1. Margarhett

    Margarhett Registered User

    Apr 30, 2004
    22
    Manchester
    For the past 2 months my husband has been in the psychiatric ward of our local hospital, I've been told he has dementia he is 45, I want my husband to come home on his discharge from hosiptal however I have been told he must go and live in a care place, neither my husband or I want that. I want to care for him at home until becomes ill enough to warrent such a placement which he is not at the moment. I am organising day care in an early onset day centre and can set up care at home as well. I am a nurse and understand what I am taking on.
    I feel deverstated that the hospital see my husband as someone who should be put away.
    I also requested that as it is our wedding anniversery next week could I take my husband home for the day to be told - no.

    The thought of life without my husband is heartbreaking, and living alone is becoming traumatic.
    Is it wrong for us to want to spend some extra time together while we can.
     
  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    This is a nightmare, isn't it?

    You have not said anything of the circumstances whereby your husband was placed in the psychiatric ward, nor of the symptoms he was showing before that time, nor of his condition at the moment.

    It would help to know some more detail....

    Someone else will be better placed to know about this, but my impression was that the only way they could keep a person in a ward against the wishes of the patient or their relatives would be if they had been sectioned.

    The wish to have a loved one at home until the very last possible moment is a strong one, and, I believe, should be respected as a first priority by the medical fraternity, as long as no-one is put in any danger.

    I'd have thought that a day out for an anniversary would have been a good test for them to see how well you would both respond to being home together again.

    In the first instance, but also in ignorance of any real facts, I'd press them HARD to get that arranged, even if they want to send a nurse along at intervals.

    The main problem would be in being able to return your husband to the hospital; he might simply say no.

    One thing that the medical folk tend to forget is the effect of all this on the partner of the person in care. It is devastating. Remind them of that!

    Try and let us know a little more detail, if you can?

    Hang in there; the stage you are at now is about as bad as it gets, which is not to say that it gets very much better after.

    Sorry I can't be of more comfort, but I've learned all this the hard way with my wife.

    Very best wishes
     
  3. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    I agree with Bruce,I have always understood that only if a patient is sectioned can they be kept in hospital,and then only for a limited period.
    Do you know what consultant you Husband is in the care of?
    Wouldn't the way forward be an interview with the consultant who is caring for your husband?
    I would try this first, if no satisfaction is forth coming then follow the complaints procedure.
    Good luck
    Norm
     
  4. Margarhett

    Margarhett Registered User

    Apr 30, 2004
    22
    Manchester
    Thanks to both of you for your messages. To add some further information.
    My husband his name is Bobby, is in hospital at his own free will and not sectioned, due to his illness he gets angry at times although his bark is worse than his bite, he's fine with me and I can manage him.
    He would not be a bother to anyone else.

    Before he went into hospital he would shout, and became forgetful either that or he was very calm and peaceful and would look to me all the time and as I said I could manage him.
    He went to the hospital to get a diagnoses, treatment and then to return home we never wanted this.
    As for me I just wanted a little support maybe a bit of respite but not to be parted from Bobby for the rest of our lives.

    You are right they are not really thinking of either of us as I believe that it would do my husband no good to put him into care at this stage, and it is making my own life a hell.
    I have written a long letter explaining my point of view and I hope the consultant will listen to me.
    I will fight to get him home if I have to.
     
  5. Ruthie

    Ruthie Registered User

    Jul 9, 2003
    114
    South Coast
    Dear Margarhett

    It is my understanding that unless your husband was admitted under a section of the Mental Health Act, they can not keep him in there against his or your wishes.

    If he was admitted under a section, for his own protection or that of others, then you would have had to give your consent before he was admitted, and the papers would have had to be signed by a Social Worker and two doctors (usually his consultant and GP), so you would know if that had taken place.

    Even if he is in under section, the nearest relative can apply for him to come home, and the hospital Mental Health Act Managers have 72 hours in which to issue a "barring certificate" if they wish to detain him (I think I am right, as I looked it all to see what the position was regarding my husband). This can be done on the grounds that he "is likely to act in a manner dangerous to other persons or himself".

    I think I have got this right, but it would be a very good idea to contact the Alzheimer's Society helpline on this one, as they will have the facts.

