What to do for the best?

Discussion in 'ARCHIVE FORUM: Support discussions' started by emscub, Jul 11, 2005.

  1. emscub

    emscub Registered User

    Dec 5, 2003
    #1 emscub, Jul 11, 2005
    Last edited: Jul 11, 2005
    Not sure where to start really, as things feel really out of control at the moment. Not only with my Nan but with the way in which she is being looked after in the hospital.

    I posted a few weeks ago to say my Nan was admitted to hospital with MRSA and she is still there (6 weeks later), in the same tiny room, and so agitated it is impossible to speak to her any longer. She just keeps going round and round asking the same questions about what's happening and whether she'll be alright and nothing, absolutely nothing, we say seems to calm her. We've tried everything we can think of from speaking calmly and giving her repeated answers to distraction and shouting (in the hope that she will pick up on the tone that she is behaving unacceptably) as she has reacted to this in the past, but nothing seems to work. When we visit we all leave feeling completely exhausted and so stressed it seems a waste of time visiting at all, as it certainly doesn't appear to help my Nan in any way.

    We all keep going from knowing that no-one can cope with her in this state (the hospital staff just ignore her) and feeling terrible and very guilty that we should be able to do more.

    She was NOT like this when she was at home before she went in to hospital and I just can't understand why they are not sedating her a little. We were told by an agency nurse that she had never seen anybody on the sedative they are putting her on at night (she mentioned something about it being used on horses as it's so strong) so we've taken to presuming that they cannot give her anything else during the day.

    She had a fall a few weeks ago and we arrived to find her nightdress on the floor (where it had been for a number of hours) absolutely covered in urine, and we are now being given bags of her dirty clothes absolutely covered in urine and excrement, where things have just been rolled up and thrown in a carrier bag.

    My Mum visits every day and collects dirty laundry, however it seems that every few days she is absolutely piled with clothing and my Nan has nothing left in her drawers (some of it clean).

    We also witnessed a nursing auxilliary walking her round the ward the other daym and when we asked if she was meant to be out of her room (due to the MRSA) we were told that my Nan comes out of her room herself anyway! So this makes it alright for the staff at the hospital to expose other patients to infection?!

    The hospital has told us that they think my Nan should be placed in a home (of which there aren't many catering for dementia and nursing needs), and up until now we have been fighting for her to come home, but we know this is not possible now. The way she is at the moment, no-one would be able to care for her without heavy sedation, let alone my parents who both work full-time, so my Mum has phoned the social worker and asked her to look for a place at a home in the area and has spent the whole morning crying.

    Sorry to have gone on so long, but it really does feel as though we had the whole situation under control until she had to go into hospital, and we still don't even know whether a bit of sedation could improve my Nan's mental state enough for us to have her home.

    I can't bear seeing her in that state in that tiny room in hospital any longer.
  2. Rosalind

    Rosalind Registered User

    Jul 2, 2005
    Have you considered going to the local press? It sounds as if the hospital are not exactly doing its best, and exposure in the Chronicle could bring about some results. MRSA is a hot topic at the moment.
  3. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Hi Emma

    I'm so sorry to hear about this.

    It does seem a common situation that hospitals mismanage dementia patients because they reall don't have a clue how to cope with them.

    That's how I lost Jan to her care home - a specialist dementia assessment unit [!] allowed her to fall and damage herself, and she was never able to come home again.

    It's not limited to dementia patients either!

    A couple of weeks ago, Nina's Mum went in for a cataract operation, a one day job. They assigned two students to the job, and they not only hurt her while doing so, they also took nearly an hour to do the one eye, and she has now been left with an eye infection for which she will need to use drops for the rest of her days. She heard one of the students as the other during the op. - "what do you think we should do next?"... not exactly encouraging of confidence.

    Ah, but of course the patient was 84 and so it didn't really matter, did it?

    The Surrey hospital concerned is renowned for its bad MRSA record, but what other option is there?

