1. Karyn

    Karyn Registered User

    Jan 10, 2005
    Gt Manchester
    Hi All
    Sunday was terrible!
    We had to get the on-call doc out to get a GP referal so that we could get nan in hospital and properly assessed quicker. Gramps had to go back to London with my uncle that day and we were just so bothered at how it may affect her, she doesnt always know who gramps is, but at the end of the day she speaks about him all the time and he is security for her at nightime - so we felt we had to do something.
    The on call doctor took hours to arrive, when he finally did and tried to assess nan, she wasnt having any of it. She wouldnt co-operate at all as she insisted there was nothing at all wrong with her. I was spokesperson, and had to sit there and tell the GP the kind of things she had been doing - my nan was furious! She had no idea who I was, but insisted that I was a lier and that she was going to report me to the police - at one point she came right up in my face pointing her finger so close, I thought she was gonna poke my eye out! I felt terrible and did get a little tearful as she said the most horrible things to me and my mum - I know its the disease talking, but its just so hard not to get upset at times.
    Nan also got very aggressive with the doctor, when he told her he would like her to go to hospital to have some tests done she flatly refused, he managed to talk her round by telling her she would be able to prove to us that nothing was wrong if she went - she agreed then.
    The doctor arranged for an ambulance to come and pick her up - which I thought would be straight away - I was then told by the doctor that it could be anytime between 1 & 3 hours!
    GREAT! I thought, by the time the ambulance comes, nan will have forgotten the whole fiasco and we will have to repeat the whole terrible thing when the ambulance men come - which we did!
    For some reason though, when nan is asked questions by doctors etc - she immediately turns on me as the culprit every time now? She must remember me when shes angry? Not as her grandaughter obviousley, Im now the 'bitch' (1st time nan has ever swore in her life!) thats trying to kill her, get rid of her to steal her husband and have her put away. I only need to leave the room for about 5 mins after the confrontation has finished, and when I go back in she smiles and tells me how lovely I look ......bless her.
    Anyway, we managed to get her into the ambulance because for a split second she thought I was her sister - so I quickly played the role and told her she could trust me and I would go with her for a ride, the ambulance man told her he was giving her a ride home.......I felt so guilty.
    It had been a terribly stressfull day, all the confrontations with nan had mentally exhausted me and it had been a long day, by the time we got to the hospital it was 11.20pm!
    The ward we were taken to was a ward especially for over 65's suffering Dementia. Nan happily strolled down the corridor saying how nice the colours were, then we got to the ward.
    A nurse came to let us in and the ambulance men left.
    My mum and I stood there looking at eachother in panic. The ward smelled strongly of urine - it was sickening. The floors were dirty and the poor folk wandering around like lost sheep seemed far more advanced in their illness' than my nan was.
    A young nurse came over and showed us into a room to wait for the consultant. There was food all over the floor and the wallpaper had been ripped off the wall in big patches. My mum was in a state of panic and upset, saying 'I cant leave her here, Its horrible, I cant leave her here!'
    I had to agree, it was the most disgusting hospital ward I had ever seen in my life, I was trying to calm my mum down, but I too was getting upset.
    In the end I just couldnt contain myself any longer and I broke down (the stench of the place was making feel sick) I asked if there were any other wards - but was told that it was the only ward in our borough for my nans dementia. I apologised to the nurse and told her we were taking nan home.
    Nan was oblivious to what was going on and started to thank mum and I for giving her such a lovely day and how kind we are to her...........I think I cried for about 2 hrs.......the feelings of guilt were so bad.
    The day after, nan was fine and hadnt really noticed gramps wasnt there, we just said he'd be back soon and it was fine. I managed to arrange an appointment through one of the mental health team (Peter) to see the on-call psychiatrist the next day. He had read the notes about Sundays goings on and was very understanding, he agreed that the ward wasnt nice and suggested my mum and I write to our local MP to complain.
    Nan did as we had thought that night, and had mum my brother and my sister up till 4am - going into their bedrooms and ripping the sheets back to see if gramps was there - she was even outside in the garden calling for him, aswell as eating the dog/cat biscuits and feeding the animals food frozen solid out the freezer.
    We were grateful that we were finally having an assessment the morning after!
    Mum and I took her, and I sat in with the psychiatrist again to be the horrible one who tells lies. Nan had a fit again and I ended up leaving the room in the hope she would comunicate. She was in there for quite a while, when the psychiatrist called me back in he told me his findings.
    Nan has blockages at each side of her neck that have been restricting the flow of blood to the brain and causing clotting. Tiny clots have travelled to her brain and caused damage, I think this means nan has vascular dementia? Though Im not sure?

