1. bel

    bel Registered User

    Apr 26, 2006
    Sorry all i am feeling sorry for my self
    need to get it off my chest went out for lunch today me and hubby after a while no conversation from hubby i tried to get it going as i always do but NO tried to talk to him about iy He said i cant see the point in trying to make conversation i only talk when i have somthing to say
    I know its me that is wrong and i am asking too much he struggles with conversation all the time
    But i am so lonely we always used to talk 37 years all week i only say what i have to to him cos too many things confuse him
    sorry for being Selfish cos thats how i feel now talking to you all
    Sunday is my only day of not working and i miss talking to my hubby
    love bel x
  2. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
    Hi Bel
    I seem to be reading posts today that mirror some of my situations.
    I go all day sometimes and the only people I talk to are you on TP!!!
    Peg does not understand any more,I have to stop myself telling her things because they would only confuse her and I would get the usual "don't know what you are talking about".
    We used to discuss all manner of things including the future,but AD robbed us of all that.
    Take care
  3. Lynne

    Lynne Registered User

    Jun 3, 2005
    :( Oh Bel, I'm so sorry. Same feeling, if different relationship - I want my Mum back.
  4. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Me too!

    I lived on my own for 14 years after my first husband died and before I met John. Yes, I was lonely, but at least I could go out, talk to friends, go to classes, etc.

    This is a totally different ballgame. I'm with the man I love, and I'm lonely again, simply because I've no-one to talk to.

    While we were out walking Skye this morning I said 'It's starting to rain'. John replied 'Who?' (There's nothing wrong with his hearing).

    And yet he is physically very fit, and to look at him no-one would know there was anything wrong with him. I'm sure people think I'm imagining the problems.

    I would give anything to have my John back.
  5. connie

    connie Registered User

    Mar 7, 2004
    Bel, know where you are at. This illness is so cruel. Thinking of you, and all the others out there in this position.

    At least on here we can 'talk'.
  6. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Hi Bel Lynne and Norman, This is one of the hardest,. The person is there but isn`t.
    We used to talk non-stop. I used to scorn jokes about married couples sitting in restaurants not talking to each other.
    Now I avoid talking unless it`s everyday functional talking, because there is no reasoning, no logical thinking and the slightest difference of opinion or contradiction causes friction.
    This is the isolation and loneliness we face. I know what you mean Norman when the only ones you talk to are on TP. How sad is that.
    Bel, if we go out for a meal, my husband can`t even order from the menu, he asks me to order for him. He even says he`ll have the same as I have. Mind you he does that at home to. If I ask if he wants anything, he says he`ll have whatever I`m having.
    You are only trying to help, Bel, but unfortunately he doesn`t want that kind of help.
    You are not selfish, you are not stupid and you are entitled to feel sorry for yourself.
    Love Sylvia x
  7. mel

    mel Registered User

    Apr 30, 2006
    Oh Bel
    I'm sorry that you're feeling so down........oh how nice it would be to have our loved ones back for one day a week/month....year even.
    Its such a cruel disease.....
    Love Wendy x
  8. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Let me join you all!

    Strange how it is the really seemingly small things that we miss - those little conversations, holding hand - but not just to ensure the person next to us doesn't wander off, etc.

    With Jan's eyes also affected, she can no longer focus one eye, let alone both - and her eyes are like lazy eyes, never looking in the same direction. I miss her just looking at me, let alone recognising me.

    On Saturday when I had just fed her lunch and we had moved into the lounge, she puckered up her lips, so, automatically I gave her a peck. The care assistant across the room was amazed - "Jan wanted a kiss from you!" she said. Sometimes little glimmers can come though, even when you think it has all gone.
  9. Amy

    Amy Registered User

    Jan 4, 2006
    Confirms what you already know Bruce, that you are doing the right thing. When those around you ask 'Why are you bothering,she doesn't know?' There can still be connections.
    Love Helen
  10. melbee

    melbee Registered User

    Sep 23, 2006
    North West England
    Me too..................

    Hi Bel

    I am having the same feelings and emotions, but its my Mum.

    I have a wonderful hubby, daughter, sister, friends and family to talk to but.........

    my Mum and I used to talk for hours & hours about everything and nothing, shared problems, and had a laugh. Now I have lost that and I too would like it back if not for only one week, one day or even one hour.

    I dont post much on here but am always here viewing, and if it wasn't for this site and all you wonderful people too I dont know where I'd be.

    Love and best wishes to you all

    Mel x
  11. DaisyG

    DaisyG Registered User

    Feb 20, 2006
    North West England
    Same feelings....

    Dear Bel,

    Boy, do I know ho you are feeling.

    My husband is so similar.

    Some days it is 'OK' to talk to him, some days not.
    The ups-and-downs of when, and what 'I'm allowed' to say are is so frustrating.

    The more tired and frustrated he is, the more I don't know 'if' thiis is going to be a time when I get shouted at for just talking.

    I too am lonely. And sad.

    He sometimes says that...
    "He does not want to talk to someone that he has NOT chosen to talk to..."

    Sometimes he says..
    "He is too tired to talk ... it takes up to much energy... just talking..."
    and like you...
    does not see the point of pointless conversation.... (his words)...

    Days differ wildly. It's so sad.
    I never know where I am these days.
    We have moments when we are 'normal'... and I have to hold on to these ...

    Some days he 'watches' (if you can call it that) with the TV with the sound off... as it annoys him !!
    Of course.. the TV 'did that on it's own'... not him !!

    Somehow, though I don't know how I do it...
    I manage to make him smile and laugh most days ... at some point.
    I'm not generally a funny / comical person .. but I can raise the odd smile... and laugh / chuckle... through my 'comments and observations' of this life of ours.
    Some days I can see him wanting to smile... but 'hold it back' ....

