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Old 05-15-2003, 08:45 PM #3 (permalink)
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Join Date: 2003
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JOY JOY is offline
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Join Date: 2003
Posts: 28
JOY is an unknown quantity at this point
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CHRIS thanks much for your reply, I called my brother to see if my daughter and I could visit but he refused, saying he had a bad couple of days and that he would get someone to contact me soon. He is this way with our mom aged 70 she is upset that she cannot be there for him in his time of need. I guess he has the right to call the shots, but I cannot help feel that we are being shut out I know his body has failed him and his speech is very slurred maybe he has no dignity left and is wanting to live his life out without us near to see his pain. I know he knows how much we love him and are willing to do anything to support him and maybe thats all the comfort I can find right now. I hate what this disease has robbed him of he used to be a black belt, a body builder and a lead singer in a group, his life has changed so much I wish I could take some pain away from him.
He has refused all help from our ALS clinic and caregivers who are lined up with mattresses and assisted devices for him but he has given up. I wish to say that if anyone has this pain to face that you have the dignity and strength my little brother has and to allow those who love you to help out they need to as much as you need to know its available to you.
-a concerned and loving big sister xo
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