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Discussion in 'ARCHIVE FORUM: Support discussions' started by bel, Mar 30, 2007.

  1. bel

    bel Registered User

    Apr 26, 2006
    757
    coventry
    SUCH wise words it does help skye i put it wrong by saying how do you look after them as a child and still think they are your love i was thinking about talk with daughter and social worker re s-x i love him with all of my heart and i think now i am excepting what I DO NOT WANT TO EXCEPT IT IS BREAKING MY HEART i know its this damed illness --i think now i am comming to beleive how bad it is and is going to be it is frightening I DONT WANT TO LOOSE HIM I KNOW HE LOVES ME and i tresure times he is the old hubby i dont mind too much nothing in return he cant help it its loosing him is becomming a lot closer and i am feeling it big time
    thanks all for your support sending love to all who have some one close with dementia
    love bel x
     
  2. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Bel, just sending huge hugs.

    It is sad, love, and it is so hard to bear. But we're all suffering the same, and we can all support each other. That's what TP is for.

    Stay strong, love, we're all here for you.

    LOve,
     
  3. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hello bel

    if only there were some magic solution for us all.

    The only things that I have found help me are:

    time -

    sometimes there seems so little of it for us, and other times the feeling is that it seems to go so slowly and the torture of seeing our loved one in such a condition will go on forever. The day to day business of making sure they are as well and happy as they can be seems to seep into me, at least, and being engrossed in that takes my worries from the immediate pain.

    changing my expectations -

    as Jan lost her ability to do things, I found it better to accept that as a fact, not dwell on it. I wrote off this or that lost capability and concentrated on what was left to make the most of that.

    I hope this doesn't sound frivolous or callous - imagine your favourite washing-up liquid, which comes in a bottle that contains the liquid in concentrate form. Just a drop or two fills the bowl with bubbles. I look upon Jan as she is now as a sort of "Jan concentrate". She is still there, but everything about her has been reduced to something that looks quite small - I just need to find the right amount of 'me' - or something else - to make her bubbles show.

    changing my focus -

    initially I was overcome by what we had lost together and what was still being lost, and I found that dragged me down so much, while not helping Jan one iota. Over time I have tried to harden myself to everything except helping make life as good as possible for Jan. Sometimes that even works.

    Somehow, knowing that others are in similar situations helps, and that is where Talking Point has helped so many of us.

    I'm glad you've joined us - in coming here in public, you are probably also helping others, and that seems to restore some spirits all round.

    One thing seems for certain - holding it all in, and not seeking that wider appreciation of our conditions, does not help.

    best wishes
     
  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,558
    Kent
    Hi bel,

    I`m so glad you are finally sharing your nightmares on TP. We are all in it together, we hate and despise it, some of us resent it, but we can do very little about it.

    How many of us made plans for retirement. We worked and saved, brought up our children and made plans for what we`d do when we had more time on our hands.

    How many of us gave a thought to the notion we might become carers.

    How many of us could even imagine the change we see in our dearest ones.

    It`s a slow painful road to acceptance.

    Keep posting bel. We are all here for you, even if we can do little to help.

    With love
     
  5. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Hi Bel
    I read your post with sadness,so much of it rings true to me.
    I am going through a rough period,days when I am sure that I cannot cope any longer ,and then things im prove a little, and I think it's not so bad and soldier on.
    I have changed my whole thinking,I was going to say changed my life!!!! That was changed for me by AS.
    I now accept that holidays even days out are impossible now,Peg walks? Shuffles so badly,so we settle for parking and watching ducks and birds, and her favourites trees.
    I have realised that I have lost my Peg,and that is a killer,she still knows me,but times when she is loving towards me are becoming less and less.
    A few days of late have been some of the sadest that I have experienced in the 11+years of caring.
    I look for what else we can do together,not a lot no conversations,at least not ones which make sense,no one to discuss things with.
    I am going to put a conservatory on the back of the house,then we could sit out and recapture some holiday feeling.
    Peg has actually showed some pleasure at this being put to her.
    The British Legion looked at the possibility of a stair lift,but the OT turned that one down.
    We are now looking at a garage conversion.
    I try to fill my time and my mind by working with any associations that I feel can further the cause of Dementia.
    I still say that I will care for my Peg as long as I am able,I cannot contemplate the future after that.
    Lokk after yourself Bel you are a very needed person.
    Norman
     
  6. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,558
    Kent
    Dear Norman,

    Such a long time of caring and you are still able to try to make improvements for yourself and Peg.