    There is good practice of course. My 80 year old Dad lives in Cornwall and for his cataract op recently he was offered a 9 month wait to have it done in the hospital - or next week in the car park! He took the car park. It was a theatre lorry staffed by South African medics who did the job in 20 minutes, perfectly.

    Post code lottery again!

    There ARE good care homes out there, so my best wishes for your search.
  4. chrissieL

    chrissieL Registered User

    Jun 22, 2005
    Hi Emma,
    I have to agree with Brucie, hospitals really do not know how to cope with people with dementia.
    Here's my experience...
    My husband was admitted to hospital with urinary tract infection and while in there they found he had very high blood pressure, poor blood flow from the heart, a shrivelled kidney and had several mini strokes, hence the dementia, I'm sure they tried their best but his experience sounds a lot like your Nans (terrible delusions and hallucinations) and he was in a very bad way. I also had the bags full of wet and soiled clothing left for me and he stank most of the time. I also was told by staff he should be in a nursing home which I was about to do. The only reason I didn't was because an over zealous O.T. rushed him through a home visit ( to free up the bed I presume) and passed him, so I didn't have time. I also had a problem with sending him to daycare, that caused distress too.To cut a very long story short he has been home for 5 weeks now and is clean and happy, no distress no confusion.
    This is my experience only and it may not work for your Nan, I'm not an expert and can only talk for me and my husband. I'm giving you this story because you say your Nan was O.K. before the stay in hospital, but please don't let me give you false hope it may not be right for her.
    Good luck with your problems and maybe a good nursing home will work wonders for her. I'm sure people on here will give you good advice.
  5. emscub

    emscub Registered User

    Dec 5, 2003

    Thanks for your reply. Sounds as though you've been through it too. I would be interested to hear how your husband was (in terms of his dementia) while in hospital, as you say he is much better now.

    The big problem is that both my parents work full-time and I will be out full-time from October and they're saying my Nan needs 24 hour care, which clearly we cannot provide, although I cannot really see any great difference in her personal care needs now compared to before she was admitted and obviously we cannot be sure that she will be as agitated if she comes home and goes back on the sedatives she was taking beforehand.

    Although, saying all this, we were really struggling to cope before she went into hospital, and obviously it would be quite a big risk to take bringing her home if we really cannot cope and she continues to behave the way she has been in the hospital.

    I feel so angry that we have almost been forced into the position where we have to make this decision, rather than truly coming to the point where we know we can no longer care for her at home.
  6. Lynne

    Lynne Registered User

    Jun 3, 2005
    Have you (or your parents) approached her GP?

    Perhaps you could get some back-up from him/her, if they become aware of the situation?

    I'm sorry I can't offer something better, but it just struck me that the GP wasn't mentioned in the board correspondence (you may have already tried it of course)

    The involvement of the local press, or heavy hints about it to a hospital manager, sounds like a good idea, but do remember that the press can be very fickle, and tenacious! You might have a tiger by the tail.

    Best wishes
  7. daughter

    daughter Registered User

    Mar 16, 2005
    Hi Emma,

    It seems some of you and your parents problems would be eased if the hospital sorted your Nan's laundry. Does anyone know if it is usual for hospitals to farm out the laundry to relatives? What happens if there are no relatives?

    I understand your anger because my first post on TP was regarding my Dad's stay in hospital and I know how the upset and frustration of him being in there was unnecessarily increased because of problems with clothing. He hardly ever had any of his own clothes on when we visited and I couldn't count how many times we were told: "they're at the laundry". When Dad came out, I sent a letter of complaint but who knows if it did any good?

    If you want to see more;



    I'm afraid they won't help, other than to let you know you're not alone. I do agree with Bruce that there are good care homes out there. If you concentrate on trying to find your Nan a good one, hopefully the hospital nightmare will end soon.

