1. tryingmybest

    tryingmybest Registered User

    May 22, 2015
    616
    Female
    No Mum was on Amitriptiline anti depressent but it didn't work so is now on.Mitrazapine. I understood that Risperadone only helps pwds with Alzheimers? Mum has late stage Vascular Dementia.
     
  2. 70smand

    70smand Registered User

    Dec 4, 2011
    257
    Female
    Essex
    I really feel for what you are going through- slightly similar to my dad when he was at home with mum. He used to get very agitated at times, and others he was lovely. Sometimes mum would despair and I would come and be able to distract him from his agitation when he got really bad, but that did stop working. For a while the occasional lorazepam used to help when we could feel his agitation rising, and used to calm him, a bit like resetting a clock. However, the agitation increased and we were giving lorazepam more frequently with little effect. We were in constant contact with his consultant from the elderly mental health team. I was surprised his consultant prescribed night sedation for dad, knowing how it’s generally not recommended for dementia, but it definitely helped. He was generally fit and well at 69 and never had any falls and my mum felt she coped better with the days shenanigans with a nights sleep.
    My dad ended up on antipsychotic medication. The first drug made him very ill, as everyone reacts differently to drugs and I know they are generally a last resort. The next drug did improve his mood, but he also had some awful side effects - I have very mixed feelings about medication and their side effects and once my dad went in to hospital, we had no say as a family about his meds. I wish we had been offered the chance to try some others whilst at home where we could monitor his side effects and report back to the Dr.
    When things get so bad I do feel there is a place for medication, with careful monitoring, as everyone responds differently to medication and what works well with one person doesn’t always work with another. It’s so hard to see a loved one constantly agitated and must be so upsetting for them to be that way.
    You really do sound like you need some help though but I understand your reluctance for hospital, but would you consider respite? It might give you some time to at least sleep and get some help occupy your mum with others or at least distract your mum from becoming so agitated.
    I wish you the very best x
     
  3. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    16,012
    Toronto, Canada
    @tryingmybest the problem with lorazepam is that it's addictive, so it should only be used occasionally. My mother was prescribed anti-psychotics because of her extreme behaviour and mood. She was first given risperidone, which she was on for a couple of years. It worked well in subduing her violence, aggression and agitation. She started developing Parkinsonian syndrome so we had to switch her to olanzapine. Then we switched again a few years later because of weight gain. The last one she was on was quetiapine. Eventually, as her disease progressed, we were able to reduce her behavioural meds to nothing.

    I've made it sound rather simple but it was actually a lot of toing and froing. I tried to keep a sharp eye on Mum and there were times when I strongly argued about her meds because I felt she was over-medicated. I was also the person responsible for gradually weaning her off meds when I felt they were no longer necessary. By responsible, I mean hounding the doctor until he agreed with me. Squeaky wheel gets the grease.

    In our case, it was very clear cut as Mum's behaviour was dangerous to others. We didn't really have much of a choice. But the drugs did make a difference to her, and not just that she wasn't violent and aggressive. She became calmer and seemed to enjoy life more. That is what was most important to me.
     
  4. tryingmybest

    tryingmybest Registered User

    May 22, 2015
    616
    Female
    Thank you for your response. It's just so upsetting to see ones loved one in such a state isn't it?. If it was occasional it wouldnt be so bad but day in day out is exhausting for both the pwd and the carer as there's no let up and no escape route! Lorazapam is now no longer available to Mum now shes on Mitrazapine as they dont react well together although I've only given the Lorazapam to her a couple of times at night when it became unbearable. It did work. I just feel there's nowhere to turn for help as both the doctor and the Neighbourhood Team said we must wait a few weeks for the Mitrazapine to work.
     
  5. tryingmybest

    tryingmybest Registered User

    May 22, 2015
    616
    Female
    I only used the Lorazapam a couple of times at night as it was all so unbearable and it certainly worked but now Mums on Mitrazapine she's not allowed it so I feel as though Im left without a safety net I guess. The three drugs you mention that were tried for your Mum are only for Alzheimers, not Vascular Dementia so it seems there's nothing available to help and I've just got get a grip and get on with what hopefully is a phase.
     
  6. canary

    canary Registered User

    Feb 25, 2014
    9,623
    Female
    South coast
    No, thats not true.

    The drugs that are only for Alzheimers are things like donepezil which are used to slow down the progression of Alzheimers - there is nothing which will slow down the progression of vascular dementia, but the symptoms of things like depression, agitation and aggression can still be treated. Antipsychotics (like the ones Canadian Joanne mentioned) can be used for any sort of dementia.
     
