Positioning in Bed

• Mike's story
• My story

[from the ALS Digest]

I faced the problem of being comfortable for long times in a bed. I have developed a solution that has worked for many years and has been adopted by some who read this Digest. Basically I use six pillows to support and prevent pressure points. The first thing is you need to build a footboard. I used a piece of quarter inch plywood cut so when pushed into the foot of the bed it sticks above the mattress at least a foot. Then I put a large sheepskin on the bed. This permits adjustments once in bed! I place one pillow upright against the footboard. This gives a comfortable support for my feet so the foot drop wont hurt. A second pillow is placed under my legs being pulled down to just before my heels. This leaves my heels suspended in air and eliminates pressure on my heels. Two more pillows are placed one under each arm. This supports the arms at a good height and gives a soft place for them. Finally, I place two pillows under my head. The back one is pulled or pushed in to give my head the proper angle. I use an adjustable bed and find I like my head and feet up for sleeping or watching TV. This system has made me comfortable for days on my back. Depending on the bed, you may find you need to fold in double the foot pillow against the foot board to get enough support. The sheepskin is used to adjust me in bed. It can be pulled whichever way you need. I use a head towel under my head. It is rolled up to keep my head upright. I also use a Med Labs E Z Call (TEL 805 968-2486) call switch on one side to connect to my call system. By a combination of adjusting the back pillow and the head towel I am placed where I can easily turn my head and use the call switch. It takes some time and experimentation to find the correct pillow positions but the result is I can lay on my back comfortably all night!

Mike

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It's very important to deal with sleep problems quickly. The effects of interrupted sleep creep up on you and you may not realize it. You may have trouble mentally focusing, feel unmotivated, and be irritable. PALS and caregivers don't need these problems on top of everything else.

The first problem I had with positioning in bed was not being able to turn myself over. I needed to pull my knees up to turn myself but was too weak to do so with a blanket on. (This wasn't a problem during the summer when I could sleep without covers.) My dad made a rectangular frame from PVC pipe which my blanket could be put over to make a tent. He left some joints unglued so it could lean disassembled against the wall during the day without taking much room. At night my wife would put it together over me after I was in bed and then put my blanket over it. The blanket came down on my neck so my whole body was in the tent except my head. The tent was high enough that I could pull my legs up and turn myself. The tent trapped warm air and kept my body warm. I could breathe fresh air because my head was outside the tent. But this solution only lasted a few months, until I couldn't turn myself even with the tent.

When I couldn't turn myself at all I started waking my wife up two or three times each night. The sleep deprivation gradually wore us down. I emailed Mike and he told me basically the same information in the entry above. But I was afraid to sleep on my back because I thought I would aspirate my saliva while asleep. My foot drop made the tops of my feet hurt after a couple of hours when I did try sleeping on my back, so I tried a footboard. It didn't work because my feet turned in too much and that put pressure on the outside edges and made them hurt, even with a pillow.

My wife then checked me into a rehabilitation hospital for a week where we could brainstorm with specialists about my sleep positioning problems and other issues. The solution we came up with was a hospital bed, braces for my feet, an air mattress, and a modified version of Mike's pillow positioning. The braces, by Restorative Care of America, Inc. keep my feet straight and keep pressure off my heels. I have the 21MP model which was recommended by a physical therapist. Apparently this model is no longer made. Look at all their foot products with your PT. The air mattress, a Q2 Plus by KCI keeps my weight evenly distributed so I stay comfortable on my back all night and don't get pressure sores. (As of 12/99 I didn't see this model on their web site.) The hospital bed allows me to adjust the angle of my upper body for comfort. I have one pillow behind my head in a normal position. I have a second pillow turned sideways on the left side of my head, under the left edge of the first pillow but on top of my shoulder. With these pillows and the head of the bed at just the right angle (30 to 40 degrees) I can comfortably sleep with my chin tucked down and left, my head supported by the thick side pillow. This position lets me swallow and sleep without aspirating. I have a thin pillow under my knees to keep them slightly bent to keep them from getting sore. This has worked for me for several years. I also use a Med Labs E Z Call call switch clipped to the right side of my head pillow. I just turn my head to the right where I can hit the large touch plate. Fortunately my insurance, Aetna, paid for the hospital stay and equipment. They realize that prevention is cheaper.

The mattress turned out to have more features than I can use, but I had to try it for a while to find that out. It has a microprocessor controlled air pump which runs continually, but the noise isn't too bad. Buttons on the microprocessor box control the features. The Q2 Plus model mattress has three large tubes which run the length of the mattress and have independent pressure controls. It can be set to pressurize first one side and then the other which rolls the patient slowly from side to side. The motion is so gentle that you can sleep through it. The frequency of turning and final angle are controllable. This feature is great for preventing and treating pneumonia, but I didn't have the neck strength to move my head when the bed had me turned, even at the smallest angle. (When I tried this I had a pillow on the right side to support my head and no call switch.) So I keep this feature turned off. I could have used another model without turning.

I do not sell or profit from any of the products I mention.

God bless you on your journey, Wayne S. Phillips

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