    Finally now we know what we are dealing with and are now just waiting for our doctor to refer her to the Cardiovascular unit in the Infirmary.

    Just wondered if any of you knew what treatment may be available for nan now and can we hope to see any improvement in the future??

    Thanx in advance

    Karyn x
  2. Sheila

    Sheila Registered User

    Oct 23, 2003
    West Sussex
    Dear Karyn, so sorry to hear how difficult things have been for you.Now at least, you have a diagnoses. My Mum had Vascular dementia too, she had terrific mood swings, violent episodes etc. It will not be an easy road, but they should be able to prescribe some medication to help. You need to let the proffessionals guide you and to sheild both your Nan and all of you who love her from some of the pain if you can. The medication may make her a bit sleepy at first till she gets used to it. It may also not always totally control it, especially the sundowning, but it will help. It will take a while to stabilise things and as you know, it never stays the same for long with dementia, but once they know how to treat her, then the medication can be adjusted to suite. I do hope things soon improve for you all, you've been through a very hard time, especially as you had to get your grandparents back from Spain and everything. We are here whenever you need to offload, thinking of you, love She.XX
  3. bjthink

    bjthink Guest

    Karyn, your nan's dementia is very similar to my mum's, and my mum has a mixed dementia which has more similarities to vascular ( the main one of the mixture) than AD (the other bit of the mixture). My mum is very delusional, paranoid, abusive and confrontational, just like your nan. Funnily enough, in her case, Aricept seems to help, and it's always evident when the carers have forgotten to give her that day's Aricept. I say 'funnily enough' because Aricept isn't supposed to work with vascular dementia.
    The psychiatrist also put her on Quetiepine which is an anti-psychotic, and which is supposed to help with the paranoid delusions, but she is still very difficult indeed.
    My heart bleeds for you and the family with that awful experience in the hospital. I'd been hoping that my mum could go to hospital to get the further tests done that she needs. Now I think it might be better for me to forget that idea! She is very non-cooperative, too, and is terrified of being 'put in a home' with people who 'wet themselves', and she would be beside herself with blind fury if she ended up in a hospital like that.
    I hope your nan now gets the help she needs. Have you got any input from Social Services?
    I wish you all the best.
  4. Katy44

    Katy44 Registered User

    Sep 14, 2004
    I've just found this thread and it completely describes my Grandma's situation, although my Grandma is maybe not quite at this stage yet but she's not far off.

    Karyn, I am so sorry you have had to go through all this. There is a feeling I have and I think you do too that there must be something I can do, someone I can contact, it can't go on like this. My Grandma is permanently confused and regularly paranoid aggresive and delusional. She fails to recognise her own husband (and thinks he is some sort of lodger) but still recognises her daughters and granddaughters (in fact when I phone her I don't even need to tell her who I am!). In her less confused moments she is caring and interested in other people and teases my Granddad in a good natured way (and he teases her back).

    We have been in the situation where she goes out walking late at night and refuses to listen to any reason. She won't accept help and won't see a doctor. We've been told that the only way forward is for her to either ask for help or be sectioned. Her greatest fear is being put into a home.

    I take some comfort in the fact that all these symptoms are common, and that hopefully after these episodes she forgets her distress. I wonder though whether she feels upset and scared, but can't quite remember / understand / explain why she feels like that. I think that would be worse.

