Jlynn
Distinguished member
- Joined
- Mar 16, 2016
- Messages
- 415
- Reason
- Lost a loved one
- Diagnosis
- 12/2015
- Country
- US
- State
- NH
- City
- Wolfeboro
Hi, I have been here before but mostly just quietly listening. Here's our story in a nut shell. My brother was officially diagnosed in December of 2015 although was told he may have ALS a year and a half earlier.
Once told that he went on with his life until a year and a half later when things had gotten worse so finally was forced to get a diagnosis. This only happend when he could no longer work for more than 20 hours a week without exhaustion. He lived about an hour and a half away at the time and then moved home, not for help but he needed a place to live because he couldn't afford where he was anymore.
He now lives by himself in a family home. At present his condition is such....severe weakness in both legs, left hand is unusable and the right hand is about 3 months away from being unusable based on his progression so far. He just told me yesterday that his swallowing is affected and choking is a very real possibility daily.
Here's our problem. He has always been a loner to begin with. At this time he appears to be disconnecting from all of us including his much loved 2 young children. He won't answer the phone or the door. He never leaves the house. It seems he is all done living and is waiting for that "cut off" when he knows he will no longer go on. He says he has a plan for ending his own life. He means it. He says he will never use a wheelchair, never get a g-tube. Nothing.
He went to clinic once and says he will not go back. He takes no medication. Nothing. Those of us that love him are forced to sit back and watch. It's killing me. This man is my little brother and I love him. Please tell me what I'm supposed to do. What am I supposed to say? This is the saddest thing I have ever witnessed. Any advice given would be graciously accepted.
Once told that he went on with his life until a year and a half later when things had gotten worse so finally was forced to get a diagnosis. This only happend when he could no longer work for more than 20 hours a week without exhaustion. He lived about an hour and a half away at the time and then moved home, not for help but he needed a place to live because he couldn't afford where he was anymore.
He now lives by himself in a family home. At present his condition is such....severe weakness in both legs, left hand is unusable and the right hand is about 3 months away from being unusable based on his progression so far. He just told me yesterday that his swallowing is affected and choking is a very real possibility daily.
Here's our problem. He has always been a loner to begin with. At this time he appears to be disconnecting from all of us including his much loved 2 young children. He won't answer the phone or the door. He never leaves the house. It seems he is all done living and is waiting for that "cut off" when he knows he will no longer go on. He says he has a plan for ending his own life. He means it. He says he will never use a wheelchair, never get a g-tube. Nothing.
He went to clinic once and says he will not go back. He takes no medication. Nothing. Those of us that love him are forced to sit back and watch. It's killing me. This man is my little brother and I love him. Please tell me what I'm supposed to do. What am I supposed to say? This is the saddest thing I have ever witnessed. Any advice given would be graciously accepted.
Last edited by a moderator: