Has anyone else heard of an experience so appalling?

Discussion in 'ARCHIVE FORUM: Support discussions' started by Les, Nov 20, 2007.

  1. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Not much for me to add to what others have said, except:

    you need to be careful with generalisations. Restraints may well be necessary for the protection of residents in some cases.

    An example.

    My Jan these days has mostly to be either in her special chair, or put into a 'soft' [aka padded] room. In her chair she is restrained, with my agreement.

    Restraint in this case is a waist belt - like in an aircraft.

    This is there to protect her from falling out. Without the belt she would have to stay in the soft room all day - not as good as in the chair for her.

    A passing nurse who should have known better reported the home for using restraint with Jan, without first checking why, and whether it had been agreed by all parties. Eventually the CSCI agreed the home was correct.

    Restraint is not a dirty word - unless restraint is used inappropriately.

    I'd be guessing they may not have had residents who genuinely needed the safety afforded. Jan is the only one who needs a belt in her home, which specifically caters for advanced cases.

    I hope you have much better experience with the new home - the first is clearly in severe need of investigation.
  2. noelphobic

    noelphobic Registered User

    Feb 24, 2006
    I think it's all been said and there's nothing I can really add. Obviously it is horrifying in the extreme and I hope your complaints result in some changes. My mum has been in residential care for 3 years and there were some problems in the way that her first 'care' home looked after her. However, they were nothing in comparison to your experience.

    The following organisation may be able to help if all else fails. You have nothing to lose by contacting them.

  3. Zooey

    Zooey Registered User

    To one Lesley from another.

    I've been watching this thread unfold all day from work, where sadly I have been unable to post a reply. I have been horrified, haunted and at times felt physically sick. You and your family have experienced our worst nightmare.

    First of all let me say that I know very little about AD. My poor old Mum only has short term memory problems and we're looking at care homes more for her lack of mobility and medical conditions. I know nothing of restraint that might be used, but I've read Brucie's reply with interest. Yes - I'm sure there must be cases when people have to be restrained for the safety of all concerned, but that would only be as a last resort, with permission from the next of kin and only for as long as absolutely necessary. In such cases, the record keeping should be faultless. In this case it didn't even exist.

    I've thought long and hard about the word I'm going to use, but my gut feeling is that it is the right word. This is abuse and at the very least should be reported through the correct channels, to the homes inspectors, the GP, consultant(?), care worker, MP and the police. It's up to you how strong you feel and whether you can handle media attention. It should certainly be drawn to the attention of as many people as possible. This shouldn't have been happening in the 20th century, let alone the 21st.

    On a more practical note, you say you've taken photographs of your father's sores. I'm sure just knowing this has been done will summon all sorts of images for you and your Mum. With the help of the new home, would it be possible to have some "good" photographs taken and put them in a prominent position at home? I know it won't completely erase those terrible memories, but they might serve to remind you they are now well and truly in the past.

    My thoughts are with you.

  4. elaineo2

    elaineo2 Registered User

    Jul 6, 2007
    leigh lancashire
    So Sorry,OMG,things like this make me ashamed that some homes have the title "care/nursing" preceeding it.I am a carer in a home and am devastated that this kind of behaviour exists! I know it must be hard trying to find the right home for loved ones and can appreciate that.CSCI inspection reports are available in homes but are not often read by prospective clients and their families.Behaviour from staff can be masked and procedures not adhered to.Even though i am a decent carer i do know the loopholes that can be missed by CSCI and thats why we are on the ball,someday mr CSCI will catch on!However,the treatment of your father is a case of abuse and if i can find it i will send you the link to report this to POVA(protection of vulneravle adults).Each and every one of the staff were responsible for your dads care and without an authorative restraining order there is cause for concern and you should have been involved from the start.

    good luck in the new home,i hope and pray that this doesn't happen to you or anyone ever again.love elainex
  5. alfjess

    alfjess Registered User

    Jul 10, 2006
    south lanarkshire
    I am furious on your Dad's and your behalf, I know if it were my parents being mistreated like that in a care home I would be gunning for them, (not literally) but would do my upmost to get them closed down.

    What about the other poor people living there, who may not have anyone to fight for them or move them to a safer envirnoment?

    How can any home in this day and age get away with it? It shouldn't be allowed.

    Who recommended this home for respite? Was it SS? If so I would try to make them accountable for your Dad's condition.

