My brother was diagnosed 5 years ago, almost to the day, with ALS. He recently has taken another turn for the worse. I just went to visit him. He is scared and terrified to die. You can't discuss it with him so I am left feeling like I can't say the things I need to say to him.
He has never denied he has ALS and he has known it is terminal. Our family has never been able to discuss it with him because he has never come to terms with it. He has refused so many things that will help him with his care. It makes it difficult for him and his caregivers, which are my sister-in-law and my Mom.
We have had a lot of laughs and good times over the last five years but I only pop in for visits. He has been mean and hateful to my family (daughters, mom , sister-in-law) angry, mean, physical (he tries to run them over with his wheelchair), calls everyone ugly names in his barely understandable voice.
My family thinks he should be kind and except his disease, make peace with it. Hospice said they deal with no other ALS patients this difficult. I know there has to be similar stories out there. Nobody came be trapped in their own body and be happy go lucky. I do think he is extreme but not the exception. I would be interested to hear from others that have similar stories.