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    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

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Sudden and very rapid cognitive decline

Discussion in 'I care for a person with dementia' started by Marnie63, Dec 26, 2015.

  1. Marnie63

    Marnie63 Registered User

    Dec 26, 2015
    1,576
    Hampshire
    I'm having a tough time with my mother and wonder if anyone else has had a similar experience. She was absolutely fine until around two and a half months ago when she suddenly became confused over around 3 days. She has been hospitalised three times and the medics have tried to find what caused this to happen so suddenly, but to no avail. She was dehydrated on first admission (no idea how) and had low potassium, both sorted. She had CT and MRI scans and they did find small vessel damage, but could not determine why things had happened so quickly. TIA/delirium/masked dementia have all been mentioned but no firm diagnosis. On final discharge she was diagnosed with 'Acute Confusional State and Cognitive Decline'.

    I'm at my wit's end. Can dementia come on so rapidly? And how on earth can she have such advanced symptoms after only two and a half months? She is very distressed, delusional and paranoid. Over the past few weeks in hospital she has had to be medicated with Haloperidol. Now I just have her on Trazodone at night, which doesn't seem to last to the morning. The community psychiatrist prescribed Lorazepam to use as required, but I've used it a few times already as it's my only hope of us both getting a night's sleep (I'm alone in dealing with this).

    I know dementia can happen suddenly, but nowhere have I been able to find any reference to someone declining so rapidly. I can't distract her with anything and currently all she does is talk about someone coming to steal her, someone taking all my money, trees moving in the garden, she's going to die and all sorts of other bad things. The same stuff, every day, for around two weeks now. She does not understand what TV or media is anymore and the content of TV programmes and magazines/papers starts appearing in her delusions.

    Has anyone had experience of such a rapid decline in a loved one?

    The thought of placing my mother in a home is very upsetting, but I know I won't be able to cope like this for long, unless alternative medications are prescribed.

    It's very hard to listen to all the delusions and paranoia that fill her head and I think I am starting to crack up ...
     
  2. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    10,070
    Merseyside
    Welcome to TP :)

    Dementia can be volatile. Are you getting any practical help?
     
  3. Ozzy71

    Ozzy71 Registered User

    Nov 23, 2015
    26
    My dad had very rapid decline in Nov. he had had pneumonia and a stroke. He changed within days and needs full time support now. I'm sorry it is very traumatic and must be so hard on your own. People on this forum have wonderful advice which I am sure will start with making sure you have help and support.
     
  4. nitram

    nitram Registered User

    Apr 6, 2011
    18,830
    Male
    North Manchester
    "...she suddenly became confused over around 3 days...

    ...She was dehydrated on first admission (no idea how) and had low potassium, both sorted....

    ...She has been hospitalised three times...

    ...On final discharge she was diagnosed with 'Acute Confusional State and Cognitive Decline'."


    Unfortunately the acute confusion caused by the dehydration and low potassium could have triggered a step function in the progression of a dementia that had not progressed enough to be noticed.

    Keep a diary of events and don't be afraid to hassle the CPN/GP about her condition and it's effect on you. If possible email them a day or two of the diary asking for help.
     
  5. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,740
    it is also worth checking for a urinary infection or other infection - the confusion does sound very typical of that kind of behaviour or fluctuating potassium
     
  6. marionq

    marionq Registered User

    Apr 24, 2013
    5,753
    Female
    Scotland
    It sounds as if she needs her meds adjusted either the doses or the type of med. if she is only having one dose of Trazadone then that is probably not enough. Is it 50 or 100 mg? She may need a series of doses throughout the day which they will only do gradually. Get back to her consultant rather than her GP as the latter is limited in what they can prescribe.

    Does she have a CPN you can phone for advice?
     
  7. Marnie63

    Marnie63 Registered User

    Dec 26, 2015
    1,576
    Hampshire
    I've had a load of help since this started - friends, GP, Adult Services, Community Mental Health Team. It's still hard to cope with though when there's no one else in the house except me and this lady who is my mum, but somehow isn't my mum any more.

    Our assigned CPN has been very supportive. She is the one who said I could use the Lorazepam, but only if I really had to. I think I am going to have to. I'm to give 0.5mg at a time (max 1mg in 24 hours). I HAVE to use it as it's the only thing that sedates her enough to sleep at night. There must be other options out there, but I guess it's trial and error. The CPN is away for a few days so I might have to give the team a call this week for further advice. The Trazodone dose is 100mg at night. To be honest, it doesn't really seem to have much of an effect.

