What to do when symptoms worsen

Discussion in 'ARCHIVE FORUM: Support discussions' started by jude1950, Jul 19, 2007.

  1. jude1950

    jude1950 Registered User

    Mar 23, 2006
    182
    Lincolnshire
    hi all
    My husband was diagnosed with Alzheimer's disease in April of last year it was thought that he was about two and a half years into the disease and his initial MMse score was 18. With Reminyl he has improved on his mmse score to 22/23 when last tested in June .
    My concern is that his speach and comprehension ability has worsened dramatically. He doesn't seem to understand if he is asked to do something I thought at first it was the short term memory problem but even if he is asked to pass something to me he repeats the request 2 or three times before attempting to do anything and then will look at where the object is and still not recognise what he is supposed to be doing. He often speaks gibberish and gets words mixed up. I have discovered this morning that his writing is also deteriorating he has difficulty signing his name and when I wrote his name and address for him he was unable to copy it down.
    He is not due to see his CPN for another 6 months should I leave it until then or should I speak to his CPN about this sudden drop in ability? I thought I would ask the TP members what they thought and ask if anyone else has experience of these symptoms.

    thanks

    Judith
     
  2. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    Yes my mother has had all those symptoms it seen to happen slowly, as in blocks but she can still sigh her name , even thought its all over the place

    I would talk to CPN if I was you , I find its good to talk to someone about it on phone
     
  3. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Judith

    The short answer is yes, I think you should ask for a review as soon as possible. Any sudden deterioration is worth investigating, if only to set your mind at rest.

    Regarding the symptoms, yes, they are very familiar to me. My husband was diagnosed with AD seven years ago, and prescribed Reminyl. His symptoms developed in exactly the same way as your husband's.

    His speech and comprehension went quite quickly, and he was soon unable to read or write. But apart from that, he showed few signs of AD.

    Two years ago our consultant told me that the diagnosis might be wrong. He thought that John might be suffering from Primary Progressive Aphasia, a form of dementia where for the first few years only the language centre of the brain is affected. It is only in the later stages that other dementia symptoms emerge. John has now reached that stage.

    I'm not saying that this is what your husband has, I'm not a doctor, and can only speak from my own experience. But if you feel that this sounds familiar, it might be worth asking about.

    I must stress that PPA is a very rare form of dementia, and is easily mis-diagnosed. And it can only be confirmed at autopsy. But it's worth asking.

    Good luck,
     
  4. jude1950

    jude1950 Registered User

    Mar 23, 2006
    182
    Lincolnshire
    Thank you margarita and hazel. I think I will speak to his CPN I shall have to pick my moment to do this as my husband gets very agitated if he hears me discussing his behaviour with anyone ..like most dementia patients ..there is nothing wrong with him it is all in my imagination when he see's the CPN he presents very well and tells her that he can do all sorts of things like cooking gardening dressing unaided she was so convinced last time she said she was surprised that he was on attendance allowance ...
    I had to step in and tell a few home truths about him verbally attacking anyone who parked outside the house...wandering outside after we have gone to bed then leaving the front door open all night, messing with the electric switches and blowing the fuses ( he used to be an electrical engineer) trying to trim the lawn with his hands on the cutting blades of the shears instead of the handle, physically threatening children on their way home from school because they were shouting and messing about..he grabbed one boy of 12years old and shook his fist in the boys face it is a good job the boys father accepted that it was the Alzheimer's that was the problem.
    Because I had told the CPN of these incidents (there are lots more instances of what he gets up to ...they are too numerous to mention) he was very angry with me and it took ages to calm him down.
    he does go to the local shop for a paper some mornings so I will Ring the CPN then.
    Thanks once again for your replies that's the beauty of TP someone has always gone through the same thing and can reassure you that you are not on your own.

    Judith
     
  5. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,659
    Kent
    Hi Judith.

    I can only repeat what Hazel has said and encourage you to seek medical advice as soon as possible.

    Six months is far too long to wait before he sees the CPN, when you have concerns about such a deterioration in his condition.

    In fact I would go further and suggest you make an appointment with his consultant.

    Take care
     
  6. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Judith

    Reading your second post, your husband doesn't sound so much like mine.

    John has never shown any signs of aggression, and if he did he wouldn't have the language to verbally abuse anyone.

    But it certainly sounds as if he should be reviewed. Changes like that should be investigated as soon as possible.

    Good luck,
     
  7. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,659
    Kent
    Hi again Judith.

    My husband gets just as agitated as yours when he hears me speaking about his condition to anyone.

    I don`t do it any more. I write letters.

    I write to the GP and the consultant. My husband doesn`t have a CPN, as he was most offended by her and now refuses to have anyone in the house remotely connected with his condition.