    It won't do any good of course, but maybe they will think twice before they use this facility again and so other vulnerable people will be saved from this home's far from adequate care:(

    As Noelphobic suggests, I would contact Action for Elder Abuse.

    I did, this morning for advice and they were very helpful (see my thread)

    Reading your post just makes me so angry and frustrated, because places like this, still exsists in this supposedly enlightened age

    I sincerely hope your Dad gets over his bad experience and can settle down in a much nicer home

  6. sammyb

    sammyb Registered User

    Sep 19, 2007
    How are you feeling now Les? Like so many who have posted a response today, I will go to bed thinking about you, your mum and, of course, your dad. My thoughts are with you and I hope that tomorrow comes very soon for you and that it will be a much better day.

    Love from Sammyb
  7. Margarita

    Margarita Registered User

    Feb 17, 2006
    #27 Margarita, Nov 20, 2007
    Last edited: Nov 20, 2007

    I can understand Bruce when he said the above

    but 24 hours a day in a chair sounds inhuman to me, how was he strap in, around the arms or waste ether way in this day age can not believe that still happen 24hours in a chair also the neglect to his personal hygiene . no wonder your feeling numb you must be in a state of shock only thing about feeling numb is that you don't stay in numbness for more then a few weeks, as you can go into post traumatic shock .

    take care keep sharing your feeling xx
  8. christine_batch

    christine_batch Registered User

    Jul 31, 2007
    It was like reading something for Victorian Times

    Dear Les,
    I wish you all the very best for to-morrow. You only did what we all try to do- find the best for our loved ones. At least your Dad will be out of there to-morrow and I wish you and your parents well in the new Care Home.
    hat is so disgraceful, they shut down good homes because they do not have en-suites. I sincerely hope this Home does not continue to trade as a C.H.
    Take care of yourself. Very best wishes. Christine
  9. fearful fiona

    fearful fiona Registered User

    Apr 19, 2007
    Dear Les

    As the others are, I am absolutely sickened to read all this. Only one other thought to add. The others have recommended contacting the media. The Daily Mail has a special drive at the moment called "Dignity for the Elderly" - if you didn't mind the publicitiy, I think your experience should be publicised as broadly as possible. It is an absolute disgrace (and that is an understatement) that this sort of thing is happening in the 21st century.

    Best of luck, I am thinking of you.
  10. Taffy

    Taffy Registered User

    Apr 15, 2007
    Dear Lesley,

    This is absolutely scandalous no one should be subjected to such treatment. I have come across a site on N/H abuse in Australia and the horror stories are sickening.

    I am really sorry that your dad endured such treatment I do hope and pray that he will be well cared for in the next home.

    These wretched politicians here in Australia are well aware of the plight of some elderly nursing home residents. Everyone can turn away except the poor residents.

    Best Wishes to you and your poor mum, sorry for your torment.

    Take Care Taffy.
  11. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    just to clarify, I am as horrified as everyone else and I totally agree!

    Jan's regime is 2 hours max, then change to soft room for 2 hours.
  12. Les

    Les Registered User

    Jun 23, 2004
    Dear All,
    Thanks for your kind posts, I haven't ever posted here much, despite reading constantly for 3 years and finding great support through other people's stories, but in the past 24 hours I have found it enormously comforting to have people out there who understand. My work colleagues and friends are all very sympathetic, but unless you really know what this all involves, it's hard to empathise.

    Dad moves into the new care home this afternoon. Mum went there yesterday afternoon to sign contracts and to look at what is to be his new room. She met dad's designated nurse and his designated carer - and already that makes me feel better - that we have a point of contact and that dad will have a chance to build up a 'relationship' with some individuals. Mum also met several other carers and nurses and all were so kind to her. She also spoke to some of the residents of the EMI unit, and there were some real characters who were really chatty. She said that she drove away with a smile on her face, and this is the first smile in ages.

    We have written a lengthy report of dad's experience. It has now gone to the following:

    The Care Commission in scotland
    The healthcare group who manage the home
    Alzheimers Scotland
    The local MP
    Dad's social worker
    Dad's GP
    Dad's consultant
    Crossroads (locally)
    Help the aged
    Age Concern
    Action on Elder Abuse

    And I'll send it to more places as I think of them. We aren't going to send it to any media. Part of me would like this 'nursing home' splashed all over the national newspapers and investigated by Watchdog, but Mum would absolutely hate to have any media attention at all. She wants to maintain Dad's dignity, and doesn't want his situation pored over by all and sundry. Of course I have to respect that.

