1. Our next Q&A session is on the topic of Christmas and dementia.This time we want our Q&A to involve our resident experts, you! Share tips and advice on navigating Christmas here in this thread.

    Pop by and post your questions or if you prefer you can email your question to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.
  1. Cole_H

    Cole_H Registered User

    Oct 3, 2012
    40
    Hi,

    My mum was diagnosed about 3 years ago and put on Aricept and doing well on it. But in the last couple of weeks she has deteriated dramatically. Stopped doing crosswords, aggressive towards me, thinks the tv and photos can see her.

    She is also not sleeping.

    Now she did have a urine infection a few weeks ago but since then culture tests done by the hospital suggest this has gone. She was on three rounds of antibiotics.

    I ended up purchasing the Siemens urine dip strips and these indicate a high level of leukocytes in the urine which I thought indicated infection.

    I have tested it on myself and all fine so the strips appear to be working.

    The doctors won't prescribe antibiotics now, understandbly as they might not be the right ones or something else is going on.

    I have not slept for two weeks, sleeping pills seem to make her worse.

    I am now at my wits end and struggling with how nasty she is being to me. It's so awful, if she only knew what she was doing she would be mortified.

    It seems to kick in late in the evening, her eyes suddenly bulge. It's like the hulk :) Although today it's happening this morning, I know it's coming and as a result I'm on edge the whole time and feeling deeply depressed, worryingly so.

    I don't know what else to do. I'm normally really resilient but totally struggling with the inability to apply logic with her.
     
  2. nitram

    nitram Registered User

    Apr 6, 2011
    19,277
    Male
    North Manchester
    "...these indicate a high level of leukocytes in the urine which I thought indicated infection..."

    Leukocytes can also be caused by >>>interstitial cystitis<<< or kidney stones neither of which in themselves will cause a positive culture. They can cause pain which might account for aggression etc. especially if she is unable to describe the pain.
     
  3. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,731
    Sounds as though she is in pain and can't explain where or how or where it hurts. I would get straight back onto the docs and tell them that you need an emergency appointment today and if they won't help then call 111. You can't manage and neither can she when there is clearly a problem - you will both exhaust yourselves .

    Meanwhile can you get her to drink a lot?

    Let us know how you get on.
     
  4. Sue J

    Sue J Registered User

    Dec 9, 2009
    8,035
    I agree she must be seen again by the Drs the priority must be to get her pain under control and treat any underlying infection. Try to keep her quiet as possible and help her to drink and get her to eat if she feels able. A cold/warm flannel on the face regularly can be soothing when the pain is originating in the head.

    The three rounds of antibiotics may have aggravated things if they were not for the right infection. A culture and sensitivity test should be done BEFORE anything further is prescribed.

    I hope things settle for you both very soon.
    Best wishes
    Sue:)
     
  5. Cole_H

    Cole_H Registered User

    Oct 3, 2012
    40
    Thanks for the replies. The doctor has put her on another course of antibiotics due to the strips showing an infection.

    Today she is off the scale - threatened to pay someone to stab me and spent the afternoon talking to a photo.

    Two weeks ago she was fine.

    Thanks for the thoughts about pain, oddly she also wrote a letter today where she mentioned pain in her tummy. This was her list for the doctor so I think is also rather constipated which I will address.

    Today also may have been a reaction to the sleeping pill, not seen her so out there before.

    I'm actually exhausted, she has been going strong now for 24 hours.
     
  6. Sue J

    Sue J Registered User

    Dec 9, 2009
    8,035
    A warm wheatbag on her tummy may help both the discomfort be it from bladder or bowel problems and may help the constipation too.

    Hope the antibiotic kicks in and works very soon for you both.
    Take carexx
     
  7. Cole_H

    Cole_H Registered User

    Oct 3, 2012
    40
    Well it's now 3.30am and she is still going. So now it must be 30 or more hours without sleep. How is that possible?
     
  8. Sue J

    Sue J Registered User

    Dec 9, 2009
    8,035
    Oh no:( I hope things have at last quietened down. Sounds like you need the Dr again if you haven't already had them. Thinking of youxxx:)
     
  9. Loobylou1

    Loobylou1 Registered User

    May 22, 2012
    1
    Urine Infection

    Hi my mum is exactly like this, got very aggresive over last 2 weeks. The staff at the home have done a test today which shows no infection so no it has been sent to labs.
    She has been complaint for months about pain in her stomach, had ultra sound but nothing found. We dont know what to do, dr not interested.
     
  10. SEASHELL

    SEASHELL Account on hold

    Sep 2, 2009
    82
    Urinary infections can cause confusion and don't forget to check the medication as this can cause urinary infections too (amongst many other things).
     
