1. connie

    connie Registered User

    Mar 7, 2004
    What do I do.

    Had a really lovely day with Lionel. We laughed together, we cried together, (we were listening to the music from ‘Les Miserable’, when he said “you always cry at this track,.... play it again’)

    Before I left this evening he said “ are you Connie?” I replied I was, but that it did not matter if he forgot my name. “No. no, you don’t understand, sometimes there are two of you, and I know you should only be one, so I ask “are you Connie?”” I realise he is drifting from me

    . I got home at5.30 and phoned the home at 7.00pm to ask them to put his TV on to a certain channel. “He has asked to go to bed, he is always so exhausted after a day with you” I realised there was a quiz style program on, that , had I been with him, we could have enjoyed together.

    So he goes to bed early, I spend the evening alone. I just miss him soooo much, not just his presence, but him ‘Lionel’ the man..

    We do have the best of worlds, compared to some, but how I so, so wish things were different. Don’t know how long I will be able to carry on at this stage. Hate my life, except for the hours I spend with Lionel.
  2. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
    Dear Connie
    made me so sad to read you post and to know that you are so unhappy.
    I do understand.
    I get time off now and I go out,what for ?
    I often wander round and think what am I ,a lost soul,I have everything and I have nothing.
    I want to go back home ,back to my Peg,but she isn't there anymore.
    The awful thought is that she will never be there again.
    I want to go home and tell her what I have seen what I have done,but when I do she will say"I don't know what you are talking about"
    Connie love, it is a cruel cruel illness,thinking about you,ring me if you need to.
  3. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    NW England
    Dear Connie, is there anything to stop you spending more hours with him?

    Hugest hugs... Karen, x
  4. bel

    bel Registered User

    Apr 26, 2006
    to a very special lady who we all love to bits

    dear connie
    i know i am speaking from us all
    Wish this compurtor had arms cos we would all wrap you around in them
    although hubby is with me he is drifting away all the time so i do feel for you
    sending a load of love bel xxxxxxxxxxxxxxxxxx
  5. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    #5 Grannie G, Jan 20, 2007
    Last edited: Jan 20, 2007
    Dear Connie, I felt so sad reading your post. I am sad for you and sad for myself. You are showing me what I will have to face in the future.
    I don`t have enough hours in the day, you have too many. I can`t do the things I`d like to do, and now you can, you probably don`t want to because you`d only enjoy them with Lionel.
    In some ways this seperation is the worst. You are in one place, he is somewhere else, and this disease prevents you being together.
    As Karen asks, could you spend more time at the home, or would you be made to feel unwelcome.
    My heart goes out to you. I can think of no solution, nothing to help you overcome your unhappiness. I do wish there was.
    I can only say one thing. The husband of a friend died on February 28th. last year. They had no children and she has no family. I know it`s no help to you, but she would love to be able to visit him in a home.
    Please don`t take offence at that. I know you are aware some others have more to bear, you can`t find it helpful just now. Love Sylvia xx
  6. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Hello Connie

    It is just the worst part of the thing, the most heart-wrenching, fearful part.
    Perhaps consider what Karen says - it is excellent advice. I did that for as long as I felt it benefitted Jan, and after that, for as long as I needed in addition, before reducing the time just a little. It is time well spent, and, without the strain of doing the full 24/7 caring role, you can concentrate on each other to the full.

    Main thing - take care of yourself.
  7. Amy

    Amy Registered User

    Jan 4, 2006
    One day, one moment at a time. There is no easy way through this - you have to find things to fill your time, and no doubt they will feel meaningless. You have to go on, because you just have to - that is what Lionel would want for you. You have to remember that you have children and grandchildren who love and need you - your strength, your love, your compassion. Lionel is your soulmate, and your heart is bleeding - but you will be OK - it will never be the same, but you will find a way to get through this.
    Take care.
    Love Helen
  8. Nell

    Nell Registered User

    Aug 9, 2005
    Dear Connie,
    Can't offer you anything but {{{HUGS}}}
    Your post made me cry - this is the cruellest of diseases.
    Thinking of you. Nell
  9. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland

    Dear Connie and Norman

    Sylvia has (once again) expressed my feelings exactly. I'm not at your stage yet, but I already know the feelings of sadness that my John is gradually slipping away from me.

    This is a dark time of year, a time to be cuddled up in front of the fire with our loved ones. But our loved ones have already left, in spirit if not in body, and we are left behind, lonely and afraid. How can we not be sad?

    We can't do much to ease each other's sadness, but at least we have each other, and know that we are feeling similar emotions.

    Stay strong, Connie and Norman, Lionel and Peg need you still, as do we all.

  10. j.j

    j.j Registered User

    Jan 8, 2007
    read your post and cried, because it hurts so much, but t does help a little bit to log on and find we are not alone,
  11. Cate

    Cate Registered User

    Jul 2, 2006
    Newport, Gwent
    Dear Connie

    I am so very sorry that you are sad and unhappy, sorry honey I have no words of advice or wisdom...................just a massive HUG..

