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Old 12-15-2003, 01:02 AM #4 (permalink)
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John, my heart went out to you and your wife after reading your post on this thread. After being a care giver for my brother I can understand your fears about being left in the care of someone else who cannot anticipate your needs. I did not like leaving my brother with others and he also did not feel comfortable, he could no longer communicate his needs and after being with him 24-7 I felt like I was a part of him. I could anticipate problems and often would feel his needs as a part of his care.It was almost like we were connect physically and emotionally. No words had to be exchanged, I wish we had more trained people who could walk in and be comfortable with the family leaving and with the person suffering from als being comfortable being left in capable hands. As to be being a burden I can honestly say that the word burden you may feel is in fact a pain. A pain in your loved ones eyes being witness to a slowly robbing physical and emotional monster who has invaded the lives and changed their family forever. No one can ever be the same once als has entered the door, my brother often asked myself or my sister to help him end his life, but for very selfish reasons we could not honour his wishes. I am of mixed mind now on this and being witness to only a year and a half of his pain and indignified loss of human rights I wonder if it had gone on for longer if I may have changed my views. There is not a day or sometimes minute that does not go by that I wish he were still here, although I was not in his body and could not read his thoughts I may have wished to leave as he did. Everyone keeps reminding me well he is no longer suffering but we who are left here are, there are many family members who are suffering deeply and who are very angry at this disease that came into our lives forever changing it. There are some things to be said after being a witness to als, every minute is a gift every day has sunshine every scratching motion drinking motion hugging motion ect.. are now viewed as miracles of life for me somethings my little brother could not do.When I have a cold or some minor aches and pains I do not complain I take every chance I get to tell the people around me how much I love them and I try and appreciate each and any human that crosses my path treating them all as wonders of life. So John if your choices are only to choose to live for the ones who love you so long as you are not in any pain for long periods then maybe your choice to stay is all the choice you have for today. When you choose to go I believe it will be in peace and love surrounded by those you love as my brother did. My thoughts and strength go to you and your wife. Joy
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