Am I becoming institutionalised by degrees??

Discussion in 'ARCHIVE FORUM: Support discussions' started by TinaT, Dec 17, 2007.

  1. TinaT

    TinaT Registered User

    Sep 27, 2006
    7,095
    Bolton
    I'm not sure how to word this posting as it is Christmas and I have no wish to spoil the true spirit of the season. From reading other threads I am not the only one who is so very very tired and dispirited by the constant battles and struggles I have almost on a daily basis.

    My husband Ken is still on the EMI ward at the local hospital. After weeks and weeks of pleading to the Consultant and her staff I have finally managed to get him off the Section 3 of the Mental Health Act. I have had to grovel, beg and plead and be subjected to lectures about 'behaving in a responsible manner'. I am a retired senior teacher who has lived the whole of my life in a 'responsible manner' I have defended the staff, thanked them and tried in every way to help them. I have complied in every way with whatever the staff have said and yet I was treated as if I was a silly, irresponsible child who needed to be kept in check.

    I give you one example of what the section 3 meant. After much pleading I was allowed to take him home twice a week for 4 hours - on one of the home visits I had run a bath for him and then realised that we would be about 20 minutes late getting back to the ward. I phoned the ward to let the staff know and was told by a senior nurse that if I did not get him back in time they would send the police to collect him!! Imagine how I felt as I let the bathwater out and rushed him back to the ward. This is a man I have been married to for 40 years!!

    The relief I now feel in being able to take him home twice a week without worrying about being a few minutes late back on the ward is enormous. I have spent months sitting on a public ward with no privacy and peace whatsoever. To be able to sit in our own home for a few hours and eat a meal together is heaven. The change in the way the staff treat us both now the Section 3 is no longer hanging over our heads is a wonder. Today Ken wet himself and his slippers were wet through. I asked if I could take him to a local shop to get him new slippers (with trepidation in my heart as it was not one of the agreed days to take him out) I was told by a smiling and relaxed nurse that now he was off the Section I could take him out whenever I wanted!!!

    By the nature of the ward I know that Ken is living amongst some violent men. I have seen examples of this time and time again. Most of the men are not able to move about much and this does help the situation. Also it is easy enough to see when they are getting disturbed and to move out of their way. One man is constantly monitored and trailed by a nurse to ensure the safety of both himself and others and when he is violent he is restrained in his room but with the door open with a matress across the door and a nurse sitting at the door. A humane and safe way to ensure the safety of others. Ken was also subject to 24 hour watching by a nurse the first week he was on the ward simply because he had mistaken another patient for myself and been 'over protective' towards this person. This behaviour happened only twice within the first week and was the main reason he was immediately put onto Section 3. He has never repeated this behaviour on the ward since that time.

    Three weeks ago a new man was admitted and it was obvious from the first day that he was volatile and very dangerous but no check on his movements around the ward was made and no nurse was on 24 watch with him. Ken lived in terror of the man and I reported this to a senior nurse. I was told that my remarks would 'be passed on to the consultant' and the man was left free to prowl around and terrorise both my husband and others. I cried when I got home as I felt I had left my vulnerable husband in a dangerous situation with no one who would protect him.

    Two days ago the man threw a full cup of hot tea around the room and covered everyone. He had to be physically restrained by several nurses from harming another patient. I repeated my complaint that Ken was terrified of the man and was told 'it is the nature of the ward' and nothing could be done. Today the man hurled a nurse across the room and broke her arm. This was a situation which I know everyone dealing with the man could have anticipated. The Consultant was called onto the ward and I hope that finally something will be done to protect everyone. I am left angry and dismayed that this situation has been ignored for all this time.

    I have spoken to other relatives and know that they feel the same as I do about many things which happen on the ward. None of us are brave enough to suggest we all try to get together to discuss our grievances or even simply to support each other in the terrible ordeal of having our loved ones on a long stay elderly mental health ward. The car park is not a good place to talk to other relatives but I am not bold enough to ask the ward sister can I put up a notice to invite other relatives to the coffee shop or some such meeting place. I think along with my husband, I too have now become institutionalised, compliant and frightened of 'rocking the boat'.
    xxTinaT
     
  2. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Dear Tina, I think all of us who have our loved ones in care, whether in a hospital or in a home, feel this to a certain extent. We want the best possible care for our loved ones, but we're afraid of rocking the boat and making matters worse.

    Could you perhaps write and duplicate a note, and hand a copy to all the relatives, arranging a meeting, perhaps for after Christmas?

    Here we have an organisation called User and Carer Involvement, and it's through that that I have become involved in training, and lobbying for improvements. We really are making a difference.

