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      CommentAuthorSusan L*
    • CommentTimeFeb 26th 2010 edited
     
    After meeting with Jim's neurologist today, Jim decided he has had enough, he is tired of fighting this insidious disease. From today on he will begin to wean off of his medication and work towards Comfort Care only. I support his decision becaused it is WHAT HE WANTS, but I'm crushed and scared. I'm trying to stay strong and have faith that God will give me the strength I need to get through the tough road ahead. I will need the support of you my friends now more than ever. Please, pray.

    On top of all this, we are applying for a long term placement for Dylan. He has been unable to transition back to life at home. He is very unhappy without the kind of structure and routine that would drive most of us mad. There is a wonderful Residential Farm for boys and girls ages 10-19, only an hour from here. We have heard excellent reports on it. We have a meeting on Monday. My Mom is taking this very hard, He has been her lifeline since my Dad died.

    Life is just way to hard.
  1.  
    Susan, for all the times you have wrapped your 'arms around' all of us - we are here to do the same to you now. You, Jim, Dylan and your Mom are in my prayers. I can't imagine the pain you are going through. May the good Lord give you the strength to endure this.
  2.  
    Susan, I am praying for you and Jim and your family. We have a Sherrifs Ranch program here that is exceptional. I am sure that it is structured like the one that you are looking at for Dylan. One of my friends three sons went there. They are still assisted with college and other things. They were very happy there.
    • CommentAuthorAnnMW1157*
    • CommentTimeFeb 26th 2010
     
    Here I was starting to feel sorry for myself and read this post. Susan, life is way too hard. You have gone through far too much.........but when life gets better....and let's hope it really does, sometime, you will not look back with regret that you hadn't tried everything in your power to make things work. But, I worry about your health....This is too much.

    Hugs to you....

    Ann
  3.  
    I understand Jim's decision, and support your supporting of it. Hard though. Life is tricky.
    • CommentAuthorJean21*
    • CommentTimeFeb 26th 2010
     
    Susan, I am so sorry you are going through these awful times again. I wish I could help you with more than just prayers and love. Hang in there. Arms around and around and around!
    • CommentAuthorMawzy*
    • CommentTimeFeb 26th 2010
     
    Oh, Jean. This time just has to be so very hard for you. I'm really sorry to hear this. And, I hope I don't sound trite, but I know our Lord will give you the strength you need. And, then, one day you'll look back and wonder "How did I do all of that?"

    Blessings!
    • CommentAuthorZibby*
    • CommentTimeFeb 26th 2010
     
    Hugs and prayers for you and your family. You are strong whether you believe it now or not; someone for weaker folk like me to look at and try to follow. Angels around you.
  4.  
    Susan, it sounds like Jim has made a proper decision, and there will be better days ahead for you -- take it from one who has survived the hard work and sadness associated with this infernal disease and emerged whole on the other side. After six months, memories of the bad times have faded for me to the point where it all just seems more like a bad dream. I hope and trust that you'll fare as well, because goodness knows you deserve some good times! I don't pray, but just know that my thoughts and best wishes are with you. BIG WARM HUGS!!!!
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      CommentAuthordeb112958
    • CommentTimeFeb 26th 2010
     
    Susan, Hugs to you and your family. I'll keep you all in my prayers.
  5.  
    Susan, you know I am here. If you need me email me on facebook. Maybe I can help you in some way. Your family will be in my prayers. My Mom said that when Rob passed she lost a son, so I know how she feels. Just let me know dear heart. I am here. (((((hugs)))))
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      CommentAuthorfolly*
    • CommentTimeFeb 26th 2010
     
    Susan, prayers and good thoughts are with you and your family. You can do this for Jim.