    Sorry for this depressing post, but after reading your posts Karyn had to reply. Please update us on the situation at the moment.
  5. Karyn

    Karyn Registered User

    Jan 10, 2005
    Gt Manchester
    #25 Karyn, Feb 23, 2005
    Last edited: Feb 23, 2005
    Well, its been about a month since my last post, and a busy one at that!
    We ended up having to have Nan sectioned about 4 days after my last post, due to the fact that she had hit out at mum and was just completely paranoid and taking over mums house and everyones lives. She had been following my mum round the house all night, when mum went to go to the toilet, nan got up to follow her and mum lost it a bit and shouted at her saying, 'Are you going to follow me to the bloody toilet now too?!' She replied, 'Yes I am!' and when mum shut the door behind her Nan pulled it open with some force! mum went into the bathroom and nan busted her way in!......mum rang me later to tell me what had happened. That was when I decided to take the punge and ring the mental health team again - I didnt tell mum.
    I rang them that nite and got a call back around 11.30pm. I had a good chat with the lady, explaining everything, I didnt need to go into past issues as the lady said she had heard about my nans case and knew many details already. I explained to her that I wanted nan sectioned, as my mum wouldnt do it, and I felt that she was becoming a danger to others and she was so unpredictable! We just didnt have the capability to look after her anymore. I had booked my mum a doctors appointment, as I was worried that she wasnt coping well (despite what she said!), when she saw the doctor, the doctor booked her in for an ECG because her blood pressure was sky high!. Upon hearing this the lady agreed and assured me that someone would ring me in the morning.
    That morning I rang mum and told her what Id done, she was upset, but finally admitted to me that she was finding things a little too much to bear now, and the bathroom incident had topped it off for her too, as she said she had never seen my nan look at her in that way and nan had never ever laid a finger on her! I told mum that she had to realise that she was living with the disease now - not her mother, as I know full well that my nan would be mortified that she had hurt any of us - its a small blessing to know that she doesnt know what she did - for her sake.
    I waited at my house for the phone call - as it had become impossible for mum to use the phone at her house whilst nan was there and so all calls to and from doctors/mental health had been done from my home.
    I recieved a call from a guy called Kieth Knapton, he told me that he would be coming to visit nan today at around 3pm with a doctor and Psychiatrist - as you had to have 3 agreed signatures by proffessionals in order for the section to go ahead. Keith is the borough manager of the mental health team and its his job to go out to access patients for sectioning. I gave him my mobile number to use, to let us know when he would be arriving. After speaking to him, I got ready and went to my mums.
    My nan was quite calm when I got there, I nipped into the kitchen to tell my mum what was happening, then got mum to sit with nan so that I could explain the procedure to Gramps. Gramps was concerned, as he said she wont like being in hospital, she'll cry all the time. I felt so sorry for him, he doesnt really understand the disease. I tried to explain it by telling him that we were doing this for nan to help her as she has brain damage and we cannot look after her anymore, she needs professional help, I told him that the fact that nan cannot understand that she is ill and needs to go into hospital, shows how mentally ill she is. He understood, and agreed that he didnt know how to handle her anymore and that her aggression and violence was becoming a worry to him.
    Mum went upstairs to get a bag ready, and I sat in the living room with nan and gramps, I got gramps talking about war times cos I know that nan remembers these times vividly.....and it was so strange, because I sat and watched them chat together and laugh about old times for the first time in years! It was like nan was perfectly normal again! My eyes welled up with tears as I felt enormous guilt about what was going to happen at 3pm.
    As it was getting closer to 3pm, I felt sick, my heart was pounding. I got a call at around 10 past 3, Keith said he would be there with the doctor and psychiatrist in around 10 minutes. The psychiatrist was Dr Stein, who had seen nan the week before, so I was pleased that it was him and that he knew nans case, as he had seen her in action when we took her for the appointment and she told him I was trying to kill her!
    When they arrived they all sat down in the living room, mum was on pins and so I told her to go into the kitchen with Gramps and I would deal with it. Dr Stein inroduced himself to nan and asked her wether she remembered seieng him the week before - she didnt. Then they started to ask her questions about her health and she said the normal things - theres nothing wrong with me , Im in perfectly good health. When Keith tried to access her by asking simple routine questions like what was the year, date, day - she couldnt answer and started to get angry again and paranoid, she shouted at him saying.....'why the hell cant you just leave me alone, theres nothing wrong with me, I dont need to know these things cos theyre not important to me at my age' She then turned on me again, 'What have you been saying to these people!, youre trying to do something to me arnt you! I know you are, well you just wait cos Im going to report you to the authorities' Keith asked her why she would want to report her grandaughter to the authorities when all Im doing is trying to help her? She pointed at me and said, 'Her, my grandaughter! dont be stupid, she isnt my grandaughter, I dont even know this girl. My grandaughter wouldnt do these things to me. She is not my grandaughter! You are evil girl, plain evil! Dont you look at me with that sad face, its all an act youre a nasty person'
