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Desperately seeking support

Discussion in 'Memory concerns and seeking a diagnosis' started by Angryperson, Oct 27, 2017.

  1. big l

    big l Registered User

    Aug 15, 2015
    12
    feeling ratty as hell this morning. oh started getting agitated early on as we had to drop the car off at the garage for it's mot prep. when reminded that he hadn't washed, had breakfast etc. got even more agitated, angry, unkind - the full programme - whilst I was trying to get ready. even the simplest things are monumental - and you can't bundle a fully grown man into a car the way you can a stroppy child. - unfortunately! there. blood pressure back off the ceiling; feelings of murder subsiding. all because I can let it out and I know there are people out there that will smile wryly
    and understand. thank you for being there.
     
  2. big l

    big l Registered User

    Aug 15, 2015
    12
    I think I posted(?) the last message in the wrong place. it was meant for everyone not just to scream in angryperson's ear! anyway this is my second attempt. good morning peachez, canary, angryperson and sammie234 your support is life saving.
     
  3. Sammie234

    Sammie234 Registered User

    Oct 7, 2016
    145
    Shropshire
    That’s ok I’m currently coping with a rather miserable 2 yr old this morning his younger sister is asleep as is my hubby and am trying to cook a bit of dinner as well, this babysitting is getting hard work :eek::eek: Hope everyone keeps sane:p
     
  4. Peachez

    Peachez Registered User

    Jun 19, 2016
    73
    Female
    South East England
    smiling wryly here... o_O

    Mine's been being very obtuse, very up and down, & DD2 and I are walking on eggshells... can't wait for our visitors to come and go again this weekend, so we can all settle down again :oops:
     
  5. big l

    big l Registered User

    Aug 15, 2015
    12
    oh gone to the pub to meet a friend. he's happy and i'v got some time to myself. it seems to work fine if he goes out - and he is quite safe, but if I go out he won't have had lunch, just sat and watched television - he was, until quite recently, organised and active, but now a couple of times he's fallen, so I don't leave him for too long - lunch, maybe - but not all day. what I find most difficult of all is the fact that oh can appear so normal to friends, I don't get this same man for myself and i find it so sad. then, when oh has a 'slide' in behaviour it's hard because I don't know where we're going and then when we reach the new plateau I grieve all over again and try to re-adjust to the new oh. then there's the frustration at not knowing what to do for the best for us both. push for further tests - (oh knows who the prime minister is!) or - what? I first noticed a change in oh's behaviour in 2007 so that's 10 years ago, but the diagnosis of mci only came in 2013 when he had 2 minor strokes and we found it in the consultant notes. in march 2017 oh had a defbrilator fitted and the opp seemed to have brought on a further decline in his mci. my lovely man is fading and it's breaking my heart. family? still largely in denial - he's their dad - I shall have to try harder!
     
  6. canary

    canary Registered User

    Feb 25, 2014
    4,639
    South coast
    Oh @big l , its heartbreaking, isnt it?
    My OH is the same - knows who the prime minister is etc etc.
    This phenomenon is well known on here - it is known as "host/hostess mode".When they are with other people - usually family or medical staff - they can concentrate a harder (probably subconsciously) and sort of pull themselves together so that they appear quite normal. Unfortunately they can only do it for short periods of time and it really wears them out. So what usually happens is that family come to visit - see the "host mode" and go away quite sure that things arnt as bad as you are saying; and then you have to pick up the pieces where he is tired, confused and ratty :rolleyes::mad:
     
  7. Flossie56

    Flossie56 Registered User

    Aug 30, 2017
    2
    My first post...I had no idea this 'Host' mode was so common. My dad does this and when my brother visits he thinks dad is fine and that I'm being too pessimistic. It's so frustrating. You need to be with someone all day to see the real situation.
    This declining and then a plateau before further decline. It's somehow reassuring to read that
    I am not alone.
     
  8. canary

    canary Registered User

    Feb 25, 2014
    4,639
    South coast
    No, @Flossie56 you are certainly not alone.
    Also, welcome to Talking Point
    :)
     
  9. Angryperson

    Angryperson Registered User

    Oct 27, 2017
    24
    My husband had an ICD fitted some years ago now. Unfortunately he had a series of inappropriate shocks and after a second opinion, had it removed. He now has AF. I feel very bitter against the arrogant doctors who have treated him with wrong medication and the ICD all of which may, or may not, have contributed to his current predicament. No-one will take responsibility for the mistakes. No-one, apart from his GP who appears powerless, will acknowledge his decline.
     
  10. big l

    big l Registered User

    Aug 15, 2015
    12
    now I better understand the reason for oh's rattiness after a visit from friends/family or a trip to the doctor/hospital. of course the level of concentration needed to keep up with what's happening is tiring. one thing that i find particularly upsetting is the derision and ridicule - for example, oh gets extremely agitated when he doesn't 'get' something that i'm trying to explain to him, but (fortunately!) it's because my communication skills are so poor - he can't imagine how I ever managed to last in my job (infant teacher). oh well. onwards if not necessarily upwards.
     
  11. big l

    big l Registered User

    Aug 15, 2015
    12
     
  12. big l

    big l Registered User

    Aug 15, 2015
    12
    one thing comes across load and clear in everybody's messages - medical gurus don't give sufficient weight to what we are telling them that we are living with. I sometimes wonder if they think we're the afflicted ones?
     
  13. canary

    canary Registered User

    Feb 25, 2014
    4,639
    South coast
    I really did have doctors think I was making it all up :eek:
    Because FTD is an unusual dementia many people (even doctors) dont recognise the symptoms and because he denied everything I told the doctor and he passed the Mini Mental State Examination showing no signs of memory loss, he was believed and I wasnt.

    I now now that the MMSE (designed for testing for Alzheimers) is not a good tool in picking up FTD and also that his denial of problems was actually anosognosia - as symptom of dementia where they are literally unable to understand that they have anything wrong with themselves. They often have a feeling that Something Is Not Right, but are unable to understand that this Something is actually them - so they blame everything and everyone else.

    Fortunately, OH was eventually referred to a neurologist who specialised in FTD and at that point I was believed.
     
  14. Peachez

    Peachez Registered User

    Jun 19, 2016
    73
    Female
    South East England
    Hello @Flossie56 and @big l , good to see you here. @canary , what you said above sounds so familiar - the fight I had for Drs to see that something was wrong! They need to get away from the 'one size fits all' attitude. Though there's a bit of me that thinks they don't want to know if it's early stages, as there's so little they can offer us to help... :(
     
  15. DaisyCat

    DaisyCat Registered User

    Dec 2, 2017
    10
    Female

    I really feel for you and can empathise with your situation. My OH is 66 and sounds very similar to your OH. He won't accept that he has a problem other than he forgets names!
    It's so frustrating because when we're out with people - he gets muddled but doesn't notice that he's confusing them! No one has said anything to me yet and he's adamant that I'm not to tell people about the dementia. I try to pass off his forgetfulness in front of others but this won't be able to last forever.
     
  16. Peachez

    Peachez Registered User

    Jun 19, 2016
    73
    Female
    South East England
    Hello @DaisyCat , thanks for your post, it's good to know we're not alone. I am finding more and more, that people we interact with end up talking to me even if he started things off, it just sort of happens. I've even had him pass over a phone conversation with a utility to me as he couldn't cope. I also have to fill in the blanks for him in front of others, and get so tired of his constant questions. Last night I gave up and just said "I don't know" over and over... ho hum... if he would just get off his computer and put up my new curtains, they've been waiting for him all week... sometimes my patience wears a little thin...
     

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