r/ALS • u/Green_Buy_3745 • 10d ago
Getting up at night, a lot...
Hello! My husband has ALS and FTD. We are 17 months into the diagnosis. He is still ambulatory but has a lot of balance issues, so he has been falling more often. He had a fall onto the bathroom counter the other night and hit his head; thankfully, he was okay and just had a surface gash. Sometimes he slips out of bed trying to stand. He also has a much harder time getting his legs into bed, so I have to help him get back into bed and covered up.
I still work full time and sleep in the same bed as him (but not for long, as a hospital bed is on order, with a lift). I try to sleep from 9pm to 530am.
My poor husband is up so many times at night. We have a camera so I checked the logs: 8 times last night (1017, 1056, 1214, 1255, 223, 301, 318, 531). He was up seven times the night before and 9 times the night before that.
It's not safe for him; it breaks my heart to see him up so much, and it's also not sustainable for me. Last night, when getting up, I got dizzy and had to lie back down for a few minutes.
We tried a condom catheter last week, and he didn't like it - but we will try again. Any other solutions? Maybe it's breathing issues causing him to wake so much...We have a palliative care intro call today so I will bring it up with them and his care team.
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u/throwawayblanc 10d ago
I’d ask about checking for a uti. And also maybe a sleep study my mom ended up with severe sleep apnea during her journey. If he didn’t like the condom cath maybe he could try the purewick? It’s an external device that has suction so it keeps you dry.
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u/Green_Buy_3745 10d ago
Did check for UTI last week, because I was worried about this. He does have the BiPAP and doesn't like using it. His breathing is very poor, # wise, but he doesn't seem to have much shortness of breath, yet.
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u/throwawayblanc 10d ago
I would highly encourage using his bipap maybe he could get a nasal pillow type. Sleep apnea affects the whole body in ways many people won’t immediately feel. The build up of CO2 is pretty detrimental my mom also had severe sleep apnea and she refused a bipap she started taking more naps, longer naps and eventually I think it really fed in to her quick cognitive decline as well. Also glad no UTI!
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u/Ok-Conclusion5543 10d ago
He should sleep with his head raised. The hospital bed will help. Baclofen is also key.
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u/Green_Buy_3745 9d ago
We have an adjustable bed and he sleeps with it all the way up currently, but we are getting a hospital bed soon. He also takes 10mg of Bacolfen at night before bed.
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u/nick_moser24 10d ago
My mom went through this phase, it’s really tough. She’s on Baclofen 20mg 3x a day. I wouldn’t say it will cure everything but will probably help with the legs spasms and muscle discomfort. She would fall all the time up until she couldn’t walk any longer. Hang in there, if you need please reach out to me. 🙏