Discussion in 'ARCHIVE FORUM: Support discussions' started by BeckyJan, May 23, 2008.

  1. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    Hello all:

    I would welcome comments about hallucinations/delusions.

    It seems like problems are mounting with David. We cut back medication a week ago as we thought they were zonking him out too much and not so beneficial.

    Now, and even before that change to a lesser degree, I am finding he is hallucinating during the night - every 1 or 2 hrs.

    Such as: looking for the cutlery to eat my lunch with (?1.00 am) Get off the bed Anne - our daughter aged 30. There is someone in the room, put the light on! Where am I? I am getting up to get my breakfast (3.00 am). Have you got the dog in (no dog now for 2 yrs.). Searching in the bed, I have lost the telephone.

    I have asked the Doc to phone me today (anticipating little help over a bank holiday weekend).

    I would love to hear what medication people have had for this sort of problem (if any meds at all).

    Thanks Best wishes Jan
  2. TinaT

    TinaT Registered User

    Sep 27, 2006
    I can't remember the amounts of Ken's medication but he is on Lorazapam, trazadone and Rivastigmine. This is carefully monitored by both his GP and the Hospital Consultant. The medication does calm him down when he is in a state of anxiety.

    He imagines many things, especially when he gets into his anxiety periods. He also tries to pick things up which are not there, and often imagines he has something in his hands which he holds carefully - but nothing is there. He clutches pieces of his clothing and cannot be persuaded to let go at times. He was quite convinced the other day that our eldest son had been to the home and had lunch with him. I explained that our son was, at this moment,in America but he still insisted that they had lunch together. This is just one example out of many that I could relate.

    I don't always try to dissuade him from his 'imaginings' as on the whole they are not harmful and he does seem quite content with making up his own world sometimes. When Ken was with me 24/7 I did find them very hard to ignore and I do sympathise with you. It is exhausting to be kept awake at night by these things, especially when you can't calm the person down or persuade them that there is nothing for them to worry about. At 'sundowning' from early evening to late evening, they also got worse and were extremely difficult to cope with. I found the mental strain of this was much harder for me to handle than the 24/7 physical caring for him.

    He was originally put onto medication because of the above behavour and as I've said in threads before, his life would be a complete misery without this medication.

    So, although the medication does keep his hallucinations/imaginings 'dampened down', it does not eliminate these.

  3. Margarita

    Margarita Registered User

    Feb 17, 2006
    My mother use to wake me up also asking for breakfast 3 0r 4 am, wondering around changing the furniture around, wondering where my father was ( he pass way ) only medication my mother was given was late stages medication for AZ as I never new back then they was a medication that could of been given for it .

    Sorry am not being at all help full
  4. Petra

    Petra Registered User

    May 23, 2008
    Hallucinations/Delustions - meds

    My Dad was diagnosed with vascular dementia at the end of April. He hallucinates and then gets delusional. He thinks that most of the time my mother is a man and is often asking her name. He then starts seeing a lot of men in the house and becomes very agitated, the consultant prescribed him quetiapine. He is only on 50mg a day, it's a tranquiliser and just makes him sleepy. Sometimes I don't know what is worse, the agitation or the sleepyness.

    Good luck with your GP, hope he's better than my Dads!

  5. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    Thank you for your prompt replies.

    I had telephone conversation with GP who suggests that I do nothing for another couple of nights :eek: (so tired now!).

    BUT he did say there was nothing wrong with giving him Promazine
    if I thought it would help!! I have a supply of these from the hospital - our other GP felt they were zonking him out too much.

    I will take note of all the drugs you have mentioned. The trouble is our Mental Health team and Consultant are barely evident - overworked I think and we come low on priorities.
    I do appreciate your posts.
    Best wishes Jan
  6. LizzieS

    LizzieS Registered User

    May 25, 2008
    My Mum was hallucinating a lot last year. I got an appointment with the local CPU via her GP and I have to say my experience of them is not good. If I'm generous, I'd say they are underfunded and understaffed. :(

    At the time Mum was waiting for cataract operations and the psychiatrist refused to do anything until her those had been done. His explanation was that she was probably seeing shadows. What bunkum. Her eyesight was never that bad but he wouldn't listen to me. Mum had to wait for another 5 months for a second appointment and the results of the memory tests were much worse than at the first appointment. She was prescribed Aricept and things have improved considerably and she raraely hallucinates at present. The CPU service hasn't improved - I had an appointment for my Mum to be reassessed 6 months ago but when I arrived I was told it had been cancelled. Now, as I'm sure you're all aware, it takes time and effort to get an old lady with dementia ready for an appointment and I do think they could have contacted me to tell me. I rang about half a dozen times to make another appointment but no-one ever returned my calls. I'm still getting repaeat prescriptions from them for about a year now - and I was told they would only prescribe for 6 months and then my Mum's GP practice would foot the bill. :eek:

    Has your Dad had a urinary infection because that is a common reason for hallucinations? It may be worth checking.
  7. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    Hello Lizzie:

    Thank you for your post. It is my hubby, actually, who I am caring for. No, he does not have a UTI although with a catheter now it is something I have to keep an eye one. I truly think these delusions/hallucinations are more to do with his Alz.

