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hn7609

Distinguished member
Joined
Sep 7, 2011
Messages
121
Reason
PALS
Diagnosis
08/2011
Country
US
State
Virginia
City
Moseley
I’ve slept quite comfortably in a hospital bed until about 6 weeks ago when I became very uncomfortable in the bed. My discomfort coincides with the loss of arm strength which makes it impossible to move in the bed. Being unable to transfer myself I rely on my wife to put me in bed with the hoyer. Once in the bed I am just not comfortable, usually I feel like my upper or lower body is somewhat twisted and I am unable to get things straightened out. If I am able to sleep at all I always awake after an hour or 2 due to discomfort from lying in the same position. Trying to straighten myself out leads to anxiety and shortness of breath. I’ve started sleeping in the powerchair nightly and it has been an improvement in my quality of sleep. Now after being in the chair for 6 weeks straight I’m starting to feel uncomfortable and restless at times. Mentally I just want out of the chair. Anybody else sleeping in the chair due to being uncomfortable in bed?

I think that part of the problem may be mental. Once I’m in the bed I feel like a prisoner, trapped forever unless somebody gets me out of it. At least when I’m in the chair I can move slightly by leaning on my elbows and slightly reposition myself. I’m going to ask at my next clinic visit about some anxiety and sleep meds. Any other suggestions?
 
I think you need an OT to come to your home and evaluate your needs in bed.

Do you have an alternating air mattress?

An OT may be able to give some good pointers to your wife about correct positioning in the bed too. I used to spend a fair amount of time positioning Chris correctly and using pillows and wedges to have everything right. Our OT was incredibly helpful in working out many ways to make this all work.

You wife *may* have to reposition you during the night too.

I think meds to help sleep have a place, but if you were to simply sleep when not laying well (say with your body a bit twisted) you may only make things worse.

Hope that helps
 
Hi,
I'm sorry you haven't been sleeping well. I know it is so frustrating and makes coping with everything else that much more challenging.

My PALS sleeps in the power chair all the time because that is what is most comfortable. We have a very good bed for my PALS and we tried every possible trick but the chair is what works right now. We are of the mindset that whatever works is fine. We have learned that we have to be flexible and be willing to switch things up if find that something isn't working.
 
I can empathize with you, as I have similar sleep issues. While lying on my back is most comfortable, I am unable to move from that position and feel like I’m glued to the bed. I can handle it for a short nap, but then my leg started feeling jittery and mentally I feel like I’m trapped – and feel like I could have a panic attack if no one was around to move me or get me out of bed. I’ve been sleeping on my side at night, as this allows me a bit of movement. However, this causes me pains in my knees, hips, legs and shoulder. I wake up a number of times in the night and ask to be moved.

When you sleep in the PWC, are you fully/mostly reclined? I haven’t tried sleeping in the chair myself.

Anyways, I don’t really have any advice for you but I do commiserate as I have the same problem.
 
When you sleep in the PWC, are you fully/mostly reclined? I haven’t tried sleeping in the chair myself.

I put a pillow beneath my feet and raise my feet to a comfortable level. Then I recline the back a bit and tilt the chair back. I end up mostly reclined sort of like what a recliner looks like.

Hope that you can find a solution to your sleep troubles
 
My PALS (my wife, Darcey) moved to the hospital bed when she could no longer move her legs well and when turning became difficult. She would wake with cramps in her legs if she was in the same position for too long. After moving to the hospital bed, she found that she could raise the head somewhat and raise the foot section and was okay to sleep for about an hour to an hour and a half. She'd then wake with pain in her back, legs or feet... and quickly wake me to come and move her to her side. We'd adjust the bed flat, again... and then move her to her side. We'd make these adjustments about every hour or so... all night long. Neither of us was sleeping well. I mentioned this to our ALS coordinator and she immediately contacted the ALS Loaner Closet and ordered an 8" Low Pressure Alternating Air Mattress be delivered to us. She describes the night she first slept on the new mattress as the difference between hell and bliss. On that very first night, I put her in bed (with the Hoyer) in a position on her back. She winked at me and said, "See you soon!"... knowing full well that we'd up again in an hour or so. I woke 9 hours later. Darcey was still asleep. That night... and most every night since then... she sleeps through the entire night.

