Hello everyone, I need some help and I really hope you are able to help me. My little brother has the Low Gehrigs disease and he is suffering very much. I have never had about this disease before and I really don’t know how to deal with it. Everything started when my brother stopped talking. It was very difficult to understand him, that’s why we decided to take a white board and he was able to write everything that he needed or wanted to tell us. He is 17 years old and he always was very mature in his decisions and behavior.
Anyway it is very difficult now, everything changed and now it is like my brother is not my brother anymore. I have another sister, it’s a little bit difficult to live without parents. We always lived together without problems and it always was okay, we get used to live together, not it became a little bit more difficult, my sister is 26 years old, she is the oldest among us and I’m only 18.
I’m really trying to help my brother but it’s very difficult to do this. My brother doesn’t want me to help him, every time he is asking my sister to stay by his side all the time, to talk with him and to help him with all the possible problems. It’s becoming quite difficult because my sister can’t work anymore she need to stay home and she didn’t slept for 3 days. Every time she falls asleep my brother wakes her up and is becoming angry because she felt asleep. I was disappointed when I have seen the behavior of my brother and I really would like to help my sister, but I don’t know how.
My sister explained me that it’s okay to see him behaving like this; this is the disease that influences him so much and that’s why he is so angry and irritated. I observed that actually he is changing, he started to behave like a kid, and this is scaring me very much. Yesterday he cried literally at my sister like a little kid, telling her that she can’t sleep if he can’t do this too, he was so angry. I don’t know what to think.. In fact he has a lot of problems because of this disease, he can’t sleep normally during the night and that’s why my sister has to stay by his site all the time.
We tried to take a nurse in order to help him, to let my sister rest a little bit, but he didn’t want to have a nurse.. And my sister is falling apart. I feel like my sister will die someday just because she cannot have enough sleep. We also observed that he has his breathing affected and we are so worried. We know that people with such a disease don’t live for a very long time, but we have heard that he has some years to live. My sister is crying all the time because in just some months all the symptoms that he has started to intensify. At the beginning when he has had affected just the speech it wasn’t so scary for us, but now sometimes we feel like there is something wrong with his brain, we speak with him but there are some situations when he stays there like he doesn’t hear us, like he’s in other world.
Can somebody help me, please tell us what to do? How can I help my sister and my brother? He doesn’t want anyone except her, and I would like to replace her, this way she will be able to work and to sleep…