    I don't know why I'm so nervous of using the Lorazepam - I guess it's because all of this is so new to me and I'm nervous of pumping these meds into my mum.

    I've got a few Haloperidol in the house, but I hate the effect those had on her, so will only use them if I get really desperate.

    Mum has been checked for infections etc and everything was fine.

    I know this is not sustainable at home for long, but I can't accept the thought of her going into a home right now. The fact that this is so 'fresh' and happened so recently means I'm still struggling to even take it all in, never mind deal with it. I have this awful vision of my mum sitting sadly in a care home, all doped up, incontinent and terribly scared and confused, just can't get that vision out of my head, and keep crying and crying ....
     
  8. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,740
    Hi Marnie
    As others have said if you can get the meds at home right then you may well find yourself in a much more positive position in a few weeks time. Hang in there and go with the meds and use all the support that you can get out there
    Thinking of you xx
     
  9. Marnie63

    Marnie63 Registered User

    Dec 26, 2015
    1,576
    Hampshire
    Thanks all. I've just given her the other piece of the Lorazepam (had just given her a sliver of it before!). Last night it worked wonders - the delusions continued but she was happier and slept all night. That's going to be the key for me - a good night's sleep so that I can cope with the days. Will ask for a review of meds this week, or at least will ask for advice re on-going Trazodone and Lorazepam. I guess I am still learning!
     
  10. nitram

    nitram Registered User

    Apr 6, 2011
    18,830
    Male
    North Manchester
    "...I guess I am still learning!..."

    If you are not doing so keep a record of all medication and when it was given combined with a diary of your observations of her behaviour. This way you will build up an accurate record.
     
  11. Marnie63

    Marnie63 Registered User

    Dec 26, 2015
    1,576
    Hampshire
    Fortunately I decided to log events right at the start of mum's 'decline', so I am keeping quite detailed notes of meds, behaviours, etc. It has also been very useful as there have been so many people calling and visiting so I can reference back to names and telephone numbers. For what it was worth, I was also able to give the docs a print out of the history of the illness when it all first started.

    I'm really, really struggling to accept this. I know I'm not the only one, nor will mum be the only one who developed confusion so rapidly, but somehow this sudden onset seems particularly cruel. I wish I could turn the clock back to a few months ago, but of course that's ridiculous. I really miss my dear mum ... :(

    My plan is to see how the carer support goes (two sessions last week and two more this coming week - should build up to around 15 hours a week). On Tuesday I will be going to lunch at a friend's and will stay a few hours - much needed respite! Next step will be introducing her to day care, perhaps a day with people of her own age and some activities will cheer her up, or at least keep her occupied. I can't currently find anyway to do this as she no longer seems to understand the concept of TV being entertainment, books being fiction, etc. I guess, as I have read before, I will have to tackle this situation on a daily basis.

    I forgot to mention that mum is 89 and I am her only close living relative. It's very hard on your own!!

    I will need to ask the CPN if I can increase her dose of Trazodone at night, maybe that will help to calm some of her fears during the day also. Does anyone have experience of the use of Trazodone in calming some of the paranoia and delusions associated with Dementia/Confusion?
     
  12. marionq

    marionq Registered User

    Apr 24, 2013
    5,753
    Female
    Scotland
    Marnie my husband started on 50 mg of Trazadone with a Zopiclone sleeping tablet about a year ago when he was getting up several times a night to go to work. This worked brilliantly but he began to wander during the day and we had endless occasions when strangers would bring him home or ring me on his mobile phone to tell me where he was. The police got involved and social services said he needed to go into care for his own safety.

    Meanwhile his consultant was gradually increasing the Trazadone and he now takes 100 mg at lunchtime and 100 mg after dinner. It has calmed down his compulsion to go out wandering and made him much more manageable. I see no need at present for him to go into care so the meds have done the trick. He takes no other medication as he is in good health.
     
  13. Marnie63

    Marnie63 Registered User

    Dec 26, 2015
    1,576
    Hampshire
    Thanks Marion - that's very helpful info. Mum was given Zopiclone during one of her hospital admissions to help her sleep at night. I guess the psychiatric team have to try lower doses initially and this seems to be what they are doing with mum. They have told me to use the Lorazepam when necessary but then to try her off it and just on 100mg Trazodone at night to see how that compares. It's good I have some back up. I want to try to keep mum at home for as long as possible.
     