    After more questions and arguments and denial that she was ill, they all decided upon the section, the 2 doctors signed the papers and left. Keith stayed to explain to nan what was going to happen now. He told her that she had to be admitted to hospital and why and that because she wasnt willing to accept that she was ill, it had been decided by 3 professionals, and she must be taken to hospital asap. She point blank refused and so we had to call the police, they came quite promptly and tried their best, they didnt want to put nan into a van like a criminal and asked that an ambulance was arranged to take her with an officer to travel with her and a police escort. Mum was upset, I told her to give me nans bag and that she should stay home with gramps while I take Nan in to hospital with the authorities. They managed to get nan to co-operate, and told her they were taking her home.
    I followed the ambulance and police to the hospital in Keiths car. By the time we got there, the police were on the ward with nan, when the nurses opened the door for me, nan said hello to me and asked what am I doing here? I was no longer the evil girl, but a familiar face she recognised though she didnt know I was family.
    We were shown to the interview room where the hospitals psychiatrist doctor greeted us along with a mental health nurse who also worked on the dementia ward. We went through the same process of askin nan questions which she didnt know the answers to. When she was asked who I was she laughed and said, 'why, its my friend ive worked with her for yrs' when asked my name she turned to me and said, 'well, you know youre name dont you, silly question, she knows who she is, shes my friend' the doctor nodded at me to respond. I looked at nan and said to her, Im not your friend, Im your grandaughter, my name is Karen and Im 28 yrs old.' She scoffed, and denied it, I wasnt her grandaughter. I told her to look in her bag for her keys, as there are 2 pictures on her keyring - im on both of them. She muttered in disgust as she rifled through her handbag, then she pulled out her keys. I showed her the pictures and pointed myself out on them both, she screamed at me in denial, saying that it wasnt me on the pictures. She said if I was her grandaughter, I was a horrible one for putting her through this, and then turned to the doctors and told them not to believe a word I said cos I was barmy! and she didnt know who the hell I was cos no-one in her family would be so evil to her and she wanted to report me to the police. All the confrontational questions about her state of mind were making her aggressive and she started shouting at the doctor, the nurse went to get a member of staff to take nan for a cup of tea. I stayed with the doctor and discussed nans behaviour further and answered the questions he needed, to access her as a patient on the unit. When finished I was led back out to the corridoor. I asked a nurse where my nan was and she pointed to the day room, nan was sat at a table on her own fiddling with her handbag. The nurse said I could leave now and they would take over things - but I couldnt go without seeing her first, so I told the nurse I would be staying for 1/2 an hour.
    As I walked over nans face lit up, hello, she said, how are you. I asked her if she would like to sit with the others and watch 'The Bill' - she always liked that programme and used to watch it constantly on UKGold when she lived in Spain. I just sat there with her, holding her hand while she commented on the other patients and how it was a shame for them. When it was time for me to leave, I told her that I was just nipping to the toilet, and left the hospital.
    I broke down when I got outside - the guilt was over-whelming, and still is to this day.
    Nan has spent 4 weeks on the unit, and we have had ups and downs, it is especially worse when Gramps comes to visit her, as she thinks he's come to take her home. She has no idea where she is, as the doctors say that her brain doesnt have the capacity to take in the fact that she is in a hospital. She thinks shes on holiday, and has even forgotten living in Spain. Sometimes when gramps visits, she thinks he and mum are a couple and are her friends visiting her at her house - she offers them tea etc. Shes been aggressive with nurses and caused upset with other patients by going in their rooms and taking things cos she thinks its her house. The doctors told mum last week that we need to start looking for a residential care home for nan asap, or they are going to have to move her to a different unit - which is the unit we first took her to and brought her home cos it was that awfull. Nan is causing havoc on the ward and needs to be moved downstairs, so to save moving her a 3rd time, its best to get the care home arranged now.
    Mum and gramps have spent all week looking at different ones, and have both agreed on a place they think nan would like, she is still on the unit at present, but has been accepted at the care home and will be moving in as soon as all the paperwork is through.