    Cate xx
  12. maria29al

    maria29al Registered User

    Mar 15, 2006

    Your post made me so sad. You seem to have been feeling low recently. I dont know what to say, but like others here I am sending you a huge hug.
    Take care, Much love
  13. Jann

    Jann Registered User

    May 24, 2006
    tingewick, bucks.
    Dearest Connie and Norman,

    Words can't express how much I am feeling for you. It is so hard to accept and come to terms with this disease at every stage but we all here know that somehow we have to find a way of holding it together. With the support and love from family, friends and all at TP, it helps to keep some sanity in knowing that we are not alone. But it still doesn't stop us feeling bereft, helpless, heartbroken and angry to see our loved ones sliding away from us. Be strong and be brave, as we know you are. Hold on to the deep love you have for each other and all the treasured memories locked away in your hearts; these things can never ever be taken away.

    Thinking of you both and sending you all my love.
  14. mel

    mel Registered User

    Apr 30, 2006
    Connie and Norman
    I feel very sad to read your posts and I can't offer you any help except to offer my support to you both............

    the" loss " of my mum has been brought home to me over the last few weeks when visiting her in hospital.......we hardly speak.....I merely sit and hold her hand....but when I see the other patients chatting to their daughters I really miss the conversations we used to have............

    Love and hugs to you both
    Love Wendy xx
  15. angela.robinson

    angela.robinson Registered User

    Dec 27, 2004
    DEAR CONNIE such a painfull post.one i can relate to. i know you spend as much time as you can with LIONAL ,and have to travel quite a distance to do that . you have to balance all that with making a little life for you, and time for your family and grandchildren. if you were with him every day ,all day ,the loneliness of evenings and nights ,are still so hard to get through.Dare i say that the seperation from a loved one, taken from your care in this way, was for me more heartbreaking than the final parting .sending you love and strenght to cope.ANGELA.X
  16. Lynne

    Lynne Registered User

    Jun 3, 2005
    Dear Connie

    Just a line to send you my love and tears.
    As with 'actual' bereavement, I can never find words that are any use at all, and this horrid disease adds slow torture such as you have expressed to the loss.
  17. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    Dear Connie,
    Each stage of this bl***y disease has its own 'worst part', the panic and frustration in the early days, the exhaustion when the going gets tougher, and the despair when recognition fails and communication is reduced to zero ....... but this premature parting, these 'solutions' that are forced upon us (in everyone's best interest .....) is so very hard.
    It is exactly 12 months since my husband's consultant said that 'he should really be in residential care', but somehow we have managed to hang on, for how much longer I don't know. But when the tears come at the end of a particularly tough day, after yet another struggle in the bathroom or a restless night ........ that's when I think of you and all my other friends on TP who have had matters taken out of their hands and have had to 'hand over' the care, for whatever reason. God, how I dread that day, and how I wish it may never come. Complete no-win situation.
    I am sorry: this is not exactly helping you, except for the fact that, although we are not quite in the same situation as you, I do so feel for you and hope that the good hours you spend with Lionel make up a little bit for the loneliness when you are not able to be with him.
    Take care, Connie, and hang on to the good moments!
    Best wishes.
  18. daughter

    daughter Registered User

    Mar 16, 2005
    Dear Connie,

    Somehow the really good days seem to makes the bad parts worse, it's like being lulled into a false sense of security and then being abruptly reminded that things will never really be as they were again.

    Dad was taken into hospital today after collapsing at his Home. He's ok, they think it's a chest infection and have kept him in for a few days. Dad was asleep all the time we were waiting for the tests results and so on. When he was finally moved to the ward he woke up, looked straight at Mum and said "Hello, Ice", using the shortened version of her name that he always used to call her. Mum's ghast was well and truly flabbered, and another bitter-sweet memory to treasure.

    Where do you go, what do you do Connie? Keep going. For each step backward, there will somehow be another one forward.

    Love from Hazel.
  19. Margarita

    Margarita Registered User

    Feb 17, 2006
    #19 Margarita, Jan 21, 2007
    Last edited: Jan 21, 2007

    I would say that was a heart less thing to say , if you don't mind me saying
    If you are feeling so low anyway, yes Karen, Bruce are right visit more if you like His still your partner

    all I can relate it to is knowing how much my mother miss my dad when he was not around anymore, there was nothing in the world I could do to make her feel better, its your personal pain I know

    I hope your feeling a littlie better today and that each day may bring you a new beginning in how to learn to live with it xx (((Hugs))))

    Don't know how it does , but I hope that for you
  20. alex

    alex Registered User

    Apr 10, 2006
    Hiya Connie

    My heart goes out to you..............its that horrible process of acceptance that your going through......dealing with all the emotions of slowly losing the most important person in your life, you deny, accept, make deals with god, feel guilt and all the other emotions attatched to this......i know how hard that is, and its easy for people to say 'make the most of the time you have together' and as sensible as that is, its really tough.................i wish i could say something that would help you through it, or make it easier, but i can't...........the one thing that helped me when i was going through it was someone on tp said ..........'keep breathing'...........it worked for me.

    You will get through this Connie.

    Love Alex x

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