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  1. #1
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    Update on Lionel

    The last six months:
    I can hardly believe it is almost six months since my dear Lionel went into the care home.
    Looking back over my notes on him, as he will have his review soon, it has become very apparent how his condition has changed.

    First month was unsettled, but why not, as he had to adapt to a new home, with me just visiting.
    Next three months were pretty good, had some really lovely times together. Last six/eight weeks he has gone so downhill.

    His mobility has deteriorated to such an extent that he can no longer stand, even assisted . Difficulties in transference from armchair to wheelchair means that he can no longer be taken out of his room. He shouts obscenities at his carers when ever they try any form of personal care, and all care has to be done either on his bed, or on the floor. He resists the hoist. He now has to be fed with everything, although his appetite is good. Does he know me? I don’t think so, but at least he likes what he sees.

    Writing this down has clarified what in my heart I know. What now, only time will tell. How much time…………….please let me have lots more. I cannot think of my life without him,

    I have ordered him a new type of armchair, to enable him to sit more comfortably, without sliding forward or being strapped in. It is on wheels, somaybe we shall be able to get out in the gardens again. It seems like only yesterday that I posted a pic. of him outdoors, and a lovely one of us both on Valentines day.
    Makes me even more determined to treasure every single chance.
    Connie

    Carer and Volunteer Moderator

    "Today is as good as it gets" - Lionel, upon diagnosis 2002

  2. #2
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    Dear Connie, your account of Lionel is so moving.

    It's so sad that he has gone downhill so quickly, but good that he is being well cared for -- and that he has you!!!!!

    What a great gift your love is.

    It was good that you made the decision when you did to give him 24 hour care, those three months when he was cared for and you were able to have lovely happy visits have given you moments to treasure. I remember so well the photos you posted.

    My heart aches for you, love, the more so when I think that I have this to come.

    And yet despite everything your post is positive, because it is written in love. I too pray that you will have lots more time together.

    Thank you for that.

    Love and hugs,


    Hazel
    Carer


    Don't grieve for what you have lost, rejoice for what you have had.

  3. #3
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    Writing this down has clarified what in my heart I know. What now, only time will tel

    Thanks for the update Connie. It makes me feel so sad reading it as I know I probably have the same ahead of me. You handle it all so well and I so admire you for that. Although I try to anticipate the future, it is in the end 'day by day' and each good moment has to be treasured.

    Hope the armchair is successful.

    Best wishes Beckyjan

  4. #4
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    Dear Connie, Look after yourself.

    Sylvia
    Carer and Member of the Volunteer Moderation Team

    I cried because I had no shoes until I met a man who had no feet

    About me

  5. #5
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    DEAR CONNIE.How very sad , you know i have always followed you posts on Lional , so i know the reason you had to make the decision to have Lional in a care home was because his mobility was so bad and the constant falls he had ,so six months on , it is not surprising how bad things are going by my own experience with Jim .will he be able to stay at this home or will he have to move to a nursing home , i hope not .... as you seem happy with his care here . so glad you still make him happy .he might not as you say recognise you , but i bet deep within there is still a glimmer . I hope the wheel chair makes some difference . its a credit to you that you keep on striving to make his days bearable,
    TAKE CARE,
    ANGELA.XX

  6. #6
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    I sincerely and deeply sympathise with you Connie and i truly wish there was somthing practical I could do.

    All I can do though is offer you my love and hope that you can continue oto find the strength needed to carry on.

  7. #7
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    Connie

    Just to let you know I am thinking of you. Fingers crossed that new chair turns up soon and you can enjoy some more lovely moments in the gardens together.

    Sending you hugs.

    Alison
    x
    "The problem with the world is that everyone is a few drinks behind." - Humprey Bogart.

  8. #8
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    Dear Connie, may the sunny weather shine a whole lot more on you and Lionel. (Have you noticed what a wonderful spring it's been?) Thinking of you and sending kindest regards, Deborah

  9. #9
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    Connie
    I'm not sure what to say.... maybe just that you find peace, and Lionel can sense your love and caring. I can appreciate how hard it must be through those long winter months indoors in the care home, the spring must be greeted with such pleasure by all of you.

    Thinking of you
    anne

  10. #10
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    Dear Connie,
    I am thinking of you, and what comes to mind is the saying

    He may not remember what you said or what you did, but he [U]will[U]remember (know) how you make him feel

    Treasure the good times and let the future take care of itself.

    Please grant me the strength to change the things I can change, the serenity to accept those I can't change, and the wisdom to know the difference.

  11. #11
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    Hi Connie

    Thinking of you and Lionel.

    Hope the new chair arrives and you can have many more happy memories out in the garden

    Love
    Alfjess

  12. #12
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    Thank you

    Thanks for all your messages of support.

    Angela, you have mentioned the one aspect that concerns me most - the fear of Lionel being moved. I have the care home on my side, even though some of the newer staff will not see to Lionel (he is so hard to handle and abusive).

    The consultant called to see him today, as the CPN is concerned about him staying where he is. So upsetting. I know there are other good places around, but Lionel so settled where he is really, and majority of staff so understanding, as they had just a little time to get to know Lionel the man, not the monster he appears to be now.

    I could not find better carers to help Lionel and they are so supportive to me.

    Please keep your fingers crossed for me, and him.
    Connie

    Carer and Volunteer Moderator

    "Today is as good as it gets" - Lionel, upon diagnosis 2002

  13. #13
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    Oh I will, Connie, I will.

    Sylvia
    Carer and Member of the Volunteer Moderation Team

    I cried because I had no shoes until I met a man who had no feet

    About me

  14. #14
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    Everything crossed, Connie!

    Love,


    Hazel
    Carer


    Don't grieve for what you have lost, rejoice for what you have had.

  15. #15
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    HI CONNIE
    So sorry Lional has reached this stage ,
    i know the despair you must feel
    as we have both trod this same path
    watching a loving kind man,decend into what you now describe .
    I know you have had many ups and downs with Lionals medication,
    i wondered if he has been tried on something to calm him down ?,
    and so enable him to stay where he is now .
    i hope there is still some scope for this .
    wish i could help
    but can only send you ,love ...hugs ..... and stuff.
    stay strong
    ANGELA.XXX

 

 

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