    It is essential that you discuss this with your husband's consultant as soon as possible, as the longer your husband stays in hospital the more difficult it will be for him to adjust to returning home.

    Best wishes

    Ruthie
     
  6. Sally

    Sally Registered User

    Mar 16, 2004
    114
    London
    Dear Margarhett,

    I was so sorry to hear about the problems you and your husband are facing.

    No one can be forced into care and there is a Court precedent to enable someone to receive NHS care in their own home including terminal and palliative care (the Pointon Case, I can give you more details if necessary). You should not be bullied into accepting this plan and could remind both the Primary Care Trust and Social Services Department of choice and the fact there is a duty on the NHS to offer alternative care packages.

    Have you had a care plan approach meeting in which you had a chance to air your views? If not, request one.
    You could ask the team dealing with your husband why they feel you would not be able to cope with him at home and how they could support you at home with him. They have a duty to act in your husband's best interests and if you feel they are not, complain.

    Finally, contact the Patient Advisory Liason Service which should be based at the hospital. They are independent advocates who support families of patients if they are thinking of or are in the process of making a complaint.

    Regards,
    Sally
     
  7. Margarhett

    Margarhett Registered User

    Apr 30, 2004
    22
    Manchester
    Thanks for your replies Bobby is not on a section, and if they try and put him on one I will complain.
    I have been in touch with a community unit that specialises in the care of early onset dementia and now have someone on our side who is going to speak to the consultant at the ward round next week. He said that it would be of no benifit for Bobby to be locked up at this stage.

    I would be delighted to get the information on the president you mentiond, as I will not let them take Bobby into a care place without a fight.
     
  8. Sally

    Sally Registered User

    Mar 16, 2004
    114
    London
    Hi Margarhett,

    If you click on this link below it will take you to the area on the Alzheimer's Society website which talks about Pointon.
    Although your husband may not qualify for continuing care, the case demonstrates that people can care at home if they have the right support.

    The Alzheimer's Society also has a legal and welfare helpline that is open daily 2-4:30 on 020 7306 0801 if you need further advice.


    http://www.alzheimers.org.uk/News_and_campaigns/News/040202pointon.htm

    Best wishes,
    Sally
     
  9. John Bottomley

    John Bottomley Registered User

    Apr 7, 2004
    30
    - I think this is the key point, and really should be clearly (and repeatedly) made.

    Case law means that people with dementia can be kept in hospital without being on a section if they're not making active attempts to leave. If they do wish to leave then either they leave, or a section is used. Being coercive just isn't fair or lawful!

    Your husband's young, for such a youthful individual to be in care when he's a wife (with nursing training) to be denied an opportunity to spend more time with him seems surprising. Good practice would be to discuss concerns with you, then work out how those concerns could be addressed with him being at home and having support. Only if problems were so significant that he'd suffer from being at home (and his needs could better be met with 24 hour staff) should this even need to be explored.

    I'd suggest you have a word with the team looking after him to clear up what their concerns are, and whether these could be addressed with support to keep him at home with you.
     
  10. Vik

    Vik Registered User

    Jan 29, 2004
    12
    Derbyshire
    I agree with all that has been said. It is absolutely outrageous to be treated this way.

    My dad is currently in hospital (by consent) and is waiting to be moved to a home. He is 59 now but is much further down the line than Bobby sounds and needed full time specialist care that we could no longer give him.

    I am certain that they cannot keep Bobby there against your/his wishes. All of the above suggestions are good ones and I whole heartedly second them.

    I just wanted to say, you really do have to shout and make your feelings heard in this dementia nightmare. I am a lawyer (therefore used to fighting and shouting!) and I have recently been fighting to get my Dad continuing care funding. It is absolutely true that the squeakiest wheel gets the oil. If you don't make your feelings heard, there are many people who won't bother to ask you. I have recently been successful in my mission, but I do wonder if that was just because they were sick of hearing from me, quoting at them all of their duties, the criteria they should use and any other authorities I could find! We are not there yet, as he is still in hospital, but at least now we are getting there!!

    The other thing I want to say is please don't give up. It is hard, but at the end of the day, fighting for what your loved one is entitled to means that you can rest at night knowing that you are doing everything you can. This is equally true in wanting to have Bobby cared for at home, by you, with support. My mum has been at the end of her tether on many occassions. She uses this message board a great deal and it is a constant source of support, advice and comfort for her. It really makes a difference talking to people who know what it's like. So I hope it brings you similar help.

