Sleeping ideas?

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Senior member
Aug 22, 2022
Lost a loved one
Last night was not a good night for anyone except Lucy the cat who could sleep through a storm. This week Tom has declined, much weaker. He cannot find a comfortable way to sleep. He does not use the hospital bed because he says he cant get in it and can't turn on his side. I said...i can help you get in and turn. He said no. So last nightbi slept in the hospital bed so i could be close by. Tom was up most of the night. He slept in a chair with his head on a pillow on table, or in the recliner. The recliner is manual.
I asked him if he wants to sleep on floor with head elevated, no.
I have a power recliner coming in a week.
sleep is so important for both of you. There are a lot of tweaks to make the hospital bed comfortable depending on his needs. Of course he needs to want it to work. A different mattress? An overlay? Strategically placed pillows or wedges? Finding the exact right angles for head and feet ?
My husband takes an anti depressant and xanax 2x a day. I believe this helps with sleep. We have the type of mattress where the air pressure alternates thus reducing the need to feel that one has to turn so often. Several PALS on the forum have used this type mattress. It might take some getting use to, but my husband liked it right away. Is your PALS breathing okay. Does he find that he breathes better in the recliner?
Why can't he get in or out of the hospital bed?
My Chris had a period of time (months) he was up and down all night. We were both a wreck.
Then he started sleeping mostly in the recliner chair, but was still awake much of the night.
Finally, he agreed to start using the hospital bed and taking an antidepressant and sleep returned for us.
The key for him was that we set up the lounge room for him so he was in the middle of everything. We also had an alternating mattress, and that was key for him as he could not turn himself.
It can be really hard to accept and adjust to the changes of ALS, I hope you can work through these together and find a way that works fairly quickly.
I have suggested an antidepressant several times. His PCP had explained that it may provide a deeper sleep. But tom said no.
Tom agreed to melatonin and chamomile for tonight.
And. Whoopee the recliner showed up today early. That will be a big help.
Lucy the cat is oblivious and has no opinion. She is napping on the hospital bed right now.
Sounds like the first hurdle is getting into the hospital bed. Sooner or later he will have to accept a Hoyer or ceiling lift. Understandably, that is not something he "wants." Everyone comes to the realization differently that it is a tool to use other aids, like a bed.

I would make sure he has had the full benefit of the bed/any supplementary meds as is before tinkering with the mattress.
To clarify...he cannot get into the hospital bed because he cant lift his legs and swing them in. He has bulbar onset and breathing is precarious. If i lift his legs he says he cant breathe. We probably need more practice.
You can lower the bed to assist with getting in and we found it easier to get out with the bed higher.
But does that mean he can't get into any bed?

We got my husband onto the antidrepressants because it would help dry up the saliva ...
I find it hard to get comfortable but meds help me sleep even when I'm in pain. My lift chair helped my back so much and I've always had an adjustable bed. It's not a hospital bed but, as soon as I need one, I'll get it.

If he can't breathe when you raise his legs, is he on BiPap when making the transfer? A hospital bed should be able to accommodate many positions and make him comfortable. As others say, the mattress might need to be switched out until you find a comfortable one for him.

I hope you both find a way to get good rest. When I don't sleep, everything is worse.
This is a very hard stage in the journey of ALS. During this time we didn't know PALS had ALS and I called my doctor complaining of shortness of breath.....for me.....I even had to take a stress test. But it was just my anxiety. Once my PALS was in a power chair and using a hoyer lyft my anxiety came down quite a bit.

Does your PALS use a Bi-Pap...even if only at night. If he is short of breath making the transfers it might be time to look at his respiratory status again?
So I sleep every night in a power recliner. was a side sleeper, now back . start out with head back, then raise feet, then recline the back. all about controlling the saliva
Jhett. The hospital bed is gone. That space now used by hoyer type lift. Tom has a fully functioning power recliner. Sleeps reclined on back. He is happy. Hated the bed.
I have been given a prescription for Xanax. I take one .5mg at bedtime... it works until about 4AM.
I wake up wide awake, I go out to my desk, check the computer for a while then go back to bed.
Sometimes that works. I don't dream until 4AM but if I do go back to sleep I have weird dreams.
Just part of it all I guess. I do have an elevated bed but I miss sleeping on my side flat. Once and
a while I do but...

I know... some say taking Xanax for sleep is not suggested but it works for me.
I take xanax for sleep as well. I have heard it is not recommended but Trazodone is too strong for me and other sleeping aids either don't work or don't seem safe to me. At least this works ....most of the time.
Well, the objection I've sometimes heard about Xanax is that it's habit forming. But that isn't an issue for us!

I use Sonata (Zaleplon). It has a very short half-life. When I had to do parenting things in the middle of the night (e.g. night terrors), I was able to take it at 4 am and still get up at 7, alert and able to function. Zaleplon is the shortest half-life of the "three Z's" (Zaleplon, Zolpidem, and Eszopiclone -- also known, but in a different order, as Lunesta, Ambien, & Sonata). I tried another one of them that lasts longer but it tasted terrible. I forget which one it was.

There is something that can be used in place of Xanax for anxiety -- Buspirone (Buspar). It's not such a heavy hitter. My son, who has Tourette Syndrome, used it for awhile. It was helpful.
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