    Perhaps you have a similar organisation, or if not, perhaps you and some of the others could set one up? I don't know how ours was set up, but I've just been appointed to the board of management, so I'll probably find out.

    I'm sure you're not becoming institutionalised, you've done so much fighting for Ken.

    I'm so glad Ken is off section, but it must be very difficult to leave him in those circumstances. Is there any likelihood of you having him home in the near future?

    Love,
     
  3. TinaT

    TinaT Registered User

    Sep 27, 2006
    7,095
    Bolton
    Thanks Hazel, perhaps in the New Year I will try to do as you suggest. Trouble is at this time of the year with the dark and miserable weather, I am not seeing as much of other relatives away from the ward.

    As to Ken coming home - well I have absolutely gone round and round and round in circles for months about this in my head. The Consultant and staff on the ward are quite clear that I would not cope with his anxiety attacks on my own. He is not violent but his extreme panic causes him great distress and his agitation completely overwhelmes him (and me). These attackes are usually in the mornings, then he has a spell of about 4/5 hours of intermittent dozing and calmness when his medication is at its strongest. This is the time I bring him home and we have a few hours together. Mid afternoon his attacks come on with a vengance. He gets very distressed, cries a great deal and constantly paces around wringing his hands. He paces for hours and hours and can't stop until he is exhausted and walking like a drunken man. His back is in a terrible state and he has had many falls with resulting black eyes and head injuries. It is truely dreadful to witness as there is nothing apart from strong medication which will calm him down. We live in a very small bungalow so there is no where I can safely leave him to pace around. He is also obsessssive about me being with him. The ward phone me each evening when he is at his worst and I have a chat with him. He is in a terrible state imagining that some disaster has happened and I do my best to calm him down. In fact I have just had to stop typing this to speak to him on the phone.

    Before he went into hospital we had good help. We had a carer for 15 hours each week but I could never leave them together and go out on my own as he became so distressed. He also went to day care two days each week but as his obsessive behaviour increased the staff felt they could no longer cope with him.

    I just do not know if I will be strong enough to cope with him 24/7. I did ask could he be moved to a nursing home and the consultant gave him a spell of day care off the ward to assess how he would cope. It was a disaster, he was so distressed and agitated that the staff became very worried about him and I had to collect him each time after he had been there just a couple of hours. He also showed psychotic behaviour in believing that another patient was me and refused to let the staff near the poor woman.

    When he is in his calm hours he is so kind and loving and in some ways the man I have lived with all these years shines through. Then the dreaded obsessions return with a bang and bring me back down to earth.

    Will I be happier having him home all the time and coping alone with him? I truely do not know.

    I am much happier in myself now that he is not on the section 3 and feel that we can have some happy moments together still. But I do need to know that he is safe and not in danger from anyone else. What a mess I am in!!
     
  4. DickG

    DickG Registered User

    Feb 26, 2006
    558
    Stow-on-the-Wold
    Hi Tina

    It seems to me that you are desparately in need of rest and being so exhausted you are finding it emotionally difficult to cope.

    Do not be afraid of "rocking the boat", I am sure that you appreciate that expressing yourself calmly and firmly cannot be construed as rocking the boat, after all you are the expert on Ken and they are the experts in dealing with these situations so you are entitled to treat them as equals.

    Just a thought, is it not time for Ken to be moved to an EMI unit in a care home if he is not able to be looked after at home? Have you spoken to social workers about the possibility?

    Hugs

    Dick
     
  5. DickG

    DickG Registered User

    Feb 26, 2006
    558
    Stow-on-the-Wold
    Tina - I have just read your latest posting and your desciption of Ken's behaviour is very similar to a resident in the EMI unit of the care home Mary has recently moved into and the staff cope with him with kindness and care. As Mary suffers from extreme anxieties I looked at a number of homes before I found one that fitted my requirements and it was worth the effort.

    You are not in a mess you just need help to get back on an even keel and once you do so things will fall into place. I am sure you will find help and understanding on TP.

    Hugs

    Dick
     
  6. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Dear Tina, it's such a difficult situation for you -- and for Ken, it must be awful living with those panic attacks.

    I think Dick has a good point. John is in an EMI unit, and I'm sure they would be able to cope with someone with Ken's problems. Why not have a look round and see if there is anything locally.

    You would still be able to bring him home in the afternoons, and he would have his own room, so would not have to be frightened by other residents.

    Try and relax over Christmas. You don't have to make any decisions just now.