    Take care of yourself and let us know how you get on.
     
  11. Margarhett

    Margarhett Registered User

    Apr 30, 2004
    22
    Manchester
    I am so delighted with the care and support I have had from the people on this message board, I am a new member but you have been so kind I need a friend and someone to suport me right now and really do thank you all for caring.

    I will never let Bobby down, and the man is desperate for my support so it's his. Now I have the support of the outreach worker from the young onset dementia day centre he and I will be speaking to the consultant next week and if I have anything to do with it I will get them to let Bobby home ASAP.

    Just wanted to say that I have been told that although Bobby is informal if he tried to leave they would section him, it seems that Bobby is something of a rare bird and should not be on a psychiatric ward this is a problem for the nuro-surgical department.
    However they do not know the best way to treat him and so seem to think locking him up for the rest of his days is the way to go - no way!

    As I pointed out they are treating him like someone who has committed mass murder.

    All the best,
    Marga-Rhett
     
  12. Margarhett

    Margarhett Registered User

    Apr 30, 2004
    22
    Manchester
    An update there was a meeting today and we put our plans for Bobby to the team who are caring for him, and all went well. We must do the same next week as the consultant was away on business.
    But it seems that the team were impressed so next week Bobby will be given the go ahead to come home.
     
  13. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    First point must be to say "well done you".

    This illustrates how active interest and participation by family [or friends] can make a big difference. I fear for those who do not have a champion.

    Do please let us know how things develop.
     
  14. Margarhett

    Margarhett Registered User

    Apr 30, 2004
    22
    Manchester
    Got the good news that Bobby can come home on weekend leave from next week, also go out in the day.
    He will have a gradual discharge and so is coming home, and will also go to the special day centre for early onset dementia.

    I am delighted and can't wait for his return.
    So never give up if you want something badly enough you can make it happen!

    Thanks to you all for your suport and best wishes.

    Marga-Rhett
     
  15. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Them 0 - Us 1

    That's such good news! Well done.

    Please keep us up to date with your experiences.

    Best Wishes
     
  16. Helen_old

    Helen_old Registered User

    Dec 29, 2003
    26
    WALES
    Just wanted to say i'm so pleased to hear your news , your an inspiration to others .

    WELL DONE YOU !

    Enjoy your time together

    Take care

    Helen
     
  17. Margarhett

    Margarhett Registered User

    Apr 30, 2004
    22
    Manchester
    Thank you Helen, I have had Bobby home this weekend and we had a great time! It's lovely to cook for him and see him smile, took him for a hair cut as well.
    And visited a couple of friends and he told me how much he enjoyed himself.

    When I took him back to the ward one of the nurses said "I have never seen you so happy", because he was smiling so much - now that makes it worthwhile fighting for him to come home.

    The staff are all supporting him coming home now and to be fair they have all care for Bobby well.
    I will collect him again tomorrow, and every day until he's discharged.

    Best wishes,
    Marga-Rhett
     
  18. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
  19. Margarhett

    Margarhett Registered User

    Apr 30, 2004
    22
    Manchester
    Just thought you might like to know that Bobby is coming home for 4 days next week, Thursday - Sunday. and will be discharged shortly afterwards.

    He told me that he is so happy to be coming home, but was pleased for the care he has had in hospital.
    He also said how dreadful he felt before he was addmitted.

    Things have worked out for us, because I would not let the doctors have the final say what happened to Bobby, I have got lots of support and am ready to take on Bobby's care.

    Wishing you all the best
    Marga-Rhett
     
  20. Margarhett

    Margarhett Registered User

    Apr 30, 2004
    22
    Manchester
    Another update Bobby is now home and starts at the early onset day centre tomorrow (Monday 28 June), he is really looking forward to it and the only problem I have found with him is that he finds it difficult with large numbers of strangers, so no trips into town or the football that he always enjoyed.

    There is also a chance of getting him to join the buddy sceam to pair him up with someone who has an intrest he dose and who will take him out, Bobby has identified golf as something he'd like to do and it will give me some respite too!

    We are also doing out the smaller of the spare bedrooms as Bobby's room to give him some space from me! he can watch TV in there read or just chill out.
     

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