Old 12-30-2010, 07:07 PM #1 (permalink)
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Question End stage meds? ALS and FTD

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.
Many thanks.
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Old 12-30-2010, 08:25 PM #2 (permalink)
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Default Re: End stage meds? ALS and FTD

PC, I'm so sorry. Let me ask ... from your post it seems like he's calm and comfortable? If that's the case, I wouldn't mess with the meds. If he seems to be hallucinating (FTD will do that.. either audio or visual sometimes both) anti-psychotic medication can help.. Glen took Seroquel. If he's agitated, there's anti-anxiety meds that can help. And of course, if it's really final stage and he seems to be in pain or struggling to breath, morphine will help him be more comfortable. Talk these over with the hospice nurse if you need to. Keeping you in our thoughts. And try to keep in mind that if he IS mostly out of it.. this time is harder on you than on him.. remember good self care including rest and hydration.
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Old 12-30-2010, 11:44 PM #3 (permalink)
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Default Re: End stage meds? ALS and FTD

I have no idea on these - but I have heard of getting submandibular injections for the salivacontrol. I only know of them because a radiologist I work with does it with ultrasound guidance (department I work in.) I know it is temporary - but if what you say is true it doesn't sound like he would need more than 1 treatment. Not painful from what I hear.
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Old 12-31-2010, 01:42 AM #4 (permalink)
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Default Re: End stage meds? ALS and FTD

PC I will keep you both in my prayers.
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Old 12-31-2010, 07:17 AM #5 (permalink)
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Default Re: End stage meds? ALS and FTD

PC- very sorry you guys are going through all of this. I will keep you in my thoughs.
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Old 12-31-2010, 05:41 PM #6 (permalink)
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Default Re: End stage meds? ALS and FTD

Thanks everyone. Katie, good advice, I'm going easy on the lorazepam. Now that I put a new scopolamine patch on and am giving him only ice, broth or lemonade chips to eat, he's choking way less. He loved his ice cream but I realized it only pooled in his throat and was choked, drooled or coughed back out. It's so hard to not "push" food. No peg was a choice made long ago and I have no regrets. The risperdol didn't work either. He woke up a couple hours later and wanted to join us out in the living room. We helped him out to his recliner and all watched a movie together!
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Old 12-31-2010, 07:55 PM #7 (permalink)
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Default Re: End stage meds? ALS and FTD

Treasure those moments PC. Hang in there.
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age, als, als and ftd, anxiety, bulbar, choking, end stage meds, ftd, hospice, love, meds, night, sad, saliva, sleep



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