  14. Louby65

    Louby65 Registered User

    Mar 26, 2014
    620
    Scotland
    Hi Marnie 63. I myself have had various degrees of 'meltdown' while caring for my own mum more or less on my own for a long while . After a couple of admissions to hospital in 2014 I now have a carer who looks after my mum. I pay her with a Direct payment from my local council . I applied through the 'personalisation assessment' route . It took18 months but it won't take as long as that now , as it was a new concept at the time . Would it be worth it to contact your social worker for an assessment . This would give you time to yourself if you could employ a carer. My mum goes to day care 3 1/2 days a week . I work full time so I need her to be well looked after when I'm not there and I believe the centre and her carer provide just that . My mum was assessed by psychiatrist as she was very restless during the night , starting early evening . So classic sun downing time !. At the time she was on zopiclone but psychiatrist said it was not useful in elderly dementia and that trazadone was more beneficial . I have seen an improvement . She still gets restless at times but I do get more sleep than last year. As I have mentioned in previous posts , I also give her one paracetamol occasionally as it has been researched to prove it can aid agitation in dementia . I do empathise with you Marnie63, this is a long road we walk with our mums but keep walking with her and hopefully things will improve soon . We all know we will never have our precious mum back as we remember them , but we won't give up on them either . Stay strong Marnie , and please don't think your alone . Contact the social services in the new year and ask for a carers assessment for yourself as well as a needs assessment for your mum . Good luck . Lou
     
  15. banger696

    banger696 Registered User

    Sep 17, 2015
    225
    North East
    I know your story only too well Marnie. I found Lorazepan useless and was giving 4 times a day. Mum ended up in hospital and consultant has diagnosed with Alzheimers but it was all very sudden.

    Mum is now on Amisulpride 25mg three times a day and Memantine 20 mg a day to stop memory decline the consultant said. But the Amisulpride was a godsend as the mental health team in the hospital prescribed it and getting repeats was a nightmare but that is another story.

    The Amisulpride is a mood stabilizer, mum still has skewed thinking, usually around teatime but isnt distressed about it and she seems alot calmer than before hospital.

    Her usual belief is that she has to go home around teatime and sometimes that her home is a few doors down and she does not recognise me.

    Before the amisulpride she would be hammering on the windows and doors saying to call the police because she had been kidnapped and various other delusions. Now I am able to talk her out of it explaining that she actually is in her own home.

    I would certainly ask for a med review with the consultant, I had to fight tooth and nail to keep her on amisulpride as the consultant wanted to try something newer. But at the end of the day you have to get them to listen to you as you are the one putting up with the diesease.

    Tim
     
  16. Marnie63

    Marnie63 Registered User

    Dec 26, 2015
    1,576
    Hampshire
    Louby - I've had all the assessments (our social worker has been very good) and monthly direct payments are about to start to cover 15 hours of care a week. Fortunately they have confirmed that I am allowed to use this how I wish to buy care, hence the five hour slots - it will give me a decent break in the day. Hopefully I can get mum used to day care soon as well. A full day of 'freedom' will be very welcome and will allow me to see how she copes in a care home environment. At home I just can't get her interested in anything and we just sit here in the lounge with her staring at the TV. I've tried everything, but she is either not interested, or starts reading/looking/doing and then says she doesn't want to do it any more. Bizarrely, the only thing she seems keen to do is the washing up!!

    Banger - thanks for the advice on meds that worked for your mum. I guess I am still in the trial phase with my mum as she has only been home from hospital for two weeks. My great fear on her discharge was that all the notes of her night activities on the ward said that she was constantly wandering and two of her three admissions to hospital were down to the fact that things came to a head really quickly with the restlessness at night and the build up of my lack of sleep over numerous nights in a row (plus a continuing attempt by the docs to try to establish what had caused her sudden decline). I will have to give the CPN an update on behaviours next visit and ask them to adjust meds to stabilise the 'issues'. I have to start 'getting over myself' in this in that I worry about giving her these meds, but actually she has to have them to make her condition more comfortable.

    At the moment mum is fixated on someone coming to 'steal her away', which gets a lot worse at sun down! She also warns me not to go outside after dark as someone will steal me away, and then she will be in a huge amount of trouble. She also talks constantly about me paying out too much money for everything and when we go to the supermarket (which I can just about manage with her currently), whenever I put anything in the trolley, she tells me I will have to pay 'too much money' for it. There are other bizarre references too, and I am beginning to realise that a lot of it goes back to her early years and war times (she grew up in eastern Europe and they lived very close to a concentration camp - I am sure some of the fear stems from her memories of that time and things that went on around them - must be terribly frightening for her if she thinks all of that is still going on). I keep trying to re-assure her, but this has been going on now for over a week. I hope the CPN can recommend something to calm her fears a bit and make her 'happier'.
     

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