    I identify with everything you say about your husband`s attitude to his condition and suggest you might find writing about him, rather than speaking on the phone or in his presence, would do a great deal towards keeping the peace.
     
  8. Nebiroth

    Nebiroth Registered User

    Aug 20, 2006
    3,518
    I'd say that you need to get professional medical advice as soon as you can. It's possible that a sudden deterioration can have a root cause, like a UTI (urinary tract infection). Although every case is unique, I believe Alzheimer's is usually marked by a slow, steady decline over years. Sudden dteriorations are AFAIk more characteristic of something like vascular dementia (and it;s possible to have both types, called "mixed")

    Six months is much, much too long to wait. The tendancies towards agression and behaviors that put your husband and others at risk should be reported. This could be to the CPN, the consultant or your husband's GP.

    All of these will be very aware of the difficulties you mention - ie patients convinced there's nothing wrong with them, relatives "going behind their backs" etc and are usually happy to engage in a little deception, such as "just called in to see how you are as I was in the area today" or something like that. As GrannieG suggests you could write if you can't speak on the phone or speak in person.
     
  9. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    yes now that has happen to my mother
    or when she does not drink a lot of water , she seem more confused and aggregated, that anything could set her temper of . also my mother has diabetes 2 , so depending on if she high or low , her moods use to change getting very aggressive, just like your husband , so I would get right confused if it was the AZ or her diabetes

    my mother was just like your husband , that I could not phone anyone or talk about her on phone , when she was around .

    also acting like they was nothing wrong with her , if Social worker or district nurses came around , she lost her temper so many time with district nurses , I am sure that why they don't come around so often anymore .
     
  10. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    Hi Judith

    Couldn't agree more (with everything else Nebiroth said too) .....

    I know I go into panic 'Oh, this is the next stage' .... when mum deteriorates ... a couple of days - even hours - later she can present as totally different ..... Have experienced aggression .... jumbled speech ... inability to write .... inability to even remember my name ..... and then she can be very coherent, capable ..... I gather in our case this is the 'Lewy Body' element of her 'mixed dementia' .....

    Difficult to know when the alarms are 'false' or only temporary (UTIs being a perfect example) ..... but what IS important is that you have some means to gain support for yourself ..... I note you refer to the CPN as 'his' ..... Do you have support you consider to be 'yours'? (Apart from TP, of course!) Although I've only met her once, I see mum's CPN as a primary source of advice for ME ......

    Oh - and a diary - of presentation/incidents/observations ??? I know Brucie is the biggest advocate of that ..... any patterns/triggers?

    Love, Karen, x
     
  11. jude1950

    jude1950 Registered User

    Mar 23, 2006
    182
    Lincolnshire
    Hi Karen

    I recognise everything you say about the panic when there seems to be a deterioration ...then sometimes when things settle down again I think that perhaps I was worrying over nothing. The CPN is very good and I know I can talk to her about my husband. I am not well myself I have rheumatoid Arthritis and angina so asked for an assessment of my needs as well unfortunately although I was offered two days day care respite for James he will not go. He insists there is nothing wrong with him and states he doesn't need looking after even when it has been pointed out to him that I am not well and need the break he still insists that he is going nowhere he will not consider a carer coming into the house to sit with him whilst I go out for a couple of hours.
    I know it is the disease but sometimes I do not like this selfish person he has become.
    He has three children of his own (again a second wife/husband becoming the sole carer) but the two sons live away and have very little contact. My son did try to take him out for a couple of hours the other day he has his own business and took him into his workshop... he went to answer the phone and in those few moments James had fiddled with some equipment and caused some expensive damage ! so that didn't work out. His daughter lives nearby but she has her own problems so I am stuck in this situation until he deteriorates and has to accept day care because I can no longer cope.

    I have just read this back and I sound like I am complaining sorry to burden you all I am by no means in the worst situation of all the TP members but it helps to get it off my chest .

    I will ring the CPN tomorrow and see if she can visit or if possible get him in to see his specialist.

    Judith
     
  12. Lynne

    Lynne Registered User

    Jun 3, 2005
    3,433
    Suffolk,England
    Hello Jude

    Wouldn't it be easier to write down your concerns (and a description of what James can & can't do, even though he says otherwise) to send or give to the CPN &/or specialist. That way James doesn't have to hear you saying things to which he will take exception. I'm sure she/he will understand why.

    I find myself that it helps to make notes about things I want to talk about, as otherwise I forget them under the stress & tension of the interview anyway.

    Best wishes
     
  13. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    Judith - soz I wasn't suggesting you were panicking - just admitting I personally could go for Commonwealth Champion on that front at times!!!!! :eek: And as for burdening ... or rather - un-burdening - that's what TP is all about at times ......

    Good luck tomorrow .... please let us know how it goes .....

    Love, Karen, x
     

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