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rosec

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Last night my PALS woke me up and wanted to sit up be cause he said he felt like he couldn't breathe. So I had to get the hoyer lift and transfer him out of bed and into a chair. After using the cough machine a few times to clear up, he felt better, and I gave him some Ibuprofen before he went back to sleep.
I am used to being awoken by my PALS a couple times in the night to help him turn in bed. I can do that without turning on the lights and fall right back to sleep. In the past few weeks though, once every other night or so, he wakes me up and asks for some Ibuprofen/Acetaminophen because he was in some sort of pain. But last night it felt different, he looked more tired and distressed.
He switched from a BiPAP to Trilogy about 3 months ago. He has a PEG tube.
We are planning to get hospice involved in his care next week. What options should we consider about the breathing problem, if it is something hospice can provide?
 

Barbie

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Hi Rose,

Well that is a scary evening you had. Does he sleep with the Trilogy? you may want to look at that if he only uses it during the day. or maybe the setting need to be adjusted. I would call his RT and talk with them. my husband goes to bed and always either takes an Aleve or benedryl or both. his arms/shoulders hurt when he sleeps, I think because they just hang there in an awkward position on his side.

I hope Hospice can help you out. they should be able to help with any pain he is in. Every hospice is different--some have palliative care some don't, some kick you off if you don't progress fast enough, some don't, some know nothing about ALS, some do.
 

lgelb

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Ibuprofen and acetaminophen (and other NSAIDs) don't work that quickly. So if someone is waking up due to pain frequently, I would try the NSAID before bed (or a muscle relaxant or a low dose AED...whatever works). Usually, a consistent approach works best.

I would check the Trilogy data card and adjust the settings as needed but also when he says he needs to get up, try changing the bed position so his back and head are supported, and using the machines in bed, rather than perhaps further sapping energy/sleep with a transfer. And maybe try elevating the head/back/legs more before he goes to sleep.

Those using Benadryl or any generic diphenhydramine product (also applies to the "PM" products) should be aware that this agent is sedating and can further impair breathing. Drugs like tizanidine and gabapentin are as well, of course, but less so @ the low doses typically used for pain secondary to ALS. When you buy a packaged sleep aid, you are buying a "regular" dose.
 

KrisS

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You might consider getting a hospital bed so you can elevate him enough to relieve the stressful breathing. Hospice should be willing to provide one for him. It really helps my PALS.
 

lgelb

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Sorry, I was assuming he had a hospital bed...but even beyond that, we find that all of the above helps.
 

Katie C

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I was also going to suggest the hospital bed... it can be a huge help!
 

rosec

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Thank you all for the suggestions. We do have a hospital bed. But sometimes, he says getting his torso upright by raising the bed does not help him.
We signed up with hospice last week. He feels better about the 400 mg of Ibuprofen at bedtime, every night, now that the hospice nurse and doctor have given him the ok. They also gave us a comfort pack with a few other meds that he can use as needed.
 
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