- Joined
- Nov 12, 2015
- Messages
- 657
- Reason
- CALS
- Diagnosis
- 11/2015
- Country
- US
- State
- CA
- City
- San Diego
We had a video visit with the ALS Clinic 2 weeks ago. There were a number of things that came out of that visit that we are now dealing with.
First, and probably most critical, was the doctor's concern about a feeding tube. He told us he wanted to see us go forward with a feeding tube within the next month or two. My PALS has been resistant to admitting he needs anything like this at this point. He is still eating by mouth, but is starting to have difficulty swallowing pills (I crush them and give them to him with applesauce). His first question of the doctor was "can they take it out when I get well." Last night he told me he doesn't want the tube. I don't think he really doesn't want the tube, I think he doesn't want to think about it. Meanwhile he was trying to drink his Leap2BFit yesterday and having difficulty. I explained to him that I think it is important for him and that refusing the tube is a decision that he can make, but he needs to understand the consequences of that decision and not just make it because he doesn't want to deal with it. He then nodded and said that his cousin, who had oral cancer, had a feeding tube.
Second, he had a video visit with the pulmonologist after the clinic visit. The pulmonologist put his bipap settings up but he was uncomfortable with the high settings. We discussed it with him and he agreed that as long as my PALS is comfortable and feels that he is getting enough support that what we are doing is fine. Then he brought up the trach decision. My PALS has also been avoiding discussing this. After the call he broke down a little. He hasn't wanted to face the nature of his illness.
I am very concerned about his respiratory weakness and want to do the feeding tube as soon as possible. I know it will be difficult for him but I think it is for his benefit. I'm just waiting for the team to call me to set up the appointment.
Then on Friday his caregiver was bathing him and said she noticed a raw spot on his tailbone. I'm worried about bedsores given his lack of mobility. He has been sleeping in his lift chair and not really able to move much; I asked him to sleep in the bed on Friday night which he did but told me the chair is more comfortable. I washed the area and put some antiseptic cream on it but don't know if that's going to help.
Anyway, last March his progression seemed to speed up, and I feel like I am in another stage like that now. His speech is very muddled and within the past month he needs to be spoon fed more often than not. I am now brushing his teeth for him and he struggles more when we don't have the bipap on (such as during meals or bathing). He does have a sip mode but has been resistant to use it. I'm also concerned about his ability to communicate; talking has always been a big joy for him. As the previous caregiver said, he "talked her ear off". He doesn't learn new skills easily so I worry about him learning an assistive communication device. Meanwhile he is still talking a lot but is so much harder to understand. I know I should take one day at a time...but that's easier said than done.
V
First, and probably most critical, was the doctor's concern about a feeding tube. He told us he wanted to see us go forward with a feeding tube within the next month or two. My PALS has been resistant to admitting he needs anything like this at this point. He is still eating by mouth, but is starting to have difficulty swallowing pills (I crush them and give them to him with applesauce). His first question of the doctor was "can they take it out when I get well." Last night he told me he doesn't want the tube. I don't think he really doesn't want the tube, I think he doesn't want to think about it. Meanwhile he was trying to drink his Leap2BFit yesterday and having difficulty. I explained to him that I think it is important for him and that refusing the tube is a decision that he can make, but he needs to understand the consequences of that decision and not just make it because he doesn't want to deal with it. He then nodded and said that his cousin, who had oral cancer, had a feeding tube.
Second, he had a video visit with the pulmonologist after the clinic visit. The pulmonologist put his bipap settings up but he was uncomfortable with the high settings. We discussed it with him and he agreed that as long as my PALS is comfortable and feels that he is getting enough support that what we are doing is fine. Then he brought up the trach decision. My PALS has also been avoiding discussing this. After the call he broke down a little. He hasn't wanted to face the nature of his illness.
I am very concerned about his respiratory weakness and want to do the feeding tube as soon as possible. I know it will be difficult for him but I think it is for his benefit. I'm just waiting for the team to call me to set up the appointment.
Then on Friday his caregiver was bathing him and said she noticed a raw spot on his tailbone. I'm worried about bedsores given his lack of mobility. He has been sleeping in his lift chair and not really able to move much; I asked him to sleep in the bed on Friday night which he did but told me the chair is more comfortable. I washed the area and put some antiseptic cream on it but don't know if that's going to help.
Anyway, last March his progression seemed to speed up, and I feel like I am in another stage like that now. His speech is very muddled and within the past month he needs to be spoon fed more often than not. I am now brushing his teeth for him and he struggles more when we don't have the bipap on (such as during meals or bathing). He does have a sip mode but has been resistant to use it. I'm also concerned about his ability to communicate; talking has always been a big joy for him. As the previous caregiver said, he "talked her ear off". He doesn't learn new skills easily so I worry about him learning an assistive communication device. Meanwhile he is still talking a lot but is so much harder to understand. I know I should take one day at a time...but that's easier said than done.
V