CALS sleep (stop laughing!)

[Nuts]

It is wwwaaaayyyy too early for me to be sleep deprived! I wake at least three times a night, which is very hard on me. I've always been an 8 hour a night sleeper. Oh boy am I in trouble!

I wake when he has trouble turning over. He can do it, but it's difficult and he gets tangled, so I pull the blankets out from under him and help him turn. I wake if he pulls the face mask off to take a drink of water, or when he sits up to answer nature's call. He doesn't really doesn't need me yet for all of this, but I just can seem to condition myself away from waking. I've even tried sleeping pills. I still wake and feel even worse in the moring (groggy for half the day). I've tried naps during the day (I'm fortunate to not be working--what an upside down situation we have here), but then it seems that I get nothing done during the day.

I got a blanket lifter, but have trouble keeping it in place between the mattress and platform. We have a sleep number and he sleeps with his feet elevated. Has anyone found a blanket lifter that sits on the floor? This is the sort of thing HE would have made for me...

I'm considering sleeping a night in another room, but sooooo hate to do that. If he's in bed I want to be there with him!

I also wonder how soon we should consider a mattress that will turn him. He's still rather mobile (with the PWC), so it seems early, but I'm afraid the ALS compromised the healing of those back muscles after surgery. ARGH! We had someone out yesterday to survey for a track system between the bedroom and bathroom--trying to stay ahead. Right now he seems ok with more equipment but it's starting to get to me.

I just want to stop time...

Oh what a whiner I am. Things are good now. I know I'm rambling. I think the fall he took this morning shattered my calm. ok, enough venting, back to ironing his Polos, because he's very particular and it's the least I can do...

 

[affected]

{{{hugs}}}

It's no laughing matter, the interrupted sleep had a huge effect on me and Chris.

I always felt guilty that I finally slept better when he stopped sleeping in our bed. It wasn't that I was happy to be apart from him, but he was so restless all night long.

 

[skipper66]

This might seem like a weird solution. But, could you maybe alternate. Maybe, every other night sleeping in a separate room. That way maybe you could get some rest occasionally. We set up a baby monitor in the room when my mom had cancer and my parents had separate rooms. But, any noise of moment then would probally disturb your sleep as well. Hugs, Kim

 

[djbailey]

I can barely hear Micky lying next to me when she needs me with the mask on and the breathing machine (astral) running. Don't think I would hear her over the monitor we have if I was sound asleep. If he can still call out then that might be the solution. Right now ,I hear her, fix what I need to (soft night light only) and back to sleep. Coming from another room would really wake me up.

 

[MaxEidswick]

>I've even tried sleeping pills.

try benedryl & sleepy time tea and don't stay up or turn on bright lights. stay off the computer!

 

[gooseberry]

Nuts, When I complained about this very problem, the neuro I see gave me clonazapem to take at bedtime for sleep. I don't get a hangover effect from it and I sleep hard...yet I do awaken if something is loud or steve is really flopping around a lot.

 

[Nuts]

Steph, hey, we could just share the meds! My GP offered something to sleep during my last visit and stupid me, I turned it down for fear I wouldn't hear him if he did need me. DUHHH.
Max, I LOVE Sleepy Time Tea--never thought about mixing it with Benedryl, but why not? If something doesn't work I'll be forced to head down the hall.
dj, he actually suggested that I move to another room so I can sleep and I told him I would never do that, for just the reasons you mention. I know sleep will become a distant memory at some point, but I've got to stop rushing things . The audio on our baby monitor is pretty good--the trick will be filtering out anything other than his voice calling me. I REALLY don't want to give him a bell...

 

[smoochiegal]

Nuts,
I could have written your post.
My sweet man is now sleeping in the hospital bed in our room and yet I hear every move he makes. I, too, need my sleep. He has never been a great sleeper and has always been up WAY before me. So now, he is often up in the night not being able to breathe well, and if he does sleep in it's until like 4 am! I have to help him get his robe on, (he can still walk fine) make him coffee, help him drink his coffee .... and by then I am up. I try to sleep in the day as well but again, then nothing gets done.
I also worry as this is just the beginning and it will get much worse... those are the thoughts that scare me. I guess this is why we take a day at a time, right?
I have no words of wisdom, just understanding. Right now, I could use a hotel room for just 24hours to get sleep where I don't feel like I am having to keep one ear open all night.
Hugs and hopes for a good night sleep tonight!
Cheryl

 

[Nuts]

Cheryl, little did we guess that one day we'd be wishing for a hotel room so we could sleep alone!