    Having said that this morning he awoke very dizzy and disorientated - ? a mini stroke, who knows! He is reasonable now so time will tell.

    I had another bad night of strange behaviour - this time more to do with sense of feeling - said he could not feel anything, not even the pipes (what pipes I ask :confused:).

    I think his GP needs to review his medication yet again.
    Best wishes Jan
  8. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Hello Jan.

    Just sending a strong arm and sympathy to you.

    Dhiren often woke dizzy and disorientated and his talk seemed to be of his dreams.

    And of course he had the master of delusions, thinking I was an intruder.

    We still don`t know whether or not the cause is an infection so it remains to be seen.

    But at least I got a full night`s sleep.

    Since David`s discharge from hospital have any arrangements been made to monitor his condition now he`s home?

    I do hope something can be sorted for both your sakes.

    Love xx
  9. KenC

    KenC Registered User

    Mar 24, 2006
    Co Durham
    Hi Jan,

    Since I have been on Exelon all my hallucinations have gone. I still have accassional nightmares but life is a lot better than it was before the medication.
    We are all different and I suppose it is all down to your GP or Consultant.
    Best Wishes

  10. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    Thanks Sylvia:

    You make me feel more comfortable now you mention that Dhiren often had this. This morning's dizziness, slurred speech and weakness seemed more like a possible mini stroke - but time will tell.

    I do not think there is any monitoring. The only people who record anything are the am carers who wash and dress (wonderful team). The SW is only paying lip service to helping. Even the day care promised seems to be doubtful now. No mention of respite which was also a 'condition' of return home. I am going to chase all this tomorrow when working life may return to normal.

    I am fairly certain the delusion/hallucination thing is to do with Alz./Mixed Dementia.

    I read your post about the weariness and emotional strain of constant visiting. I remember that well but at least you can sleep at night knowing Dhiren is well looked after.

    Love Jan
  11. brianpenny

    brianpenny Registered User

    May 26, 2008
    Hallucinations - Advice Requested

    Hi everyone. We are new subscribers as an elderly mother last week started to have vivid hallucinations at nightime which seem to be getting worse each night. In desperation we turned to the Net, found this site & realised that there are others in our situation. We previously contacted Social Services who offered to carry out an initial assessment over the phone, with our Mother`s consent but how do you get someone to consent to something they do not understand or, if they do understand, is not likely to acknowledge it?
    The GP visited once last week & is referring mother to a psychiatric consultant (no more details known yet) but with no indication when that may be.
    In the meantime, we are receiving phone calls during the night (mother lives 25 miles away in a Sheltered bungalow) & when we visit, she cannot stop talking about her "visitors" & the frightening experiences that she says occurred during the previous night.
    Her condition is probably not helped by the fact that she seems to have stopped heating up the microwaveable meals that we arrange to have delivered weekly. We are now going over to Meals on Wheels & have arranged for a private carer to visit twice per week (partly paid for by Attendance Allowance).
    We have seen references to "Professional Help" on other sites but we do not know how to access that. Does anyone have any advice please?


    Penny & Brian
  12. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    Hello Penny and Brian:

    You have quite a problem! I can only advise that you chase and chase and chase again, the GP and the Phys. Consultant. If you do not make loud noises you just take place in the queue.

    You will also find here on TP there is a recommendation that you keep a diary of events - and dont hesitate to let the consultant have a copy of it.

    Not sure what you would call professional help except that of the Mental Health Team. Try to find an Alzheimers Society Group near your Mother's address - from there you should get all the local information.

    If you do not get help through this thread, then I suggest you post a new thread with a question - from that you should get the benefit of direct replies.

    Hope I have not rambled too much.

    Good luck. Jan
  13. CraigC

    CraigC Registered User

    Mar 21, 2003
    Hi Penny/Brian and welcome to Talking Point!

    I think the first step is and assesment so Jan is absolutely right, you need to hassle the GP to get this moving.

    Check out the following factsheets if you have not already:

    Diagnosis and assessment

    Community care assessment

    My dad had very convincing hallucinations/delusions early on and I can imagine they would have been more frightening had he lived on his own.