    You've all been so kind and supportive. Some individual notes:

    Bruce- I completely understand where you are coming from. I do see there being a place for 'restraint' when restraint is needed for the safety of the patient. In fact if we had visited the home and found dad with a waist strap on a couple of hours a day it would have been fine. perhaps one day dad will also have to use a waist strap like your Jan. It seems so sensible.

    The problem was the 24 hours a day thing, and the manner in which it was done. Dad had a strap around his chest. He was in a 'reclining' chair with his legs up. He absolutely hates having his legs up - he needs to feel the ground under his feet. So when we arrived each time we found him essentially lying on his back, with the strap around his chest, and curled up in a sort of foetal position with his knees tucked under his chin. Wriggling and wild eyed. We didn't recognise him. He was obviously kept like that so there was no way he could get his feet down to stand up. We told the senior carer present that dad must not have his legs up, and the 'carer' shrugged. The next day the same happened, and the same carer was in the room. We told him again, and reminded him that he had been there the day before when we spoke to him. He just shrugged again.

    Dad is in the moderate to severe stage of AD, he has become very very difficult to keep still recently and he has very bad mobility. This (amongst other things) led to us having to use a care home. the reason dad is agitated and always stands up is because he thinks he needs the toilet. The AD drug trial he has been on for 3 years (the one that turns your urine blue) also causes bladder irritation - and so you do have to go to the toilet more often. It's a comfort thing for him. I understand that this is a problem because when he stands up he often falls over. But the care home prevented dad EVER going to the toilet, even though he isn't incontinent. This was torture for him. If you are in the same room as dad, when he stands up you can reason with him - you can say 'Look Dad, you just went to the toilet 5 minutes ago, so you don't really need it' and he will sit down again. He only lashes out if you try to restrain him. I would have understood the carers restraining him with a waist strap on those occasions that there was nobody around to be sure he wouldn't fall over. But for the majority of the day he was in the communal living room, in this hideous reclining chair, and surrounded by another 15-20 residents in chairs, and a couple of 'carers'. There was no need. And not to let him even go to bed at night....inexcusable. We found that he wasn't even always in pyjamas at night. Just strapped in this same chair with his dressing gown on. There was a pressure pad on the floor by his bed - in the room he never got to use, to alert carers if he got up, but they didn't let him use it.

    but Bruce, you are right, there is a place for proper restraint used responsibly.

    Vall - I'm so sorry you had to read my post. My Mum cared for Dad for over 10 years, to the point at which she was at breaking point. And yet she didn't ever want to give up. She and dad are very proud. Despite dad's illness he was always immaculately turned out, with polished shoes, smart trousers and a smart shirt, neatly cut and brushed hair, shaved perfectly every day, bathed daily etc etc. he has more expensive deoderant and 'perfume' than me or mum! She couldn't bear the thought of him not having her one-on-one care. But of course unfortunately she got to a point where she couldn't provide safe and adequate care for him. And we know that somewhere there is a place where people can do that for him. The place he moves into today looks really promising. I will let you know how he gets on and hope that I have some positive news for you.

    Lesley - you are right, it is the right word. When I was telling a senior staff member at the 'care home' what all our complaints were I said to him: "We have placed Dad in this care home to receive care. And instead he has received abuse." The staff member looked resigned, and asked me if I meant that. And I said yes I did, categorically.

    Elaineo2 - thank you, it's great to hear from a carer - and I hope I find people as kind as you at dad's new 'home'

    Alfjess - you are right, I am worried about all the other people left there. When we have sent the report to all the places mentioned above, we said we realise it's now too late to help dad, but that we want to be sure those remaining there have someone to speak up for them. It makes me weep to think of others there suffering in this way.

