1. bel

    bel Registered User

    Apr 26, 2006
    757
    coventry
    hubby has fld
    words are getting worse
    understanding
    i need to be a mind reader any help -please
    love bel x
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,892
    Kent
    Can he still write bel.

    When my father lost his speech, he was still able to write for a while.

    But when my mother lost her speech and understanding it was impossible. I hope this isn`t happening to Bob. Can he use gesture to tell you what he means or does he get cross because he expects you to understand .

    Love xx
     
  3. janetruth

    janetruth Registered User

    Mar 20, 2007
    563
    nuneaton
    Hello Bel,

    When Mum (who lives with us) talks 'all gobble de gook,( well thats how I write it in my diary, it doesn't really matter how you say it, it is a language known only to the sufferer). I just try to go along with it, however bizarre it may be.
    I know she will not remember what has been said and it is easier than trying to be rational.
    I have to keep reminding myself that my lovely Mum is here in BODY but not always in MIND.
    How heartbreaking for you and ALL those who are caring for their partners.
    Patience IS a virtue and this has to be the biggest one when caring for a loved one with AZ.
    I wish you well
    Take Care
    Janetruth x
     
  4. daughter

    daughter Registered User

    Mar 16, 2005
    824
    Hello Bel,

    Do you think your hubby knows what he wants to say but cannot recall the word for it? I know it was often very frustrating for my Dad when he could not remember the word for something. We would try to figure out what he meant, but I think you're right, you need to be a mind reader! Sometimes it felt like that "Two Ronnies" sketch where one of them was always finishing the other's sentences, and never getting it right.

    I don't know why, but this also reminded me of the day I gave Dad a hot water bottle, when his hands were particularly cold. He held it for a while, then gave it back to me saying "you can turn it off now". It made perfect sense in a strange way, but it's not always so easy to work it out.

    love from Hazel.
     
  5. bel

    bel Registered User

    Apr 26, 2006
    757
    coventry
    Thanks so much

    all
    you make so much sence
    but i an in a mess
    thanks sylvi
    bel xx
     
  6. Kate P

    Kate P Registered User

    Jul 6, 2007
    565
    Merseyside
    Hi bel,

    I feel for you - mum also has serious speech problems and can generally only say yes and no - of which she does not understand the meaning - and point energetically at things.

    It's like playing charades isn't it?

    Unfortunately, there seems to be no helpful answer to this - we tried getting mum to write things down but it didn't work as she couldn't collate her thoughts well enough to do it.

    I wish I had something helpful to offer.

    Kate P
    XXX
     
  7. bel

    bel Registered User

    Apr 26, 2006
    757
    coventry
    he is dyxlectic

    so cant write
    i understand eventually what he wants to say but that is not good enough he wants me to understand straigt away
    or he gets angry
    most of the time i pretend to understand to save the shouting
    but i am keeping it all inside
    its like walking on egg shells i never know when he is going to blow
    love belx
     
  8. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Bel, just want you to know I am thinking of you.

    One of Lionel's closest friends is in a similar situation. When I first knew him I could understand him, gradually you could only make out one or two words in a sentance, than nothing............for him and his wife a nightmare.

    He has just gone into the local unit for assessment...........immediate problems as no one can interpret what his needs are. Like Bob he cannot write either.
    He is just 56. Why have I written all this, I suppose to let you know that you are not alone.

    Chin up my darling, you are doing a wonderful job. Post here any time, sometimes it helps. Love n'hugs,
     
  9. bel

    bel Registered User

    Apr 26, 2006
    757
    coventry
    thanks all i know i am not alone with you all on tp

    thanks connie
    when they cant find the words and can not write it is hard
    i am hitting an all time low just lately and find it hard to talk and explain
    i am trying to get my posative head on --and talk and joke and maybe help some one else on tea room ---sorry to be crude i need a kick up ---
    love bel x
     
  10. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland

    No Bel, that is the last thing you need. I'm sorry I haven't replied before but I've been down in the dumps myself.

    I don't know if you know, but loss of language is John's main problem, and yes, it's very hard to deal with. John can't read or write, understand TV, understand a lot of what I say to him, or say what he wants to say.