    Best wishes,
  8. chrissieL

    chrissieL Registered User

    Jun 22, 2005
    Hi Emma,
    Yes it's different for me, I'm at home all the time and could afford to take the risk, our G.P. said I had nothing to lose as I could always place him in a home later if needs be.
    My husband has had signs of dementia for several years i.e, memory loss and disorientation in strange places, he also was very reluctant to go anywhere without me and in the end refused to go completely unless I went too. At the time I did not fully understand what was happening, but the family began noticing it too, so I knew it wasn't all in my mind. Shortly before he was admitted into hospital we went to visit our son and stayed in a small hotel, he began to get panicky and confused, he couldn't remember where we were or why we were there. I decided that on our return we would definately visit the doctor. I didn't have time to arrange it as he came down with the urinary infection and was shortly admitted to hospital. He was disorientated at home before he was admitted and didn't recognise his own room and didn't know where he was.
    On going into hospital he was hallucinating badly and suffereing from dillusions, basically talking rubbish and wandering. Of course this could have all been caused by the infection, but I didn't know that then.
    The longer he stayed in hospital the worse he got, he didn't remember any of us visiting and had trouble recognising his children and grandchildren, He was constantly asking for me and saying he was frightened.
    I still do not know how much of this was due to the infection and how much to being in a strange place without me, I only know that he is much better now he is home, almost his old self.
    He had a scan while in the hospital and was diagnosed with vascular dementia, he had signs of multi infarct due to several mini strokes. He still has very poor short term memory and can only keep things in his head for minutes, but other than that he is happy and well.
    I hope this answers your question as to how his dementia was in hospital,
    it sounds as though your Nan might be a little worse than my husband, He is nearly 82 by the way, I am 55 so am able to care for him at home, for now anyway!
  9. Sheila

    Sheila Registered User

    Oct 23, 2003
    West Sussex
    Dear Emma, we had much the same with my Mum too. I can really only echo the others and to say contact PALS, the patient liason service. They should have leaflets and notices in the hospital foyer, but if not, log in to their website, just PALS.UK should find it, if not I have a local number I can ring to get the number for your area if you PM me. Thinking of you, big hug, love She. XX
  10. Jude

    Jude Registered User

    Dear Emma,

    So sorry that things are going so badly right now. The whole situation sounds totally unacceptable. I can really understand how much stress you are going through with Nan suffering like this.

    It's time to start jumping up and down and shouting! Get on to the GP, the Consultant Psych, PALS, your local MP - and then the media if you don't get a rapid result.

    Thinking of you.

  11. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
    Dear Emma
    I think I have suggested this before,contact whoever is charge of your Dad's care and demand a meeting to discuss the situation.
    If that fails contact PALS as Sheila sugests,this is the follow on from the old community Health Council,and will investigate for you .
  12. Sandy

    Sandy Registered User

    Mar 23, 2005
    Dear Emma,

    This must be an incredibly frustrating and distressing situation for you and your family. The decision about whether or not to try and bring your Nan home or to find her an EMI nursing home is a very difficult one, especially when there are a number of unkowns (Will she settle down more at home? Can reliable 24 hour care be arranged? etc.). You said:

    Although, saying all this, we were really struggling to cope before she went into hospital, and obviously it would be quite a big risk to take bringing her home if we really cannot cope and she continues to behave the way she has been in the hospital.

    I feel so angry that we have almost been forced into the position where we have to make this decision, rather than truly coming to the point where we know we can no longer care for her at home

    I can only echo what some others have said in that there are some very good care homes out there that offer EMI nursing. Your Nan sounds as if she might have complex health care needs (insulin-dependent diabetic, vascular dementia, MRSA) so her placement might be fully funded under the heading of NHS Contuning Care ( fact sheet: http://www.alzheimers.org.uk/Caring..._and_nursing_care/continuingNHShealthcare.htm ). Given her current situation in hospital, she might receive far better care in a setting geared to medical care for people with dementia.

