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deteriorated

Discussion in 'I have dementia' started by Haverton, Jan 25, 2017.

  1. Haverton

    Haverton Registered User

    Sep 12, 2016
    53
    Essex
    I have somewhat deteriorated since my last memory assessment less than a year ago. My memory nurse asked me a host of questions and my score was noted. Much to my dismay and her surprise I had a score of 14 out of a possible 30.

    I am more than anxious about my poor score. It has left me ruminating about the possible consequences that me and wife may endure if this downward spiral continues.

    I have read that in general those with early onset of dementia seem to deteriorate quicker than those who experience it later in life. I am struggling to come to terms with the prospect of my wife having to support me earlier than we anticipated.

    I am sorry my post is not of a positive nature but I feel that my anxieties are justified despite my efforts to maintain a positive attitude towards this horrible disease.

    I would appreciate any help or advice members can offer.








    I would appreciate a response from those who share a similar experience.
     
  2. Shedrech

    Shedrech Volunteer Host

    Dec 15, 2012
    4,389
    Yorkshire
    hi Haverton
    the test result is a snapshot at that time, on that day - it gives a general idea of how things are with you but doesn't define you and isn't the be all and end all - what is as important is the information you and your wife are able to give the consultant/CPN about your every day activities
    I'm not trying to be positive, just put in perspective - there's no requirement to be positive all the time; you and your wife have to be realistic about what tomorrow may bring and able to get on with today - you have, as I understand it, put your affairs in order and are happy to have as much support as is on offer - you communicate with your wife and share your worries so you both know how things stand - she knows that you accept her support and her need to be supported - maybe stop thinking in time lines as it's not allowing your mind to settle and that leads to stress
    none of us has a crystal ball, and there's no point in false hopes - of course your anxieties are justified and to be acknowledged - having done that, set them to one side and go hold hands while sitting on the sofa watching some silly programme with a glass of something delicious in the other hand .....
     
  3. LadyA

    LadyA Volunteer Host

    Oct 19, 2009
    11,479
    Ireland
    Shedrech is right, Haverton. Tests are all very well, but so many things can influence the outcome on any given day. My late husband used to score very highly on the tests until quite late in his "journey into dementia" - he was in the late-moderate stage of the disease before his test scores started to dip! It could be that a bit of nervousness about the tests just made you "blank" come things?

    Whatever, I wouldn't spend too much time worrying about test scores - live your lives. And while you will likely need to make gradual adjustments as time goes by, I wouldn't be looking for changes or borrowing trouble. Enjoy as much as you can while you can.
     
  4. AlsoConfused

    AlsoConfused Registered User

    Sep 17, 2010
    1,953
    I agree - it's wise for us all to enjoy life as much as we can while we can.

    30 years ago I had to make a decision what to do in a split second. I'd sped up to overtake a lorry and as I did so, the lorry began to swing across the road (a tyre had gone). When I worry now about the "what if's", I think back to that time when my future could so easily have ended. It's an oddly comforting memory ....

    All best wishes to you and your wife, haverton.
     
  5. Jeanie 73

    Jeanie 73 Registered User

    Apr 20, 2013
    173
    N Lincolnshire
    Hi Haverton whilst I know it is worrying when our test results re memory clinic, they are just that, a test and results will vary.
    I am tested every six months and used too dread it!
    My results there have shown very little difference for last 18 months, but my last test was much more thorough and a lot longer, around two hrs, consequently it showed considerable differences, oddly enough the one I have every time was on par with previous ones!
    I doubt any of us do not worry about our condition and how it affects our relationships and there is nothing wrong with that, but once you have discussed it you move on or you stagnate.
    Perhaps ask yourself if there is any thing else you could both do to improve both yours and your wife's day to day lives, if there is then both do it, discuss it and move on.
    The time we have is precious.
    Love and hugs to you both ❤️❤️❤️❤️❤️


    Sent from my iPad using Talking Point
     
  6. Haverton

    Haverton Registered User

    Sep 12, 2016
    53
    Essex
    Thank you all for your positive yet empathetic support. I am encouraged by the general trend is that I do not put too much emphasis on a memory test when a further one could have a different result. The suggestion that I speak to my wife about my concerns and try to move on is good advice Trying to adopt the ethos "living well with dementia" will serve me better than worrying about what the future may bring is perhaps the way forward for me. It is just that I find it a little hard to put it into practice (perhaps i should concentrate on the word practice

    Having read my former posts they seem to have a general theme of worry, anxiety and the propensity to think too much about things that may not happen. Through members advice and their experiences I have learnt how this disease affects others in different ways.

    Perhaps if I concentrate on other members posts I will not be so absorbed with my own
     
  7. Red66

    Red66 Registered User

    Feb 29, 2016
    363
    I don't trust those tests at all, it is merely only a snapshot in my opinion. Let's face it who likes exams of any kind, we can all panic and not do so well at any exam, and our blood pressure rises to go with it! My Dad was still scoring high on the test and in mid to late stages of alzheimers, vascular and lewy body dementia , he couldn't use a knife and fork or get washed and dressed at the time. It obviously depends on the part of the brain affected and everyone is different so how can the one test be uniform to all????????? Don't let yourself get stressed by it as it will only make you panic and get down on yourself. Enjoy life. Red x
     
  8. MERENAME

    MERENAME Registered User

    Jun 4, 2013
    238
    scotland
    My father had mixed dementia, vascular and alz. My mum has dementia from a tumour and alz. My grandmother had early onset alz.
    Sometimes quality of life can actually improve despite the 'score' going down. I know it sounds unlikely, but some symptoms will cause you more problems than others it isn't all straight forward down. I think it would be more helpful to try and combat your anxiety than worry about the numbers. Perhaps the mental health team could help with that.
    We cannot predict the future and the timeline of these diseases are so variable. My grandmother had alz for at least 26 years and Mum is moving into year 13 with dementia
     

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