Momhasit
New member
- Joined
- Jan 2, 2015
- Messages
- 4
- Reason
- Loved one DX
- Country
- BR
- State
- Pr
- City
- Curitiba
Hi everyone,
Not sure where to start but I wish I can find some kind of help...
Mom was diagnosed a bit more than 2 y ago with bulbar onset.
It has progressed enormously in the past months to the point where she does not talk, eat and move anymore; just slightly her head and one of her hands.
Every week we see the progress and she is on bipap 24/7 and have a PEG for food and meds.
She does not want tracheo.
It breaks my heart and makes me mad for being unable to help her more but I dont know how to give her more comfort and help her to sufer less.
She is suffering, especially with the damn saliva and mucus in her throath.
At the moment, mucus in her troath is driving her crazy and me too. Every five minutes we have to dry her mouth and suction some of the mucus. Authough we have help, she only wants me and my aunt to do it ...but I am exausthed and it is difficult to be by her side all the time.
If other people will do it; she just stares at me, like asking for help and I just feel I have to do it. In 2 weeks I have to go back to work (2 h away) and I am not sure what to do. If I should give up my work.
Tonight she wouldnt let me get out of the room. After some saliva crisis and calming her down I left but with my heart broken as if something could happen and I wouldnt be there.
And that scares me because it feels the end is approaching. Yet, I am not sure what to expect anymore and I need to have some sleep to take care of her the whole weekend .
Thanks for reading and for sharing here.
Love
Sandra
Not sure where to start but I wish I can find some kind of help...
Mom was diagnosed a bit more than 2 y ago with bulbar onset.
It has progressed enormously in the past months to the point where she does not talk, eat and move anymore; just slightly her head and one of her hands.
Every week we see the progress and she is on bipap 24/7 and have a PEG for food and meds.
She does not want tracheo.
It breaks my heart and makes me mad for being unable to help her more but I dont know how to give her more comfort and help her to sufer less.
She is suffering, especially with the damn saliva and mucus in her throath.
At the moment, mucus in her troath is driving her crazy and me too. Every five minutes we have to dry her mouth and suction some of the mucus. Authough we have help, she only wants me and my aunt to do it ...but I am exausthed and it is difficult to be by her side all the time.
If other people will do it; she just stares at me, like asking for help and I just feel I have to do it. In 2 weeks I have to go back to work (2 h away) and I am not sure what to do. If I should give up my work.
Tonight she wouldnt let me get out of the room. After some saliva crisis and calming her down I left but with my heart broken as if something could happen and I wouldnt be there.
And that scares me because it feels the end is approaching. Yet, I am not sure what to expect anymore and I need to have some sleep to take care of her the whole weekend .
Thanks for reading and for sharing here.
Love
Sandra