    I'm not sure why voices... talking... noise levels can vary with my husband... hourly... daily .... all the time.

    Take care,

  12. Michael E

    Michael E Registered User

    Apr 14, 2005
    Ronda Spain
    It seems to help to know others have the same problem and are lost for a 'right' answer.. I really do not know how to get rid of the guilt of not having conversations with Monique any more.. We always used to - she was quick witted and amusing and .........

    Now I cannot have any sort of conversation at all - I try to start them but its really useless and I just find myself getting tired.... There is a litany of declarations of 'love' questions as to my name and availability for marriage, demands for her parents to arrive and take her out of here... but actually that's it. She just want me (or a carer) to be in the same room with her. to be close to her. to comfort her and 'protect' her from the imaginary evils of this world... She cannot watch television... Has a vague concept from the audio that there is anger or news of violent events and that sometimes distresses her....

    On the one hand all this is incredibly tiring, boring and demanding - on the other hand it is so sad, so distressing, so pathetic....

    Just wanted to join in... It is this lack of communication that is possibly the most horrible part of this disease. Seems like that gets to lots of us...
  13. Lonestray

    Lonestray Registered User

    Aug 3, 2006
    Hi Bel, I can recall one of the sadest things I heard my wife say "The words won't come out properly" Now when her mouth moves I say "It's Ok if the words won't come out right, I understand". How I wish I could! I have to understand her expressions and read her eyes. I'm just happy to have her. With regards to talking, I've always talked to myself anyway, with living in remote countryside. Once Jean said to me years ago"They'll take you away, with your talking to yourself" My excuse "I'm just thinking aloud"
    "But I heard you arguing"
    "So long as I win it's OK"
    So long as we're togeather I'll keep singing and talking and thank God for this precious time and memories. Hold the moment, God knows what's ahead in this sea of time. Padraig.
  14. suzi

    suzi Registered User

    Jan 15, 2007
    Hi Bel

    I just wanted to add that I understand all that you say. Mum used to talk all the time but now just mumbles. Her eyes no longer give me the recognition and I to would like just a few precious hours to talk to her again as Mother and daughter.

    This illness is just awful, so cruel, but the support given by others on here is a great help.

    My thoughts and love are with you Jo x
  15. Kayla

    Kayla Registered User

    May 14, 2006
    My Mum will make little jokes and seem almost like her old self and then say something really bizarre. One day she asked how my daughter was getting on with redecorating her house and said how hard she'd been working. Ten minutes later Mum was asking where my little girl was and didn't believe me when I said she was now grown up.
    Mum also thinks that she is looking after the "children" in the Nursing Home. She means the nurses and carers, because she thinks they are the girls from her Guide Company, when she was the Captain. She gets quite distressed sometimes when she has forgotten where she is, and wonders what has happened to her Mum and Dad.
    I find that not knowing what to expect when I visit Mum is very hard and I sometimes dread going to see her, but would feel really guilty and cruel if I didn't. It is also strange how I have to remind her that she can't walk, as she forgets and tries to stand up to see me out.
    The times when Mum is alert and content are very precious and valuable to me and something to treasure for the future. We can still play a game of Dominoes or look at a book together, which is good.
  16. Margarita

    Margarita Registered User

    Feb 17, 2006
    #16 Margarita, Jan 22, 2007
    Last edited: Jan 22, 2007
    I know it is not the same as I have my teenagers around for conversation. I never really thought of it before as you brought it up I also found with my mother, I have to start a conversation. I did say to her a long time a go you don’t talk to me anymore which she replied you ask me something, it does not bother me any more if she does not make since or go of the subject, reading all the post above make me realise that she one day won’t talk anymore.

    Sky said
    My mother always doing that to me , thinking she hear me say something else , it’s the neurotransmission in the brain not receiving the message rightly, sorry to sound so realistic Sounding the obverse I know
  17. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Tina, love

    It is still fresh for you. It's no time since you lost your Aunt and Uncle, and the fact that their deaths were so close together makes it 100 times worse.

    It will take a long time for the wounds to heal, but just talking about it, as you have here, will help.

    We're all here to support you.

  18. bel

    bel Registered User

    Apr 26, 2006
    thanks all what would we do without each other

    i know you all understand
    hazel i feel the same i am sure people think cos hubby looks so well and for a short time with someone is ok that i am making it up --how do they think you should look with alz--
    i am so ashamed i spent all day feeling the hurt of yesterday hubby went out with his friend so did not know when he came home i was cool with him thinking only say what i have too he must of felt it we are so close normally after reading all of your posts i should understand more and not go in a mood he can not help it so tonight i said I AM SORRY FOR BEING MOODY and gave him a kiss
    love and thanks to all
    bel xx
  19. bel

    bel Registered User

    Apr 26, 2006
    do i go in with hubby to docs

    hubby is in to see doctor wednesday for back passage exam
    i always go with him cos he forgets what they say but should i be there
    saving him feel like a child yes i am answering my own question i have to be there to know what we have to do after
    he is wetting himself
    so it needs sorting out
    love bel x
  20. May

    May Registered User

    Oct 15, 2005
    Find myself sitting here with tears welling up again. I know from a daughter's perspective how you all feel, but rang my Dad the other evening, as I always do just to give him a little conversation. We were talking about some music he was playing earlier ( he's a big band and jazz fan , has dozens of tapes)and what they had done since I left in the afternoon and he said 'I'm just sat here and I can't have a conversation, Mum and I don't have any common ground anymore after all these years...' Needless to say I held myself together until the end of our call, then came off the phone and sobbed...... This is a wicked, wicked disease. Heartbreaking..

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