in the moderate stage of dementia. That doesn't mean though that she should be left on her own doing nothing all day. She still remembers, like yesterday, that she travelled, played bowls, whilst, bridge and did the daily crossword. Although she is not fully capable of doing any of these things any more, she does not want to spend her day sitting looking at four walls.

    There seems to be a gap in dementia care for those who are at her stage. That with some stimulation, could hold on a little longer to what faculties they have.

    I really don't know which was to turn at the moment. Any suggestions gratefully received.
     
  20. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,586
    Kent
    Dear Catey, my only suggestion is that all homes should be run as a service and not as businesses.

    Of course this is a political issue, but it`s a moral issue too, and no government has ever had the courage or the integrity to accept the care of dementia as part of the NHS.

    I remember looking at homes for my mother and they were demoralizing. We did find a brilliant home eventually, it did just what it said on the cover, but it took so long to find.

    Keep searching Catey, you will find one. There are many on the forum who have nothing but praise for the homes they found.

    Love xx
     

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