codyclan
Distinguished member
- Joined
- Jan 26, 2014
- Messages
- 402
- Reason
- Lost a loved one
- Diagnosis
- 02/2014
- Country
- US
- State
- VA
- City
- Round Hill
My Pals is steadily losing weight -- 40 pounds since diagnosis in Feb 2014. He still eats by mouth but it is becoming more difficult. I have modified food textures, lots of soups, soft foods and I use the stick blender on many things. He still indulges in an occasional cookie and few chips on occasion. Lots of throat clearing when he eats and he has had a few episodes of choking/gagging. I say gagging, because it appears that he is choking but he keeps himself calm and can breath through his nose although food is stuck in his throat. His cough is not very powerful, but he has, to this point, eventually able to clear his throat.
Our clinic doc has been saying for the last six months that if he wants a tube, it is definitely time. His FVC is at 50%. Doc said he would order a bi-pap. We already have a cough assist, which he hates but still uses semi-regularly. He is saying that he is not at all sure that he wants a tube ever, and does not want to discuss further. He also says that he doesn't want a bi-pap, even though I think it will make him more comfortable.
Here is my quandary. I feel that if I push it and force the continued discussion, he will agree for me. But I don't want him to agree to this for me, necessarily, and yet of course, I do. I don't know where that line is. He has always had a bit of a stubborn streak and if I push some things he ends up being grateful (like the electric wheelchair and lifts on the toilet), but on the other hand, he was clear from the beginning that he didn't want a vent or other measures. The tube was always a gray area for him. In the beginning he said he might consider it if eating became too much of a problem, but now is saying that he doesn't want it or doesn't want to talk about it yet(emphasis on 'yet' is his) Doc is respectful and doesn't push.
I realize that we may have already passed the point of no return. His speech is still mostly intelligible and he can still mostly transfer independently, walk a few steps in the house and, of all things, folds laundry (it takes him forever, but I am grateful, none the less!).
Anyway, just looking for some feedback or insight.
Tracy
Our clinic doc has been saying for the last six months that if he wants a tube, it is definitely time. His FVC is at 50%. Doc said he would order a bi-pap. We already have a cough assist, which he hates but still uses semi-regularly. He is saying that he is not at all sure that he wants a tube ever, and does not want to discuss further. He also says that he doesn't want a bi-pap, even though I think it will make him more comfortable.
Here is my quandary. I feel that if I push it and force the continued discussion, he will agree for me. But I don't want him to agree to this for me, necessarily, and yet of course, I do. I don't know where that line is. He has always had a bit of a stubborn streak and if I push some things he ends up being grateful (like the electric wheelchair and lifts on the toilet), but on the other hand, he was clear from the beginning that he didn't want a vent or other measures. The tube was always a gray area for him. In the beginning he said he might consider it if eating became too much of a problem, but now is saying that he doesn't want it or doesn't want to talk about it yet(emphasis on 'yet' is his) Doc is respectful and doesn't push.
I realize that we may have already passed the point of no return. His speech is still mostly intelligible and he can still mostly transfer independently, walk a few steps in the house and, of all things, folds laundry (it takes him forever, but I am grateful, none the less!).
Anyway, just looking for some feedback or insight.
Tracy