- Joined
- Dec 2, 2021
- Messages
- 6
- Reason
- CALS
- Diagnosis
- 11/2021
- Country
- US
Hello. It's been a while since I've been on this forum. I was really hoping we could turn this thing around, but no... Things have really gotten serious. My husband has Bulbar and is progressing. He really struggles with the mucus. It's in his chest pretty bad I think. He is incredibly stubborn and doesn't really tell me what's going on, so I only know from observation. He is constantly clearing his throat and beginning to cough. He still has a voice but it's incredibly hard for him to speak clearly. It's becoming more and more difficult to understand him. I've urged him to do the text to speak app but he won't do it. I think if he thinks if he starts using these tools given he is giving into the illness.
It's really beginning to affect us (our marriage). I try so hard to help but he is just mean sometimes. I know he's angry. Does this get any better? We have recently really started arguing over petty things. He has never been like this. Always been so incredibly patient and loving towards me. It's very difficult to help him and I've become very reluctant to talk to him about anything. He still won't tell me what his end of life wishes are. I'm basically on my own. I'm wondering if the disease is affecting his personality. Any thoughts on how to handle this would great.
It's really beginning to affect us (our marriage). I try so hard to help but he is just mean sometimes. I know he's angry. Does this get any better? We have recently really started arguing over petty things. He has never been like this. Always been so incredibly patient and loving towards me. It's very difficult to help him and I've become very reluctant to talk to him about anything. He still won't tell me what his end of life wishes are. I'm basically on my own. I'm wondering if the disease is affecting his personality. Any thoughts on how to handle this would great.