NolaJen
Member
- Joined
- Oct 21, 2013
- Messages
- 13
- Reason
- Lost a loved one
- Country
- US
- State
- La
- City
- New Orleans
I posted a long time ago about my dad. He does not have MND, they still think he has CIDP (although an outlier variant of it). There are some differences in his disease and ALS, but ultimately they look very similar.
He is unable to move any part of his body, he is on a trilogy home vent 24/7. He was recently in the ICU for mild pneumonia and is steadily declining.
The doctors are talking about trach and peg. I am heartbroken. I don't know what he wants, he seems to change his mind about it fairly often. I know he doesn't want to die, but his quality of life is so poor.
I don't know anyone in my life who has been through this. I'm scared a trach and peg will make things worse. He is still able to talk, although his breathing limitations have impacted his ability to speak.
Any advice? I know we are nearing the end. I don't want to see him suffer anymore, but I also don't like the alternative, which is life without him. I'm so sad.
He is unable to move any part of his body, he is on a trilogy home vent 24/7. He was recently in the ICU for mild pneumonia and is steadily declining.
The doctors are talking about trach and peg. I am heartbroken. I don't know what he wants, he seems to change his mind about it fairly often. I know he doesn't want to die, but his quality of life is so poor.
I don't know anyone in my life who has been through this. I'm scared a trach and peg will make things worse. He is still able to talk, although his breathing limitations have impacted his ability to speak.
Any advice? I know we are nearing the end. I don't want to see him suffer anymore, but I also don't like the alternative, which is life without him. I'm so sad.