    Good luck and keep posting
  14. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    Hello Ken:

    I think we posted around the same time so I have only just caught up with your message

    None of our medics have mentioned exelon!! -- not sure why.
    If David's hallucinations continue I will mention it - I do value your comment as obviously you have very first hand knowledge.

    I have had a difficult 2 weeks but last night we both slept through!!! :) I do feel better now. :)

    Love to all Jan
  15. brianpenny

    brianpenny Registered User

    May 26, 2008

    Thanks BeckyJan & Craig for your replies.

    What a week we have had. Mother`s hallucinations became worse to the point where she was seeing big black insects coming out of the floor of her bungalow & eating at her. 1 evening we could not get a reply when phoning her. After quite a few attempts, she replied but was almost incoherent, before the line went dead. Brian rushed over & found mother cowering behind the door, terrified & clutching an assortment of strange objects including the phone which was stretched out through the house with the extensionlead unplugged. We brought her back to our house & next day she was v. poorly - could not walk, eat, dress, etc. We eventually visited her GP who prescribed tablets to be taken when mother became agitated.

    There then followed farcical exchanges with mother`s local Social Services Dept who said that as she was now staying at our house in another Borough, we should register her with our own GP & get our Social Services to assessher & provide help. After a few "words" they admitted it came down to budgets & getting another Authority to meet the costs.

    As Social Services refused to assess Mother until the Psychogeriatrician had assessed her, we contacted his Secretary at the Hospital. She was fiersome & told us that if Mother was so ill, we should take her to A&E at the Hospital & they would admit her. We refused because Mother is v. frightened of Hospitals. We followed your advice by writing a diary of events & kept pestering Socl. Servs. & the psychogeriatrician (PG) , then out of the blue the PG said he would see Mother. We drove her 25 miles to his Clinic where his Registrar took 2.5 hours to thoroughly assess her & put our diary on his file . The PG`s diagnosis was that Mother had had some mini-strokes & that her memory is deteriorating. He gave her 3 lots of medication & told Socl. Servs. to get an Emergency Support Package in place. Success after about 4 months of trying, but it took mini-strokes & persistence on our part to get any response.

    It never rains but it pours - about 6 months ago we booked a foreign holiday, starting next week. We are shattered after only a few weeks & even the Consultant said we had done well to get through the system. Luckily mother-in-law (who is 83 & v. active & alert) is going to stay with Mother while we are away & we will be meeting the Socl Servs Manager(!) on Monday morning at Mother`s to formulate a long-term care package to start when we return.

    Mother still associates her bungalow with strange people, insects, etc but hopefully the combination of short-term company from someone of her own age & medication will help a lot.

    Thanks again for your advice & hope things are improving for you.

  16. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    Hello Brian and Penny:

    What a time you have had and well done for getting through the services - not an easy task when there are massive problems to handle.

    I do hope all works well from now and most of all I hope you manage a good holiday.

    Best wishes Jan

    PS Our life seems to have settled somewhat - more sleep now and more outside help. Thanks Jan
  17. ishard

    ishard Registered User

    Jul 10, 2007
    #17 ishard, Jun 1, 2008
    Last edited: Jun 1, 2008
    Quitapine is not just a sedative it is an anti psychotic which helps with delusions, it has a mild sedative effect and a good side effect for most AZ patients is the weight gain it can cause.

    If you have reduced the dosage of this med without asking the doctors advice and your loved one gets delusional then put them back on it. Thats probably what they were on it for in the first place.
  18. CraigC

    CraigC Registered User

    Mar 21, 2003
    I'm not sure about that. It depends what you call mild. Since dad has been taken of quetiapine he is much more alert and less sleepy. Sometimes it was impossible to wake dad up while on quetiapine and he seemed in a complete daze. In dads case his appetite remained the same when on quetiapine or off the drug. It may be an appetite inducer (that is new to me), but there are safer appetite inducers available.

    Think it depends on the dose and the individual.

    I do agree that you need medical advice before changing a dosage of any prescription medication.

    Kind Regards
  19. ishard

    ishard Registered User

    Jul 10, 2007
    Craig quitapine isnt an appetite inducer, how it works to weight gain is that the patients metabolism slows down hence the weight gain, the calories are just not being used.
    This med lowers blood pressure too, sometimes too much and so the patient has to be monitored for the first couple of weeks in case it 'bottoms out' and causes collapse.

    Yes I agree some patients can be more sleepy on the med but 'officially' its only a mild sedative. Perhaps these patients would have been sleepy on any sedative med due to their metabolism?

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