Thank you all for your thoughts and prayers. The 2 years as his caregiver was rough, but he went on his own terms, with no vent and his family and hospice at his side. By no means did he give up, his sarcastic humor was with him to the end. His heart gave out and he slipped away peacefully just as he wanted. Now my work is just beginning. While he was alive my job was to be his caregiver. Now my job is to fight for a treatment/cure for all PALS . 100+ years is way too long for a disease to be around taking our loved ones away.