We, too, have her sleep in the wheelchair when we travel. The hotel beds just can't match what we've accomplished with the hospital bed and the 8" air mattress. But to sit in the wheelchair all day... and continue to sleep in it at night... would worry me. You need to move certain muscles and joints every day. Staying in the wheelchair 24/7 would not encourage that movement. I'd also be concerned about bedsores developing... as the same points of contact would rarely change. Let me tell you... as Darcey would tell you... SLEEP IS A WONDROUS THING! Get yourself a proper air mattress. The one we have, insurance would not have authorized unless you were seriously ill with extreme bedsores. But to have it before such injury occurs should be on anyone's list of necessary items.

Let's not kid ourselves. As PALS, CALS or supportive family/friends... making our day to day routine the best it can be to maintain a hoped for quality of life is difficult. Don't let lack of sleep make it even more so. And especially when something so seemingly inconsequential as the proper air mattress might very well remove the misery that some believe they have to endure in the deep, dark of the night...

Jim
 
It was late last night and I wasn't paying close attention. Please let me clarify that my PALS sleeps in a power recliner not a power wheelchair. The chair is very cushioned and she has a sheepskin pad on top of that.
 
Now that makes me wonder if hn7609 meant the pwc or a recliner?

Chris slept in the recliner for many months before he finally moved to the hospital bed, but it was taking Endep for depression that really started him sleeping well in the bed.

Same issue - in the chair he was more able to change position at least slightly. But then he reached a point where the bed was better again.

We did find that we would work out positioning solutions and then after some weeks they suddenly wouldn't work anymore and we would have to start trying something else.
 
Now that makes me wonder if hn7609 meant the pwc or a recliner?

I have been sleeping in the PWC. The power foot rests, tilting back and reclining feature on the seating system makes it possible to get fairly comfortable for a few hours at a time and sleep.


Thanks for the ideas. I contacted my local loaner closet about the alternating pressure air mattress. They are checking now to see if one is available. My back hurts and my neck is sore from the chair..........I've got to get back in a bed.
 
HN,
We used foam/sheepskin/poly travel pillow combinations for Larry's arms and hands every night, and often changed the mix based on his position when we did place him w/ the Hoyer. So his elbows were always floated, likewise his heels (were you wearing pressure boots in the bed?), and we had a foam belt wrapped around his legs above his knees to stabilize his hips. He often felt that he wasn't in exactly the right spot vertically or horizontally, even though we had marks we tried to hit, but adjusting these things enabled him to sleep.

I wonder if some of your discomfort might relate to pain from joint pressure referring into your soft tissue, so I would work on that along w/ the alternating pressure overlay or mattress if that helps. Larry would not have been able to tolerate that, so we used a good foam overlay on top of a medical grade foam mattress. I wouldn't advise any PALS, whether sleeping well or not, to use a hospital bed mattress alone. There's just too much torque on bony prominences and joints with that minimal level of cushioning.
 
hn watch out sleeping in your chair. i done fell out of mine. now i have the belt on. i do get some time out of it when i know my boys are coming over. they can help me get in and out of my bed. that helps to lay down one an awhile.
 
An update on my situation. My OT was able to get me a trial of an air mattress, the Roho SelectAir Max (I was sent a new one, but the OT said that if we get ALS Society funding they would likely replace it with a used one on rental).

On the plus side, the air mattress is comfortable when sleeping on your back. It’s like a Roho seat cushion, except your whole body sinks in. The downside is that I’m not able to move from that position and I don’t like that feeling. But, perhaps I should get used to it as my mobility is never going to get any better.
 
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