    Love and hugs,
     
  7. TinaT

    TinaT Registered User

    Sep 27, 2006
    7,095
    Bolton
    Hi Dick,

    Hugs back to you. You have your own problems to deal with and although you don't say, it must be taking a lot out of you too. I think I must be the most awkward person in the world. I visited three privately run EMI homes in my area (a previous posting is all about that experience). I was horrified by what I saw. Residents all seemed to be herded into one room, the places stank of urine and I was truely dismayed by the whole experience. I wrote to CSCI and complained that they had not done full inspections and listed my complaints. They wrote back to say that they had inspected the areas which the Dept of Health felt were crucial and had passed my complaints on to the three homes. Two homes responded well, investigating my complaints and partially upholding them. They also told me what they were doing to correct matters. The third home agressively defended themselves and refuted everything I had mentioned. I know I would not settle if Ken had to go to any of these homes. I did find a lovely home and would have been happy for Ken to be moved there but the consultant has said that she would not agree to Ken going to an EMI home because of his psychotic behaviour (him thinking another resident would be me). She felt that if she did let him go he would only be returned back to the ward at the hospital..

    It has helped me enormously writing things down and getting your suggestions. Am feeling much calmer and ready to face tomorrow xx Tina
     
  8. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Sorry Tina, I'd forgotten you'd already gone down that road. But if Ken is not violent, I don't see why an EMI unit couldn't cope with him, particularly as they said they'd try.

    Sorry, that's not helpful at all. I do understand how hard this all is for you, and I'm glad you're feeling a bit more relaxed.

    Love,
     
  9. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,537
    Kent
    Dear Tina,

    Your posts are so full of despair, I wish there was something I could say to help.

    To be put in the position where you have to ask for permission to take your own husband home, is beyond belief.

    If you can gather the other relatives around you after Christmas and draw strength from each other, perhaps you can persuade the ward staff to show a bit of humanity towards those you care for. It sounds as if they are being treated as units rather than people.

    You are not becoming institutionalized, you are being worn down.

    Take care, love xx
     
  10. DeborahBlythe

    DeborahBlythe Registered User

    Dec 1, 2006
    9,222
    I'm not sure what this consultant is thinking of. No one now believes that hospital based care is the proper setting for people with mental health problems unless they have physical ailments in addition. The whole thrust of care policies for people with mental health problems has been to try to help them to live closer to their communities, and not on hospital wards. Mistaking somebody else for you may be embarrassing and a little bit difficult to manage if staff are unaware of what may be going on, but it's scarcely a reason to spend the rest of ones days on a hospital ward.It sounds crazy to me, though I hasten to add I am not clinically qualified.. I've just been around along time and don't always take no for an answer. I'd ask for a second opinion. I'd also ask what the recommended care plan is for your husband.
    I sympathise with your view of the available EMI units. If you have found a good home I would cultivate them. Ask them if they would come in and assess your husband with a view to admitting him. I would go over the consultant's head and write to the Chief Exec of the hospital explaining your misgivings about the consultant's opinion. If you can tell the Chief Exec that you have found a home which you are happy with and which has agreed to accept your husband, I think any sensible Chief Exec will not spend long arguing the toss with the Consultant. He or she will want to see your husband placed in the home and the bed cleared on the ward. Just a thought. Love Deborah x
     
  11. TinaT

    TinaT Registered User

    Sep 27, 2006
    7,095
    Bolton
    Dear Deborah,

    How good to hear someone with the sense they were born with - I too think that if Ken had time to settle in the problem would go away or be easily dealt with by the staff. If it happened that he was being difficult because he thought someone was me, then they could phone me up and I would be there within 20 minutes to sort it out for them!! The only time he shows this type of behaviour is when something new happens to his surroundings! The great difficulty I have is that the Home which I would love Ken to go to is a Local Authority run home and the Consultant is also attached to this home in some way. She visits there regularly and they know her very well. I went to the home some months ago to ask if they would take Ken. He had previousoly stayed there for a few days on respite care b ut I had to bring him home early because of his distress at being separated from me. The deputy manager I spoke to said that of course they would have him permanently and said that she thought Ken was a lovely man. However she stressed that I would have to get the Consultant's permission. The consultant is the leading one at the hospital. She is the boss of all the psychiatrists at the hospital!!

    Talk about being between a rock and a hard place!!!
     
  12. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Tina, I found with John that it was a huge advantage transferring from hospital rather than from home.

    To him, it was just another hospital, only better, because he had his own room and bathroom.

    I know that Ken is more aware, and you've been bringing him home from hospital, but he might also see it as an improvement.

    I know how hard it is to shift these consultants though. Talk about set in stone!:eek:
     
  13. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    3,725
    North Derbyshire
    I have no experience of this kind of situation, but Deborah seems to have the solution. Find the place you want and present it to them on a plate. Tell them why the other alternatives are not acceptable. I bet they will agree with you. Sometimes you have to be rather pro-active and assertive and even aggressive, and I think this is such a case.