    I am full of admiration and wish you well.

    With love
     
  7. alfjess

    alfjess Registered User

    Jul 10, 2006
    1,213
    south lanarkshire
    Hi

    I am not in the same situation as someone, who is caring for a husband/wife, but I can understand when what you have looked forward to, planned for in retirement, is no longer possible.

    My husband took early retirement, which he wanted. After 30 + years of living in far off countries he was more than ready to come home and do what he enjoys. Unfortunately, we are not able to do what we would like, now, because we look after Mum and Dad.

    My husband helps me without complaint and he is much better at the caring role than I am, but I feel guilty, because he has worked for his retirement and cannot enjoy it, but what can I do?

    Alfjess
     
  8. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,558
    Kent
    Hi Alfjess,
    Whether your plans for retirement are affected by caring for a partner or a parent, it is still a blow and affects freedom of choice.
    But as you say, what can we do.
    With love
     
  9. bel

    bel Registered User

    Apr 26, 2006
    757
    coventry
    Thanks ALL

    as much as my heart is breaking like mad and i am finding things so hard at the moment to have your support and understanding Helps brucie i too wish there was a magic solution for ALL OF US but i do agree time --
    we planned as our children left home a future and time for us i was 18 when we married hubby 25 like all of us worked hard then in 2 years since hubby could no longer work this illness took it all away we were never well off but managed
    Time you are right hubbys dream was always to build a future for me and him lots of hols not having to worry about money etc material things dont bother me too much --time --if you had asked me 2 years ago how i would of been able to get this far --but time --it does not heal but it is Getting Me used to this illness That is robbing me of my hubby 55 years old we should be doing all the things hubby wanted but time and his deteriatin i am trying to be gratful that some times he is my old hubby
    thanks all i know i am rabbiting on
    love bel x
     
  10. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Bel, love, so glad you've posted. I've just sent you a PM to ask if you were OK.

    I'm sorry thinks look so black for you just now. I didn't realise you were so young. It's terrible that AD has taken so much away from you,

    It's hard for me too, but at your age it must be so much worse.

    I can't take the pain away, love, but we're here to listen. Just let it all out, we're all here to support you.

    You're doing so well.

    Love and big hugs,
     
  11. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi bel

    how I can empathise!

    I was 18 when I met Jan, and she was 25. She is now 66, but she started her symptoms seriously when she was 51.

    Time is such a challenge. I have tried to use it as well as I can.

    Time has been lost - all those years we might have enjoyed each other's company, and travelled.

    But time is not just measured in years. I have changed the way I measure and use time now. These days the seconds and minutes are more precious.

    When I'm with Jan I make each second count, as well as I am able.

    When I am not with her - the same thing - in everything I do, I try to make sure it is the best I can do, for me and for whoever is there with me.

    We can't change the path we are on, but we can look around more at each step, and try to appreciate the view, sometimes stop awhile when it is particularly nice.
     
  12. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Hi bel, thinking about you.

    I shall take to heart Bruce's wise words to you, and try to live by them.
    I am sure they have touched you as much as they have me.

    Code:
     [U]Posted by Bruce [/U]But time is not just measured in years. I have changed the way I measure and use time now. These days the seconds and minutes are more precious. 
    
    When I'm with Jan I make each second count, as well as I am able. 
    
    When I am not with her - the same thing - in everything I do, I try to make sure it is the best I can do, for me and for whoever is there with me.
    
    .

    Take care now,
     
  13. bel

    bel Registered User

    Apr 26, 2006
    757
    coventry
    thanks all i so appreciate your support

    this is just me off loading
    today is our anniversay 37 years hubby forgot ---nothing unusual now
    we made the best of it had a couple of drinks down our local
    love bel x
     
  14. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,558
    Kent
    Happy Anniversary bel. Next year, make sure hubby remembers. Remind him. ;)
     

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