    Also, even if this path was taken, it is not an irreversible one. When your Nan recovers her physical equilibrium, it might still be possible to bring her home from the EMI nursing facility. If, on the other hand, she settles in well there, and you can see that she is well looked after, 24 hours a day, your family might feel that this move could be more permanent.

    It may also be that with the present circumstances, all the services will be willing to put in a great deal of effort to find a good placement for your Nan and possibly fund the placement as well. I don't mean to sound cynical (well not too much), but the level of service you get can sometimes depend on how clearly the need is actually perceived by people in authority.

    Take care,

  13. emscub

    emscub Registered User

    Dec 5, 2003
    I guess the one thing that really worries me is where will actually take her. There are a number of EMI's in the area, and I am quite sure they don't offer nursing facilities, so that leaves us in a predicament. I'm also unsure as to how likely a home is to take someone with mrsa? Does anyone have any experience of this?

    I also don't know how you actually go about getting continuing care, as no-one has mentioned this, and I'm quite sure they won't unless we try to persuade that it is needed, as - being cynical - I don't believe they will offer to pay if the money can come from anywhere else.

    Obviously we've also got the worry of the house (as I've mentioned before) but I did seek some advice the other day, and was told that even though they are likely to try for the house things are in our favour and they don't stand a great chance of gaining money from it for payment towards my Nan's care.

    I think my Mum is just unsure who to turn to and exactly what to say. The hospital concerned is a very small community hospital with only a few beds across a mens and womens ward (my Nan is stuck at the end of the mens ward), and the staff so far have been less than interested, shall we say.

    PALS may be a good idea, but now my Mum has agreed to the care home idea, I'm not sure what she should say to them.

    Now a bit of GOOD news!! I got my Uni results today and have gained a first!! Yay! So now I'm off to Bristol Uni in Oct to train as a social worker.
  14. Katy44

    Katy44 Registered User

    Sep 14, 2004
    Hi Emma,

    Firstly, congratulations on your result! That's fantastic news.
    We are in a similar situation with my Grandma although I have to say it's nowhere near as bad!
    She was admitted to hospital to a dementia ward after the situation of her living at home with my Grandad came to a head. She moved straight from the ward to a home.
    We also weren't very impressed with the hospital care she got - Grandad took all her laundry and it did occur to me to wonder what happens to people without relatives or friends.
    However, she's now been moved to a home where they have EMI and EMI nursing (if that's the right term). She's in the EMI section, but we have been really pleased with the place, the carers there are fantastic.
    Anyway, just to let you know that these sorts of places do exist, keep pushing until you find one. Of course I don't know how MRSA will affect the issue but surely that needs to be part of her assessment before she is moved.

    Anyway, sorry I can't be more help but keep us updated and look after yourself.
  15. Sandy

    Sandy Registered User

    Mar 23, 2005
    Hi Emma,

    Congratulations on your First! That is a great achievement, even more so when considered what you've been dealing with at home.

    As for care homes in your area, I have posted recently about using the Commision for Social Care Inspection's web site to do an advanced search to find EMI nusring homes. That Talking Point post is here: http://www.alzheimers.org.uk/TalkingPoint/Discuss/showthread.php?p=15689#post15689

    An example of a search for EMI Nursing centred on Bath might produce something like this:

    Example of CSCI search for EMI Nursing 20 mile radius of Bath

    It really is a case of reading the individual inspection reports, ringing round to check out waiting lists and then making visits. Your grandmother's social worker should be able to advise on all of this, and since you're looking for the highest level of local authority funding possible, SS involvement is a given. Having access to the CSCI site does can at least give you a rough idea of what is available in your area.

    Take care,

  16. Jude

    Jude Registered User

    Dear Em,

    Wonderful news about your exam results. Well done...!!

    Do hope the previous helpful posts will give you much information to follow up to assist Nan.

  17. Sheila

    Sheila Registered User

    Oct 23, 2003
    West Sussex
    Well done Emma, lotsaluv, She. XX

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