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  1. Frendz

    Frendz Registered User

    Aug 25, 2016
    Hi, this is my first post but I have been a reader of this forum since last year.

    My mum is 52 and she was diagnosed with early-onset FT dementia in 2012. She was originally diagnosed as schizophrenic in 2011. She has been generally well since her diagnosis but she has gradually forgotten how to do housework and has gradually lost her ability to communicate with us in the last 2 years or so. She is doubly incontinent and she does not recognise us anymore but smiles when we walk into the room. She can walk but struggles with her balance. Behaviour wise she has been great and easy to take care of.

    However, most recently for last 2 months she has been screaming and shouting literally all day every day. She used to shout out before but it would be few times a day which was bearable. This is just constant and it is getting really difficult to take care of her and be around her. Feeding her and washing her is much harder now. We don't know the trigger. It may be the warm UK weather but as she cannot communicate we are struggling to keep her calm and quiet. She does not take any medication for the dementia but recently a specialist doctor visited her and said to give her risperidone only when she gets really agitated. We gave her this same medication in 2013 and it caused her to have mini panic attacks (she would look into space with eyes wide open and breathe heavily for a good minute and then breathe a sigh of relief) but giving her water calmed her down and A&E said she was fine and nothing was wrong with her.

    Does risperidone calm the person and stop their shouting is what I want to know though? Anyone had similar issues and have other solutions we may try?

    Thanks in advance for the replies and you guys are absolute legends for the care and support you guys give on here and in your lives to your loved ones.
  2. HillyBilly

    HillyBilly Registered User

    Dec 21, 2015
    Just wanted to stop by and say hi - I can't offer you any advice on this particular situation but I just know that others will be able to, maybe the night owls of TP or some early birds.
    I wish you a peaceful night.
  3. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    Welcome to TP Frendz :)

    It sounds to me as though your mum needs something more permanent than the rispiridone as needed.
    Can you talk to the memory clinic or GP about what's happening?

    My dad is currently on a very low dose of rispiridone but it doesn't seem to be making any difference.
  4. Kjn

    Kjn Registered User

    Jul 27, 2013
    I would speak to the doctor who prescribed the rispirodone , my dad was very aggressive and was prescribed 1mg which did sedate him , he was on it about 7weeks until he was admitted to hospital. The Drs in the hospital have since removed that drug from him.
    It's getting the balance, maybe it's not working for her and needs something else. My dad has an array of calming meds tbh .
  5. Onlyme

    Onlyme Registered User

    Apr 5, 2010
    Mum was put on Respiradone when her screaming became every waking moment. As soon as she **** her eyes she screamed. If I spoke she would look at me and say she was fine but as soon as she closed her eyes it was back to screaming.

    She was reviewed every 3 months and was on it for 3 years. It was a balance between her life expectancy perhaps being made shorter by her taking it or her her life lengthened but living a continuous nightmare.
  6. Frendz

    Frendz Registered User

    Aug 25, 2016
    Thanks for the replies. The risperidone has not started yet but I do remember it making her very sleepy during the day. Quetiapine was also given which I think accelerated her dementia to an advanced stage very quickly.

    It's heartbreaking to see my mum deteriorate this quickly but the signs were there years ago. I am only in my 20s so I am worried as to how long this will continue. Last 2 years I have seen a dramatic decline. Doctors say they can't really do anymore and memory clinic are reviewing her but I just feel there is lack of awareness of this illness in the UK and more needs to be done. Just wish there was a cure. Would do anything to have my mum back.
  7. Jasmine123

    Jasmine123 Registered User

    Jan 22, 2014
    Hi Frendz

    My mother was on risperidone to calm her down. She was on this for a year and a half. It calmed her down massively. Every now and then she would go to a lower dose and then would be totally unmanageable. She was very active so if she was on a low dose she would just sprint across the road into on coming traffic and there would be nothing you could do about it. I know there are health risks to it, but when my mum wasn't on the drug I would not have been able to look after her as she would be uncontrollable. I think it is about weighing up what is important. it sounds like your mum is more advanced then my mother was when she was taking risperidone so not sure if it is a similar situation though. Once my mum became bed bound she came of the risperidone.
  8. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    Hi Frendz, welcome to TP
    My wife spent 6 months in a secure assessment and is now in an EMI home, all I can say is if they're is a cure for shouting then neither of them know what it is.
    The NHS assessment unit had everything; consultants, doctors, phychologists, psychiatrists, occupational therapist and more, there were people there who shouted when we got there and were still shouting 6 months later when we left.
    In the care home there are a couple of shouters but it seems they've developed the shouting after they became residents.
    So if there is a medication I've not seen any evidence of it being used.
    I've just spent 30 minutes feeding my wife (slow eater) with some one 6 feet away shouting the same thing over and over and it's like a form of torture so you and your family have my sympathy.
    I hope someone come along with something more positive.
  9. jorgieporgie

    jorgieporgie Registered User

    Mar 2, 2016
    Hi Frendz,
    My Mum is on a low dose of rispiredone for hallucinating and agitation, since she went on it five weeks ago it as calmed her down tremendously and no more hallucinating.
    The down side is I have seen such a deterioration in her and now she has stopped eating.
    The Gp said it could be side effects of the drug.
    But what else can you do its either see them disturbed or see them calm.
    I think meds work for some and not for others, but it sounds like your Mum needs something just to give her some peace as well as you.
    Good luck x
  10. Patricia Alice

    Patricia Alice Registered User

    Mar 2, 2015
    We have just as a family taken mum off rispiridone, she had been on it a year, but lately she had become very breathless and it did something to her vision that she would rub her eyes constantly and become more distressed by this.

