heatherlev
New member
- Joined
- Apr 22, 2005
- Messages
- 7
Hi there,
My brother was just recently diagnosed with ALS. He also has a spinal cord injury, so has been disabled for a long time now, and it's possible the symptoms were masked by his other medical problems. He has listed me as his healthcare proxy... originally, in his previous living will, he had said he wanted not to be kept alive with artificial means, but now that he has been diagnosed, he now says that he wants to be kept alive as long as possibly just as long as he doesn't experience pain.
My question is, what can we expect in terms of specifics as this disease progresses? Will he have pain? What is life like when this disease progresses to its fullest extent? Can someone be kept alive indefinitely with a respirator and feeding tube, or will this person be in too much pain? Also, we live in the USA and I don't know what the quality of care will be for him. He currently lives at home, but maybe he will wind up in a nursing home. He may be kept alive, but would he be able to find a way to communicate, and even if he could, would anyone be listening who could get him what he wants?
My brother was just recently diagnosed with ALS. He also has a spinal cord injury, so has been disabled for a long time now, and it's possible the symptoms were masked by his other medical problems. He has listed me as his healthcare proxy... originally, in his previous living will, he had said he wanted not to be kept alive with artificial means, but now that he has been diagnosed, he now says that he wants to be kept alive as long as possibly just as long as he doesn't experience pain.
My question is, what can we expect in terms of specifics as this disease progresses? Will he have pain? What is life like when this disease progresses to its fullest extent? Can someone be kept alive indefinitely with a respirator and feeding tube, or will this person be in too much pain? Also, we live in the USA and I don't know what the quality of care will be for him. He currently lives at home, but maybe he will wind up in a nursing home. He may be kept alive, but would he be able to find a way to communicate, and even if he could, would anyone be listening who could get him what he wants?