Becky

 

[maryhahnward]

I watch the ceiling fan when I wake, the dang alarm on the astral goes off when the mask shifts and wakes me but not T. T is nearly deaf. The alarm is on the quietest setting, I use one of those sound machines to drown out noises too and I still hear the alarm so since the machine puts out some light I've taken to watching the ceiling fan, it's kind of like counting sheep. I've never counted sheep to sleep but it seems to be the same conceptually speaking. Oh, and it works watching the fan. I just discovered it the other night.

As for the alarm going off I know i need to figure that out but it's a long story and I'm working on it.

 

[Nuts]

Oh yes, we have that hearing issue here also. When he takes out his hearing aids he hears nothing. I've become his alarm clock! We have no alarms set on the Trilogy yet, but if his masks shifts and starts leaking more air, I hear it. I'd forgotten about that little joy... For that matter, when his apnea kicks in and the Trilogy steps up the volumn, I hear the change. I guess he's right about me hovering...I'm even doing it in my sleep!

We used to use the ceiling fan all the time, but now it bothers him. I'm not sure how it can make him cold when it's in reverse, but I pile on the blankets and he prefers not to.

 

[HeatherFeather]

It is wwwaaaayyyy too early for me to be sleep deprived! I wake at least three times a night, which is very hard on me. I've always been an 8 hour a night sleeper. Oh boy am I in trouble!

I wake when he has trouble turning over. He can do it, but it's difficult and he gets tangled, so I pull the blankets out from under him and help him turn. I wake if he pulls the face mask off to take a drink of water, or when he sits up to answer nature's call. He doesn't really doesn't need me yet for all of this, but I just can seem to condition myself away from waking. I've even tried sleeping pills. I still wake and feel even worse in the moring (groggy for half the day). I've tried naps during the day (I'm fortunate to not be working--what an upside down situation we have here), but then it seems that I get nothing done during the day.

I got a blanket lifter, but have trouble keeping it in place between the mattress and platform. We have a sleep number and he sleeps with his feet elevated. Has anyone found a blanket lifter that sits on the floor? This is the sort of thing HE would have made for me...

I'm considering sleeping a night in another room, but sooooo hate to do that. If he's in bed I want to be there with him!

I also wonder how soon we should consider a mattress that will turn him. He's still rather mobile (with the PWC), so it seems early, but I'm afraid the ALS compromised the healing of those back muscles after surgery. ARGH! We had someone out yesterday to survey for a track system between the bedroom and bathroom--trying to stay ahead. Right now he seems ok with more equipment but it's starting to get to me.

I just want to stop time...

Oh what a whiner I am. Things are good now. I know I'm rambling. I think the fall he took this morning shattered my calm. ok, enough venting, back to ironing his Polos, because he's very particular and it's the least I can do...

Hey Becky,

It's really rough when we are sleep deprived. Seems like we have a hard time functioning during the day and are just literally dragging our butts

Ron usually wakes me up to turn him or fix the blankets, or give him a sip of water or the urinal about three or four times a night and I get to sleep right after, so I'm lucky so far except for two nights this week when he was waking me up about every hour for something and the last time it was around 4 a.m. and by then I was wide awake so I got up and that's when I was so exhausted that I had a kind of breakdown and crying fit. Well last night we went to sleep and he slept right through until 8 a.m. without even a snore! Well wouldn't you know that I kept waking up every bloody hour expecting Ron to call out to me to help him? Sheesh!

 

[Nuts]

Heather, I think you've hit the nail on the head. If I'd only wake when he needs me and not at every little sound, I'd be fine. It's my head I need to work on at this point and condition myself to stop anticipating and instead just react at night. Maybe those nights when they sleep through are worse for use because we just KNOW that the next need will come soon, since it's been so long, so we keep ourselves awake waiting for it. Someone smart once told me that I can only control my responses to people and events, I guess that applies here as well. By the way, if we are dragging our butts so much, why done they wear down and get smaller?

 

[gooseberry]

With the trilogy machine the alarms for some things can be turned off. I took a dark towel and covered the screen so the room wasnt lit like the 4th of July. Resp company will let us sign a waiver so other alarms can be turned off.

 

[smoochiegal]

Cheryl, little did we guess that one day we'd be wishing for a hotel room so we could sleep alone!

Becky

Haha.. you are so right Becky! lol