    Since stopping it, her breathing has returned to normal and she is not rubbing her eyes, but her mood/agitation has now started again.

    You have got to weigh up the pros and cons. We may have to restart it again if her mood continues to slide.
  11. Frendz

    Frendz Registered User

    Aug 25, 2016
    Thank you for the replies.

    The respiridone will probably start next week when the GP is consulted by the dementia doctor. I will let you know how she gets on with it but I am not expecting any miracles.

    I think earplugs will do to soothe our eardrums for now. She is eating well and laughing and smiling when we do but it is difficult to keep it going when you have your own life to live.

    Funny thing is I was watching 'The Martian' with Matt Damon starring and he was wearing rather spacious helmet that kept saying "Pressure is now stable". For a moment I thought hmm... that could do nicely for my mum that helmet. She could breathe and we can't hear the screaming. Haha if only it was real.
  12. Frendz

    Frendz Registered User

    Aug 25, 2016
    The screaming is getting worse and much sharper. Finding it hard to even sit in the same room with my mum. How can she not lose her voice with this much screaming?

    Has anyone tried a pacifier or lollipop to treat the shouting? 12 hours of constant screaming is getting too much. I don't think medicines will work at this rate. Feeling sick myself and getting anxious everytime she screams. Want this to end asap.
  13. Onlyme

    Onlyme Registered User

    Apr 5, 2010
    It is so dreadful to listen to as we can't imagine the anguish of the person.

    Call the consultant, Dr or nurse as neither of you can continue like this.
  14. Lets_Stop_Time

    Lets_Stop_Time Registered User

    Aug 23, 2015
    I guess anything is worth a try? I believe respiridone made my MIL very out of it thus calming the screaming she was doing. She was a quiet screamer if that made sense like she wasn't using her full voice. But she would full on scream if she was being cleaned/personal care.
    What was your mum into in the past, anything that could possibly trigger a good memory. Have you tried music we find that was a very good calming sort of thing.

    Try lollipops, try anything as if something does help well that's good for your mum and you xxxx
  15. Haylett

    Haylett Registered User

    Feb 4, 2011
    Frendz - I don't know either, but am completely sympathetic. I have just come back to TP after a long absence to see if any TPers had a suggestion as to constant vocalisation and shouting at full pitch - and I found your post. For which I was grateful (i.e. not to be the only one!) but so sorry for you and your Mum.

    My MIL started shouting about 1.5 years ago. Before we could relate it to pain/discomfort (needing to go to the bathroom); frustration (no-one's taking any notice of me); tiredness. Pretty much the same pattern as a toddler. But her shouting now seems to be completely random. Thankfully, her medication has been and is still, minimal - lactulose and senna to keep digestion on track, and liquid paracetomol to deal with the usual aches and pains of a 94 year old. Last week, she had two abdominal bleeds but remained at home because the GP felt that she gets better care at home (as we all know, but how sad). The bleeding has stopped and she is eating again - we've consulted the GP as to the safety of giving the maximum paracetomol dose to address pain issues but..

    I actually bought a pair of ear defenders for us and our carers to wear if the shouting got too bad. But it does get to you. Sometimes, I feel as if my eyes were rolling in my sockets - my teenage boys, stoical and late teens are distressed by it at its worst - the dog hates it - it must be dreadful for my MIL but she doesn't screw up her face, she often smiles in between the shouts - and I would be loathe to give her anything that made the dementia worse. She doesn't appear to be suffering - it's just us....
  16. Haylett

    Haylett Registered User

    Feb 4, 2011
    Sorry - I forgot to say that I wondered about small lollies too. My MIL is peg-fed so it's a little different, but we do freshen her mouth with sponge sticks soaked in water, or 2/3 water and 1/3 pineapple juice (there is supposed to be an enzyme action with pineapple juice that cleanses the mouth).

    The only thing that I've had any success with at all is trying to get her to blow. I sometimes blew on her fingers and it used to make her laugh. And just in the way that blowing sometimes can help to control pain, I hoped that it might have a double function - alleviating pain and stopping the shouting!

    Probably MIL would discover that she can do digeridoo breathing - and blow and shout at the same time! Murphy's Law...
  17. LindyD

    LindyD New member

    May 17, 2019
  18. LindyD

    LindyD New member

    May 17, 2019
    My mom has vascular dementia but more recently became angry and violent very rapidly. Mental health team diagnosed paranoia and psychosis. She was presxribed Rispiredone and calmed down immediately. She sometimes seems too spaced out and vacant but she is no longer amgry and sad. She also sleeps all night so is no longer froghtened by her imaginery sightings.
  19. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    hi @LindyD
    it's good that your mum is much calmer

    just to say that this is an old thread from 2016

    so is now closed
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