    Much luck and love in your quest for proper care.

    Margaret
     
  14. TinaT

    TinaT Registered User

    Sep 27, 2006
    7,095
    Bolton
    The Consultant has warned me that she has the power to put Ken back onto a Section 3 at any time she feels it necessary! At my last meeting with her she insisted that for the time being things had to remain as they are. I was so very anxious to get him taken off the section that I agreed with everything she said. I know if I had disagreed with anything she would not have taken him off the section. I had already researched what I could do if she refused to take Ken off it.

    I would have had to go before a tribunal made up of another psychiatrist, another professional in the health field and a knowledgeable lay person. The hospital would have a lawyer, the consultant and other medical staff to back them up. This seemed to me to be a very precarious thing to undertake and if I had lost, then all would have been lost for Ken and myself. I therefore leaned over backwards at our meeting to try to get her to take him off the section without resorting to the last measures.

    I will be able to have another meeting with her in February. She did mention that she had spent a lot of time recently on Ken's case - more than any other patient on the ward! So I will have to let sleeping dogs lie until then but this thread has certainly c leared my brain for when the next meeting comes up. Through writing all this down I realise that Ken's problem of psychosing another patient to be myself only happens when he is put into a new environment and that it does go away as he becomes more familiar with the new situation. I can get to the home whenever this happens at the beginning and I'm sure it can all be resolved.

    In the meantime I have to balance the tightrope of trying to keep Ken safe and as happy as he can be made without 'rocking the boat' xsx TinaT
     
  15. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,537
    Kent
    Dear Tina,

    I wonder if there is any available advocacy support either from the AS or Age Concern, or the Princess Royal Trust for Carers. It would surely help you to have someone with you who knows the issues and who knows the system.

    I`m not for a minute suggesting you aren`t capable of attending this meeting by yourself, but your emotions are involved and it might be good to have someone to rely on to back you up.

    Just a thought.

    Love xx
     
  16. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,439
    To add to everyone else's suggestions have you tried Mind? I would think they would have the most experience dealing with this sort of thing.
     
  17. TinaT

    TinaT Registered User

    Sep 27, 2006
    7,095
    Bolton
    Thanks to everyone. Before the next meeting I will phone MIND up to get their advice. xx TinaT
     
  18. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,439
    Tina - can I just say I'm absolutely appalled at what you're going through with this. Prisoners and their relatives seem to have more protection under the law. I quite understand why you bite your lip in order to get the section removed when you realise just how much power these people have.

    Love
     
  19. DickG

    DickG Registered User

    Feb 26, 2006
    558
    Stow-on-the-Wold
    Dear Tina

    If making a mistake over recognising people is psychotic behaviour then psychosis is just another symptom of dementia!

    The consultant has diagnosed Ken as having psychosis and you have a right of a second opinion under NHS regulations and you do not need to go to a tribunal as that would only apply if he were sectioned again - at least that is my reading of the situation. You need to seek advice from a knowledgable source.

    My experience in trying to find a suitable home is similar to yours but after much searching I at last found one that suited my requirements, I hope that you find success.

    Hugs

    Dick
     
  20. TinaT

    TinaT Registered User

    Sep 27, 2006
    7,095
    Bolton
    Some good news at last - Ken has been given a room of his own. I am overjoyed! He has had to share a room with another patient and they have quarrelled with each other for months about clothing, shoes etc. I have asked the staff time and time again to move Ken as both men are a bad mix with each other and Ken is afraid of the other patient when he starts shouting at him.

    When I went to visit Ken on Monday he had a black eye. The staff found him wandering around quite dazed in the middle of the night. Both myself and staff have asked Ken how it happened but he has no idea. The patient he shares a room with also said he had no idea how it had happened. I think the room change has been as a result of this and because the violent man I mentioned at the start of this thread has caused such a lot of havock on the ward that several men have been moved to different bedrooms.

    The ward manager warned me that this was not permanent as she was very 'full up'(presume this means the ward is full of patients). She was talking to another set of relatives at the time so I couldn't clarify the situation. It was my day for taking Ken home and when I got back on the ward the manager had gone home. So I have no idea how long this temprary good luck will last.

    Anyway this is the best Christmas Present in the world for me and I am thrilled, thrilled thrilled!! Finger's crossed that this will not be changed again, at least not for a few weeks.

    Have to say that throughout all my troubles and woes there are members of the staff who have been very kind and understanding and I have always been grateful for the way all of the staff treat the men. I do see things which go wrong but I also see staff who are kind and compassionate to the men. I am so grateful for this. xxTinaT
     

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