AKH 3612
New member
- Joined
- Oct 17, 2012
- Messages
- 4
- Reason
- Loved one DX
- Country
- US
- State
- NC
- City
- Rougemont
Hi, I could use some advice and tips.
My dad was diagnosed in March with ALS. He is to the point where his speech is very slurred and hard to understand, especially to outsiders. He gets choked easily on liquids and certain foods. And my family and I have noticed signs of dementia (I don’t’ think we can leave him by his self during the day for much longer).
I went with him and my mom to the doctor the other day and we were told he has Bulbar ALS. They brought up the topic of having a feeding tube or peg put in. My dad adamantly told them that he did not want any holes put in him, but I am not sure his mind was in the right state for making decisions. Also, his respiratory scores went down from 79% to 54% so the therapist told him he needed to start using a PAP machine. This news turned his mood completely upside down. I don’t know if it was the low respiratory scores and the need for a machine, the thought of a feeding tube (peg?), or if it was a side effect of the Bulbar, but he was in tears by the time we left the doctors. I have never seen my dad cry like he did when we were leaving.
I know my family and I are not the only ones going through this and that things could be a lot worse, but I guess I am feeling a little over whelmed by all of this. There are so many things that I don’t know about. I’m not sure if I should keep bringing up the feeding tube (peg?) or if I should just drop the topic. I also need to know how to go about getting power of attorney? Is there an inexpensive way? Should my mom have the house/cars/ all of it put into her name?
My family and I would greatly appreciate any advice or tips that we could get at this point.
My dad was diagnosed in March with ALS. He is to the point where his speech is very slurred and hard to understand, especially to outsiders. He gets choked easily on liquids and certain foods. And my family and I have noticed signs of dementia (I don’t’ think we can leave him by his self during the day for much longer).
I went with him and my mom to the doctor the other day and we were told he has Bulbar ALS. They brought up the topic of having a feeding tube or peg put in. My dad adamantly told them that he did not want any holes put in him, but I am not sure his mind was in the right state for making decisions. Also, his respiratory scores went down from 79% to 54% so the therapist told him he needed to start using a PAP machine. This news turned his mood completely upside down. I don’t know if it was the low respiratory scores and the need for a machine, the thought of a feeding tube (peg?), or if it was a side effect of the Bulbar, but he was in tears by the time we left the doctors. I have never seen my dad cry like he did when we were leaving.
I know my family and I are not the only ones going through this and that things could be a lot worse, but I guess I am feeling a little over whelmed by all of this. There are so many things that I don’t know about. I’m not sure if I should keep bringing up the feeding tube (peg?) or if I should just drop the topic. I also need to know how to go about getting power of attorney? Is there an inexpensive way? Should my mom have the house/cars/ all of it put into her name?
My family and I would greatly appreciate any advice or tips that we could get at this point.