  7. tryingmybest

    tryingmybest Registered User

    May 22, 2015
    616
    Female
    I think in my experience, GPs and the general hospital doctors and nurses weve seen on being admitted to hospital are very un dementia aware. I have been told so many things I don't know what to believe anymore!! Mums certainly not requiring antipsychotic drugs as she's not, just very very distressed and tearful all the time and I truly don't know what to do and nor do the medics. I'm just not sure how I can keep going on like this day after day as it's making me so miserable and my BP is sky high which it wasn't before. I just want something to keep Mum calm, which seems too much to ask. It's a shame we have never had access to a consultant via a menory clinic or a dementia nurse or anyone like everybody else seems to. A psychiatrist was sent from the CoP to determine capacity and said Mum hadn't and that old medical notes from when she lived in Scotland revealed she had small vessel disease so he said she must have Vascular Dementia!!
     
  8. charlie10

    charlie10 Registered User

    Dec 20, 2018
    276
    " Mums certainly not requiring antipsychotic drugs as she's not, just very very distressed and tearful all the time"

    Did you know that drugs are also used 'off-label'.....

    "Some antipsychotics may also be used to treat:

    • severe anxiety (but only in very low doses)
    • physical problems, such as persistent hiccups, problems with balance and nausea (feeling sick)" taken from MIND website. "
    so giving someone these drugs doesn't necessarily mean she's psychotic. Maybe you could ask the doctor about a mild antidepressant such as citalopram? Sorry if I'm doubling up on advice, bit in a rush....I understand your worry, it's so hard to get a straight answer on anything, but I think that's possibly cos of the nature of the disease, which is so unpredictable and can turn on a dime. Hope you manage to get some answers you're comfortable with
     
  9. canary

    canary Registered User

    Feb 25, 2014
    9,623
    Female
    South coast
    Actually, this could, indeed, be a symptom of psychosis.

    If your mum is only being treated by the GP, could you make a nuisance of your self and get the GP to refer her to the Community Psychiatric Team? They are often involved in treating dementia patients and have a much better understanding of the drugs than GPs. Be that squeaky wheel that gets oiled!
     
  10. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    2,668
    Nottinghamshire
    I agree that GPs and the like are generally not experts in dementia @tryingmybest. As canary has said you need to insist on an urgent referral to the mental health team. My dad was sent a CPN (community psychiatric nurse) when we were having problems coping at home and his situation was not as bad as yours and your mum’s.

    A mental health specialist should be far better placed to help. They only have one specialist area to deal with so should have much more knowledge than a GP could possibly acquire.

    It sounds as though you’ll need to be prepared to fight to get what you need so be prepared to put your foot down - nicely!
     
  11. tryingmybest

    tryingmybest Registered User

    May 22, 2015
    616
    Female
    #31 tryingmybest, Apr 11, 2019
    Last edited: Apr 11, 2019
    Thank you. I didn't know that. I will ask the GP although it seems the side effects can be really bad on them. Mum was on Amitriptiline as the doctor thought she was depressed but it hasnt worked so she's now in Mirtazapine. Im hoping that will help but its early days yet.
     
  12. tryingmybest

    tryingmybest Registered User

    May 22, 2015
    616
    Female
    #32 tryingmybest, Apr 11, 2019
    Last edited: Apr 11, 2019
    The past 4 weeks a lady from the Neighbourhood Team has been to see Mum and I. I believe they are a sort of community mental health team. It is she who suggested Mirtazapine instead of Amitriptiline but as shes only just been put on it this week its a waiting game.
     
  13. tryingmybest

    tryingmybest Registered User

    May 22, 2015
    616
    Female
    #33 tryingmybest, Apr 11, 2019
    Last edited: Apr 11, 2019
    Yes the GP admits hes only a generalist so doesnt have any answers. Back in January when Mum was admitted to hospital I made a fuss and asked for help so I could keep Mum at home with me and was very insistent it was time after 4 years we had expert help. Weve never had any and been left off the radar maybe as we live so remote in an area that seems to have nothing for those suffering with dementia. For the past 4 weeks a lady has come out from the Neighbourhood Team, she's not a nurse or doctor but it is she who recommended Mirtazapine to see if that helped. That is all both she or the GP could think of trying although the GP wasnt keen as Mum had a bad reaction to it 2 years ago. The lady said to try just 7.5mg but when the suggested dose for depression is 30mg (and I've read on TP some take 45mg) I'm concerned it won't make a difference. I've been told to wait and see but how much longer can I carry on?
     
  14. tryingmybest

    tryingmybest Registered User

    May 22, 2015
    616
    Female
    Incidently, I did contact the Crisis Response Mental Health Team back in January. Two very nice ladies who said they would be back the following week after giving it some thought. They then cancelled and said they couldn't think of anything to help so never retured!!!! Can you see how frustrated and let down I feel? Everywhere I've tried comes to nothing. I phoned the Neighbourhood Team yesterday afternoon and must admit I got so upset as couldn't get hold of the lady who has been to see Mum recently so they got the duty nurse to call. I told her exactly how bad it is but she just told me to hope the Mirtazapine will work but also asked me if I usually got so upset and perhaps it was me who was the problem not Mum!!!! I'm normally very calm and easy going but when you get told that....well words fail me. No wonder my BP has suddenly become so high!
     