  11. susy

    susy Registered User

    Jul 29, 2013
    801
    North East
    Not being daft here but has she had any painkillers? I know she is now on antibiotics again but she may well be also experiencing pain but unable
    To localise or explain or even recognise it. Young children explain most pain as tummy pain. I think adults in her condition also do that.
    If you havnt please do try her with some paracetamol and see if that helps. Give it 30 mins after giving it to see if there is any improvement or not.
    This is so harsh for you. I do hope you get some calm very soon. X
     
  12. jojop

    jojop Registered User

    Nov 9, 2013
    66
    SE London
    Hi, my mum also can manage to go 30 hrs plus without sleep she constantly on the move, bouts of aggression. Last summer went through 6 week period where she did this every two nights. I was nearly at meltdown.
    Docs did blood tests and found it was thyroid problem, reduced medication and all nighters stopped.....for 3 months then started. Managed to get Melatonin for her, sometimes this works sometimes not. Still have an all night episode occasionally but it is usually due to an infection.

    Hope the antibiotics work if not get docs to give her full medical check up that's what I had to do.
    Feel for you going through this, it is hard and exhausting
    Xx
     
  13. Cole_H

    Cole_H Registered User

    Oct 3, 2012
    40
    Thanks for all the advice on this. Mum was ok for 3 weeks, like her old self, it was a 100% change for the better then suddenly 2 days ago back again to aggression and being very cruel to me.

    I don't know how much more I can take, I feel it's breaking me.

    Does dementia normally act like this? Weeks where someone is completely normal and then bad again.
     
  14. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,619
    USA
    Cole, I'm sorry to hear this; it must be so trying for you.

    I'm not an expert but do know from my reading here, and in my support group, that any kind of infection can cause a sudden and alarming behaviour change, so I would consider talking to the GP about another UTI or other infection. I think constipation could perhaps also trigger a behaviour issue and as you mention she's mentioned "tummy pain" in the past, wonder if this is something you're dealing with.

    If you can't get an emergency appointment today, and I realise it might be too late in the day, then perhaps consider ringing an ambulance? You don't really need another 36 hour stretch with aggression and no sleep.

    Sorry I haven't better suggestions for you.
     
  15. Wigan

    Wigan Registered User

    May 5, 2013
    73
    From my experience a sudden change is usually down to a UTI/Chest Infection/Constipation or any kind of pain.

    UTI's affect people in very different ways and some like your mum will behave completely out of character and, have huge amounts of energy, whilst others will just be quieter than normal and sleep a lot.

    They really are nasty infections and it is important to be prescribed the right antibiotic.
     
  16. AlisonS

    AlisonS Registered User

    Jan 24, 2016
    1
    Mother in psychiatric ward and refusing medication

    My 87 year old mother admitted herself into a psychiatric ward on November 18th last year. She had been on 45 mg Mirtazapine, 5mg x3 Diazepam and Zopiclone at night. The psychiatrist took her off all this by the 23rd. Tapering is meant to be over at least 3 months. She went into meltdown. No sympathy from staff or psychiatrist. She had one UTI which was treated for three days. Then she was diagnosed with dementia while being on cold turkey and also being given pregabalin for 3 weeks which the psychiatrist admitted could cause 'cognitive impairment'. Just after New Year she became very confused and disorientated and the staff refused to believe it could be a UTI. Staff agreed to give covert medication because my mother was now refusing meds but it has never transpired.

    Everyone in the ward is commenting on how my mother's health has deteriorated but they won't do anything about it. I've asked them to get a urine sample but they seem unable to do this although it wouldn't be difficult.

    I'm at my wits' end. How could my mum deteriorate so quickly and worryingly and the staff be so ignorant?

    Please help.
     
  17. Risa

    Risa Registered User

    Apr 13, 2015
    483
    Essex
    Hi Alison S

    Can you see the PALs at the hospital to raise a complaint about your Mum's treatment and make an appointment to see your Mum's consultant to discuss her condition? You have obviously got serious concerns that need to be addressed.

    My Mum had been on long-term medication and she was weaned off of it a few years ago (under GP supervision over a period of months) and once the meds were out of her system, it did reveal that the meds had been masking the full extent of her dementia. I'm not saying the same could be true for your Mum but it is something to consider if your Mum has been taking meds for a long while. However not weaning her off of them slowly and not testing for a UTI sound very wrong and you do need to get some answers.
     
  18. Clb89

    Clb89 Registered User

    Feb 3, 2016
    3
    Hi Cole,
    It sounds as if you are going through a terrible time.
    If all the physical things have been ruled, I.e constipation, infection, pain etc out perhaps the dementia has progressed?
    Is your mum currently open to a managing memory team or a community mental health nurse?
    Perhaps you need a bit more support and professional advice?
    I hope this gets better for you both soon X
     
  19. Clb89

    Clb89 Registered User

    Feb 3, 2016
    3
    Hi Alison,

    I would ask to see the ward manager/matron in the first instance and if it still cannot be resolved then to contact PALS.
    z
     
  20. Clb89

    Clb89 Registered User

    Feb 3, 2016
    3
    Hi Cole,
    It sounds as if you are going through a terrible time.
    If all the physical things have been ruled, I.e constipation, infection, pain etc out perhaps the dementia has progressed?
    Is your mum currently open to a managing memory team or a community mental health nurse?
    Perhaps you need a bit more support and professional advice?
    I hope this gets better for you both soon X
     

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