My hb is in the final days or weeks of bulbar ASL/FTD. The meds he is on are a mixed blessing. Anyone who has been through this have any suggestions? I want him to be as comfortable as possible but still hate seeing him out of it.
* Lorazepam, every 4 hours - helps with anxiety over the coughing/choking episodes. It makes helping him walk much harder due to drowsiness. He can't walk alone now at all.
* Scopolamine patch - dried up the saliva to help with coughing - adds to drowsiness
* Atropine drops - also dries up the saliva
* Risperdol - to help with sleep - haven't tried it yet, seen lots of scary warnings but would love to have him sleep through the night. He awakes every two hours trying to turn over but his muscles are about gone so it's terribly difficult.
He's on in-home hospice and I can call the nurse anytime. They don't know ALS or FTD like everyone here does. It's all so scary. He's barely alert anymore, so sad.