    Mawzy, it's so good to see a post from you. If you can, please let us know how things are going.
    • CommentAuthormarygail*
    • CommentTimeFeb 26th 2010
     
    Susan I am praying for you and your family lets hope things don`t get to bad and he has a now peaceful remainder of his life, god bless you , you held my hand many times and put your arms around me, here`s to you (((((((((((((((HUGS))))))))))))))))))))) now it`s my turn to console you,God will give you the strength and wisdom to cope. Gail
  6.  
    Susan I hope things go the way Jim and you wish. Dylan, your mom and all of you are in our thoughts.
    • CommentAuthorehamilton*
    • CommentTimeFeb 26th 2010
     
    Susan, may all the arms around that you have passed to all of us come back to you a thousand fold.
    • CommentAuthorJanet
    • CommentTimeFeb 26th 2010
     
    Susan, so sorry. Things have been so difficult for you. I hope all of our concern is of some help. Arms around.
    • CommentAuthorBev*
    • CommentTimeFeb 26th 2010
     
    Susan, I haven't been here long, so I don't know you well, but from reading your posts it seems you have had more than your share of problems. I hope I can be as brave as you when the time comes. I wish you well.
    • CommentAuthorJudy
    • CommentTimeFeb 27th 2010
     
    Oh Susan, I'll certainly be thinking of you. Arms around YOU for sure. The only glimmer of blessing is possibly that Jim was actually able to
    decide this for himself. Even though it would be hard to accept, I would feel less confused about what to do if my DH made those decisions for himself. Will certainly be praying for you and your family.
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      CommentAuthorSusan L*
    • CommentTimeFeb 27th 2010
     
    Oh Lord, I am so afraid that if I cry, I will not be able to stop. Took my medication and had a good nights sleep, inspite of getting up twice with him. Our daughter is such a blessing. This is so hard for her, I worry about her being able to handle the stress in light or her recent successful sobriety. She is the one person who can still make him laugh. They love each other so much, it warms my heart to see her caring for and teasing him. I've d/c'd the first med. We will d/c one a week. Thank you all for all the prayers and hugs. I honestly KNOW that I could not get through this time without you all. I am so blessed to have found this warm and loving home. Arms around, Susan
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      CommentAuthorbuzzelena
    • CommentTimeFeb 27th 2010
     
    Susan, thoughts and prayers to you and all your family. You will get through this with the support of your friends on this site. I know it must help that Jim was able to participate in the decision. Hang in there and know we are all thinking of you.
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      CommentAuthormary75*
    • CommentTimeFeb 27th 2010
     
    Dear Susan, I think that as you go along, you will find peace of mind with your husband's choice, and my prayers are with you all.
    • CommentAuthorHanging On
    • CommentTimeFeb 27th 2010
     
    Susan, I send you so many hugs. My heart goes out to you. Please, just hang on. Dig in your heels and just get through this. Jim has made the decision, and it's one my dh would make also. You will come out the other side of this.

    Much love to you.

    Hanging On
  7.  
    Susan, my DH has already made that decision, too. In fact, every time we go to his doctor, he tells him 2-3 times "what I want", so there is no question about it. But I do feel your pain - we all do. Dig in - you'll make it okay.
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      CommentAuthorJeanetteB
    • CommentTimeFeb 27th 2010
     
    Arms around, Susan (((((((((hugs))))))))))
    • CommentAuthorbriegull*
    • CommentTimeFeb 27th 2010
     
    And mine as well!! ((((((hugs!!!)))))))
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      CommentAuthorSusan L*
    • CommentTimeFeb 28th 2010
     
    When we went to the dr's Friday Jim had lost 7 lbs. I am now noticing that he is eating less, for instance, the was a bottomless pit and now 3 chocolate chip cookies and a small glass of milk, filled him up and he doesn't want dinner?????
  8.  
    This meal time issue is common it seems. My DH has always loved everything..all sorts of veggies and fruits..you name it. He was never a picky eater..now he is and not much. I do find him grazing on pretzels in the afternoon. I do wonder about the meds and the effects on the sense of taste and if this has anything to do with this.
    As to your husband's new eating style..maybe something like ensure or boost or maybe some smoothies might be interesting to try. Or even now and then a chocolate shake ( or whatever flavor he likes) might be a good try at least to keep his wt stable.
  9.  
    Susan, Ensure can be used in place of the milk and one nurse even said you could add instant breakfast to their milk to add calories. But mine ate every two hours, about 5 thousand calories a day and couldn't hold any weight. I hope this might work for you.