  15. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,896
    Kent
    Hello @tryingmybest

    I found with my husband none of the drugs you mentioned solved our problems they simply numbed them a little. He was tried with Trazadone and Mirtazapine and their effect was minimal.

    I must say I did get more support from the Mental Health Team than you seem to be getting but I suppose that depends on the so called post code lottery and I`m sure support and provision were better in our day.
    I`m talking about 10 years ago.

    However poor the provision I do feel it`s unacceptable for anyone to tell you you are the problem I find that most offensive on your behalf.

    Are you ready to consider residential care for your mother? I`m afraid it`s what I had to decide on in the end and I hung on until I was as desperate as you sound.

    It turned out to be the best decision I could have made.
     
  16. tryingmybest

    tryingmybest Registered User

    May 22, 2015
    616
    Female
    Thank you for your response Grannie G. Yes it's certainly a postcode lottery isn't it as regards what is available and our area is extremely poorly served.

    Yes, the comment made to me by the duty nurse was certainly unhelpful and offensive. I do admit I was very upset at the time but there was no need to be so cruel and for her to say such a thing.

    Regarding residential care no, I could not do that. I fought so hard to keep my Mum with me in a very contentious and long drawn out case in London with the Court of Protection and I am determined to see this through to the end. Besides, any changes would have to go back to the court, and I would not have the strength to go through it all again, fighting a sibling and her cronies who emotionally and financially abused Mum when her partner died, and then told the most outrageous lies about me in court to justify what they did. Thank goodness the Judge saw through it all. I am really protective of my Mum and will do my best to keep her here with me despite how challenging her behaviour is becoming.
     
  17. 70smand

    70smand Registered User

    Dec 4, 2011
    257
    Female
    Essex
    #37 70smand, Apr 14, 2019
    Last edited: Apr 14, 2019
    Just catching up and I think I had a very similar experience to you @Canadian Joanne, where I knew my dad needed medication, but once on them it was a fight not to have the gp keep upping the dose after any minor thing, and trying to get them reduced, when he had so many side effects and we felt they were no longer needed was a battle in itself!
    @tryingmybest I remember screaming at a duty social worker on call for help over the phone one weekend as my dad was trying to throw the tv through the window. I must have sounded like the irrational one but I was at my wits end and was told to call back on Monday when dad’s actual social worker was in! We ended up calling the police as a last resort, which is not ideal but they were always excellent and their presence always helped.
    The lack of empathy and help is pitiful. I ended up videoing my dad having ‘a turn’ because whenever anyone visited he would be on his best behaviour and only then was I listened to after making a nuisance of myself ringing anyone I could for help. In the end a psychiatric nurse and social worker came together and between us we convinced dad to go to a psychiatric hospital. That’s where we handed over dads care and no longer had any say in anything despite my mum and I visiting him daily in shifts for hours. As much as I know he needed them, he was treated very heavy handedly with medication. I wish we could have been offered the anti psychotic medication to try at home with a lower dose in the first place, where we could monitor it and feed back to the Dr.
    As far as I am aware antipsychotic meds can be given to people with vascular dementia, but all meds should be given with caution and each person can react differently. The agitation you describe does sound like it may at least be worth considering some other solution, other than ‘try this for a few weeks, get on with it, and see’!
    I am so sorry for what you are going through and completely understand why you want to keep your mum at home. Best wishes xx
     
  18. tryingmybest

    tryingmybest Registered User

    May 22, 2015
    616
    Female
    Thanks for your reply and I'm so sorry you had such a terrible time. It's not surprising we end up getting upset and screaming at these people, as we are pushed to our limits at times and there seems to be no place to turn and we are dealing with people who have never actually had to do what we do with so how can they possibly know?

    Interesting, as I have thought about videoing Mum as, like you say, when anyone comes, the host/hostess kicks in and our loved ones appear to be relatively normal, making us out to be liars and over reacting!!

    I am however pleased to update and say that a week on from going on Mirtazapine, Mum is sleeping better and very slightly better in the day. Let's hope it continues and I can keep going. Best wishes to you too. X

    Ps. How do you do the highlighted @name thingy??
     
  19. Doggy86*

    Doggy86* Registered User

    Sep 2, 2018
    48
    Islington
     
  20. Doggy86*

    Doggy86* Registered User

    Sep 2, 2018
    48
    Islington
    Hi

    I just read and really feel for you, I understand why you want to look after your Mum at home as we do the same, but you really do need help, you need a proper accessment done on your Mum to see if they can calm her down, my Mum was offered Olanzapine for aggressive behaviour, we did not use it but people who have used it on their loved ones say it helps, but I have read a low does is the best.
    she might need something for depression as well.

    I really hope you get help, try the dementia support line as well that someone gave you in a previous post.

    let us know how you get on. Sending you a hug
     

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