    And the photo idea is a nice one. I hope I never have to look again at the awful photos we took - but we may have to provide them.
    In the meantime, today mum is filling dad's new room with nice photos of us all together. There's one of myself, my husband and Dad, just a year and a half ago, in barcelona. We took Mum and Dad on a trip there - my husband pushed dad in his wheelchair all over the cobbled city, with dad giggling. It was a wonderful trip, if exhausting. Dad didn't take it all in, but I'll never forget him on top of the Pedrera, one of the most beautiful Gaudi buildings in Barcelona - we got him out of his wheelchair on the roof and stood him up to look at the crazy architecture - it was a blue blue day and everything was sparkling and he looked so so happy and I asked him if he liked it and he said "It's just wonderful". Lovely memories.

    thanks again
  13. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Dear Les

    Thank you for your post, and for giving us further details. It's sheer cruelty to prevent someone going to the toilet when they're not incontinent. Your dad must have felt so humiliated. And to keep him strapped in a chair 24 hours a day is disgusting. No wonder he has pressure sores.

    But you've ended on a very positive note. The new NH sounds lovely. I hope your dad settles well there, and you and your mum can focus on those happy memories again. Let us know.

  14. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Thank you Lesley for such a thorough update. You`ve done well.

    I hope the horror is well and truly behind you, and I would really like to know what responses you get from all your formal complaints.

    Love xx
  15. Linda Mc

    Linda Mc Registered User

    Jul 3, 2005
    Nr Mold
    I have only just seen this post and am truly horrified at this story.

    You have had good advice from other members so all I can add is my heartfelt sorrow at such an appalling situation. I hope your dad settles in his new home quickly.

    Love Linda x
  16. sue38

    sue38 Registered User

    Mar 6, 2007
    Wigan, Lancs
    Hi Lesley,

    I am pleased to hear that things are more positive and that your Dad is on the way to receivng the care he deserves.

    I hope, if you have the energy after all this, that you do pursue the complaint against the home. Very often we can feel incensed about the way we have been treated and write a long letter of complaint, and then things calm down and we never pursue it.

    Sorry this wasn't meant to be a generalisation. I was trying to say that I couldn't help Lesley with her particular question about whether restraint was used in care homes as it was something I knew nothing about. Also I didn't intend to tar all care homes with the same brush and would like to make it clear that it was only in this particular case that the word 'care' seemed singularly inappropriate when describing the home.
  17. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    NW England
    Well done, Les. I am sure like many other members who log in today - this is the first thread I have sought out to see if there is an update. I am so pleased that things are sounding more positive and hoping all is going well this afternoon....

    Love, Karen, x
  18. 117katie

    117katie Guest

    Dear Les

    Like many other people, I have only today come to read your horrifying post, and I am sure that I was not alone in crying as I read it. My heart goes out to your Dad, your Mum, you and your family. And I do hope you will have happier news next time we read your posts.

    While all this was going on for you and your family, I was talking repeatedly to our social worker about placing my 83-year old Aunt into residential care, as she is currently stuck in an assessment mental health ward, and has been since July. I have "chosen" one home, on the basis of visiting and talking several times with the Manager there, but now I am beginning to be fearful again. Especially since the social worker indicated strongly that I will not have the final choice over precisely which residential care home my Aunt moves to.

    My husband too has read your posts and all the replies, and we agree with everyone who has commented - not a lot to add really. This is abuse, and as my husband said to me today "if I restrained someone in a chairlike that, and if I treated someone like that, then the relatives of that person would contact the police and report me, and I would probably be prosecuted for assault". Your immediate priority is of course your Dad and your Mum, and I do hope you will find a really genuine CARE for your Dad. But please report this to the Police. If only so that you can then rest that you have reported everything to everyone who might be able to stop this abusive treatment happening ever again.

    Care must mean just that - CARE. Nothing but CARE.

    Our very best wishes to you all,

  19. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Katie, I think you have brought out one of the most horrifying aspects of this case.

    As Les's dad's placement was for respite, presumably it was authorised, if not arranged by SS. If they are prepared to place people in somewhere like that, what does it say about the people who are entrusted with the care of our loved ones?

    It's scary!
  20. 117katie

    117katie Guest

    Dear Hazel

    I don't know ... but I wish I did.

    CARE should mean CARE.

    I was seriously SERIOUSLY horrified by all of this post, from start to finish, and I will do whatever it takes to TRY (because that is all each and every one of us can do ... TRY) I PLEDGE MY EFFORTS AND ENERGIES TO TRY TO ENSURE that it does not happen to anyone else EVER AGAIN.


    No matter what is required.

    KATIE in big capital letters!!!
    Love to each and every one of us who CARES. We are the CARERS.

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