    I will update you on her progress when shes moved in.

    Can I just say though, a big thank you to you all for your advice and support through this whole thing. Its been a godsend to have someone to let off steam to. This is a wonderful forum and very very useful.

    Thanx :)
  6. bjthink

    bjthink Guest

    Karyn, that's so sad! But please don't feel any guilt because as you so rightly told the family, your nan needs to be looked after, and needs to be safe - as do the other members of your family. You did the right thing absolutely, in protecting everyone, as you knew at the time, and you shouldn't lose sight of how brave and strong and loving you really are.
    With all my best wishes
  7. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Hi Karyn

    thanks so much for posting your story in detail. While it is of course very sad for everyone, you did just the right thing. That's the definition of courage - doing the right thing when it hurts so much, and when many other people would walk away from making it.

    Your description of the happenings is very familiar to some of us, but more importantly, it will help others who have not yet been there, people perhaps new to TP. Where we go or have been, others will follow, and if we can make their paths just a little easier by recounting our experiences, then that is important.

    I have found that the first few weeks are generally the worst when someone is taken from their home. After that, the new situation becomes the norm, if such a thing is possible for someone with dementia.

    Best wishes and take care of yourself, Mum and Gramps.
  8. thompsonsom

    thompsonsom Registered User

    Jul 4, 2004
    Hi Karyn

    You have been such a brave person to have done what you have done and don't ever let yourself think otherwise. It takes guts to do what you have done and it is not callous or unfeeling. Reading your thread i could relate so much to what you have been through with your gran as the same has been said with my mum in law. We have been lucky in getting the medication early on but did have a period of time when we didn't think we would make it and keep mum living with us. Things are settled now, for how long we don't know, we do have our off days and it causes a great strain within our family. My mum in law for some reason vents all her hatred to my 18 year old son who only has to be in the same room as her and she looks daggers at him, fortunatly at the moment he his out at work 10am to 10pm so they rarely meet and we go to our caravan at the weekends and he remains at home. He his thinking of changing jobs to a 9=5 job and I know then our problems will start again but we will cross that bridge when we come to it, as Norman says day to day.
    Give my best wishes to your family and keep us informed on how you get on.
    As Bruce says our experiences help others.

  9. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
    I admire you for the way you have acted throughout this trauma.
    I dread the thought of being in a similar situation and would wish I had some one like you for support.
    I hope things will be a little easier for all the family now.
    best wishes
  10. Katy44

    Katy44 Registered User

    Sep 14, 2004
    Karyn, your last post made me cry! I am so impressed that you have made things happen and done the right things for everyone. I hope your Mum is coping and getting treatment for her blood pressure, and I hope you are looking after yourself too.
  11. Sheila

    Sheila Registered User

    Oct 23, 2003
    West Sussex
    Dear Karyn, I know only too well the feelings you describe about seeing your Nan sat at the table twiddling her bag and all alone. I felt just the same when leaving my Mum for her first respite, went out side and bawled my eyes out. Take heart in the fact that she now thinks she is on holiday, could be worse, a holiday is a nice time after all. Do hope you soon have her settled in a permanent care home. Then you can give her quality time when you visit with little treats etc. Love to you all, She. XX
  12. Sheila

    Sheila Registered User

    Oct 23, 2003
    West Sussex
    Dear Jan, it is very hard trying to juggle family life around the needs of a dementia sufferer. My Mum used to sometimes charge into my son's room sometimes and have a right go at him and his friends, accusing them of all sorts. These same young men luckily all thought the world of her thank goodness and often turned out to help get her back when she went off on a walk about. As long as your son understands it is the illness not his Nan, he should weather the storm. Just try to keep him aware of what is happening so he feels included in any decisions etc, we did this with all immediate family and it not only helped us to cope, it brought us closer together too. Love She. XX

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