    And the intelligence is still there, he knows what he wants to say, and gets so frustrated. He also sometimes thinks I'm being awkward when I can't understand him. He also gets very bored.

    You have to accept that Bob is not going to get any better, in fact he's going to get worse. So you have to look for survival techniques for yourself. Try to get out, go to places where you can talk to people -- clubs, adult education classes, anywhere where you can talk. Otherwise you'll just get more and more depressed -- I did, until I got carers to stay with John while I went out.

    That's enough for now. I just wanted you to know that I understand what you are going through, and I know how hard it is to cope with.

    I'll try to reply to any questions you have to ask.

    Love and hugs,
     
  11. Wits End

    Wits End Registered User

    May 9, 2007
    3
    North Yorkshire
    Hi Bel,
    My husband (57) is getting worse at talking and now finds it difficult to read, although he trys to hide it, he gets pleasure still from watching TV which is a godsend as I currently work 3 days a week. It is difficult to work out what he is saying and my daughter (17) just finds it impossible and just ignores him or treats him like an idiot, which creates problems in itself i.e fireworks :mad: Keep your chin up you are not alone and I find reading other peoples scenarios so helpful in understanding my frustrations at times.

    I am starting the process of looking for a carer to sit with him when I'm at work - if anyone has got a job description for a PA for caring with someone with communicatin skills I would appreciate it.

    Wits End xxx
     
  12. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Wits End

    Welcome to TP. It must be difficult for you to cope with your husband's problems, and work three days a week.

    Have you had a carers assessment from social services? You may find that you qualify for Crossroads to sit with your husband, and for him to go to daycare while you are at work.

    I haven'y got a job description for you, but if you get Crossroads the manager will assess your husband and choose a carer who will be suitable, if possible.

    If there is a day centre run be Alzheimer Society near you, I'd recommend that, even if you have to go on a waiting list. John goes to one, and they really work hard to get him to talk, SS ones tend to leave people to chat or play ards, which is not suitable for someone with language problems.

    Good luck,
     
  13. Wits End

    Wits End Registered User

    May 9, 2007
    3
    North Yorkshire
    Thanks Hazel for your help, social worker visiting us on tomorrow so will mention the Crossroads and will contact AS for any day centres.

    Will let you know how I get on, with regards
    xxx
     
  14. bel

    bel Registered User

    Apr 26, 2006
    757
    coventry
    thanks hazel i know bob is not going to get any better--

    its good to talk to some one who has the same problems re talking
    i know ineed to get survival things for me but i work full time in our shop bob will not hear of carers help of any kind he is not bad enough ---his words --
    love belx
     
  15. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Oh bel, I know how hard it is. I suppose you do get chance to talk to people in your shop, and that's a blessing. It's important not to let yourself become isolated.

    John didn't want carers at first either, but I convinced him that they were coming to help him with his speech. The same with daycare.

    It's not a lie. I think it's good for him to keep trying to talk to different people, about different subjects.

    The Alzheimer's daycentre is great, they really stimulate him. Do you think Bob would go along with that?
     
  16. bel

    bel Registered User

    Apr 26, 2006
    757
    coventry
    witts end thank you for post

    so sorry your hubby is also getting worse at talking
    like yours bob gets plesure from watching tv thak goodness
    he loves comedies old ones -fools and horses etc
    love bel x
     
  17. bel

    bel Registered User

    Apr 26, 2006
    757
    coventry
    day care centre no way

    hazel
    at the moment he wont hear of it
    he has his mate who has parkinsons -heart trouble etc etc he is a lovelly guy bob and him have the crack as they call it
    but---long story i am worried about this as well
    you are right i should not isolate my self i need to talk and open up or i will fold up
    love belx
     
  18. bel

    bel Registered User

    Apr 26, 2006
    757
    coventry
    friends concerns

    bobs friend told me how concerned he was about bob
    bob has spent a few days with him -last week he is only saying what i already know
    bobs medication has changed recently -does not help
    plus he and his mate KEEP TRYING to do an odd job of work they are not capable
    love belx
     
  19. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Bel, thank you for letting us know how things are.
    We may not be able to help, but we are hear to listen.

    Take care now, love n'hugs
     
  20. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,892
    Kent
    Thinking of you bel. Wish I could help.

    Love xx
     

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