Bhope1006
New member
- Joined
- Feb 3, 2022
- Messages
- 2
- Reason
- CALS
- Diagnosis
- 08/2021
- Country
- US
- State
- TX
- City
- Magnolia
Good evening everyone,
Please excuse the long background info, I wanted to give a clear understanding of our circumstances. My father in law is 65 and was diagnosed with Bulbar onset ALS about 7 months ago but has had symptoms for a total of about 16 months. Due to a variety of choices and circumstances he is currently only on Rivuzole, Tudca, and a variety of other supposedly helpful supplements to slow progression. He had considered Radicava infusions but has decided not to go ahead with them.
He has stated that he does NOT want any tubes, no feeding tubes or breathing tubes, he doesn't want to prolong the inevitable. He has had significant increases in his symptoms recently and my husband and I are concerned that he is nearing the end but have no idea what it is going to look like. He is currently still able to eat and drink, he eats very slowly and still has choking episodes and is now far more limited in the foods he feels he can eat than he ever has been.
He seems to be breathing okay, though the concern is that he is having a much harder time clearing his secretions, he has a lot of phlegm and has been up at night sitting up trying to clear them from his throat. This is resulting in him napping more during the day which is highly unlike him. He has no feeling in his tongue and has lost feeling in one of his lips and moving to his throat. He drools and notices sometimes and wipes it away, he has fasciculations in various parts of his body. He is now incredibly difficult to understand when he speaks, sometimes we can understand a word here and there but it is getting significantly more difficult to communicate.
We have just printed DNR paperwork for him to sign so that if something happens suddenly, we are able to legally respect his wishes. I am an RN and he and my mother in law moved in with my husband and I to be able to help care for him as things progressed but we have no idea what to expect next. I know no one can give us a time line but can anyone shed light on what their loved ones passing looked like if they did not have any interventions such as feeding or breathing tubes? I cannot seem to find anything to help us try to prepare for this. Thank you in advance!
Please excuse the long background info, I wanted to give a clear understanding of our circumstances. My father in law is 65 and was diagnosed with Bulbar onset ALS about 7 months ago but has had symptoms for a total of about 16 months. Due to a variety of choices and circumstances he is currently only on Rivuzole, Tudca, and a variety of other supposedly helpful supplements to slow progression. He had considered Radicava infusions but has decided not to go ahead with them.
He has stated that he does NOT want any tubes, no feeding tubes or breathing tubes, he doesn't want to prolong the inevitable. He has had significant increases in his symptoms recently and my husband and I are concerned that he is nearing the end but have no idea what it is going to look like. He is currently still able to eat and drink, he eats very slowly and still has choking episodes and is now far more limited in the foods he feels he can eat than he ever has been.
He seems to be breathing okay, though the concern is that he is having a much harder time clearing his secretions, he has a lot of phlegm and has been up at night sitting up trying to clear them from his throat. This is resulting in him napping more during the day which is highly unlike him. He has no feeling in his tongue and has lost feeling in one of his lips and moving to his throat. He drools and notices sometimes and wipes it away, he has fasciculations in various parts of his body. He is now incredibly difficult to understand when he speaks, sometimes we can understand a word here and there but it is getting significantly more difficult to communicate.
We have just printed DNR paperwork for him to sign so that if something happens suddenly, we are able to legally respect his wishes. I am an RN and he and my mother in law moved in with my husband and I to be able to help care for him as things progressed but we have no idea what to expect next. I know no one can give us a time line but can anyone shed light on what their loved ones passing looked like if they did not have any interventions such as feeding or breathing tubes? I cannot seem to find anything to help us try to prepare for this. Thank you in advance!
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