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JimInVA

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Joined
May 29, 2014
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1,013
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Lost a loved one
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04/2014
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VA
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Poquoson
My dear Darcey, my PALS, is unable to move much in bed. She cannot pull her legs up to bend them, but can stretch them out. When on her side, she hugs a pillow... but anything heavier than a pillow, traps her arms. She cannot turn, on her own, in bed. We have three sleeping positions, back, left side and right side. And we only use the bed at night (approx 9PM to 6AM).

We will typically start the night on her back (a position made possible by her BiPAP). Her legs are straight out in front of her. For the first 30-60 minutes, her legs are flat on the bed. When I'm done reading, doing something internet or watching Netflix... I'll get up and place a single pillow under both knees and extending down towards her feet. If I don't get some kind of rise, particularly for her heels, she'll wake up in extreme pain... this being prolonged if raised by the pillow.

After something between 1 hour and 3 hours, she'll awake in agony... begging me to move her to her side. I get up, come around the bed, remove the pillow under her knees and begin to move her leg so that the her joints (hip, knee, ankle) don't hurt as much... and so her heel is not touching anything as it again comes alive. I then move her to her side, help her curl her legs up and again place a pillow under the top knee... which is slightly back from the lower knee/leg. An adjustment of her head pillow and recovering with sheet/blanket... and we're good for another round of 1 to 3 hours. And sometimes, between turnings, she'll have awakened and stretched out a leg... then wake me to pull it back up for her (when on one side or the other).

I'm a bit at a loss as to what to do. When she sleeps, she seems to sleep comfortably and soundly enough. But at some point, she'll be awakened by the pain in her heel or the joints in her knee(s) and/or hip(s). Sometimes it can be frightening... when I awake because she's tapped me or whispered to me and I sit up to get my bearings and wait to wake up enough to actually rise and walk... as she finds herself in so much discomfort that she pleads for me to hurry to move her legs. Obviously, it is difficult to see her hurt. And I'm disappointed that I've not yet been able to find a way to minimize or alleviate the pain that she repeatedly wakes to.

Months ago, we got a hospital bed (very, very basic and provided by insurance) that we used once or twice before abandoning it. I think, at the time, it was pre-BiPAP and breathing was difficult when on her back. Tonight we're going to try the hospital bed again... to see if the ability for her to change positioning of the bed, periodically through the night, might lessen or remove the agony she experiences. Fortunately, she'll still be in the same room, so I'll continue to be close at hand.

I wondered if anyone else has experienced this kind of difficulty sleeping/awakening and what you may have found to work well for you/yours. Your insight, comment and suggestions would be very appreciated.

Jim
 
Jim, I've seen several posts here about a turning mattress that is supposed to automatically turn your pals every so often. Think your supposed to be able to set the timing on it. The sleep problem seems to be pretty common for pals, I know I experience it but am fortunate that I can change my position although it takes a lot of work and am wide awake afterwards. Hopefully some of the CALS that have experience with the turning mattress will chime in and give you better info
 
This sounds very much like our nocturnal adventures. I wake up several times a night with an aching hip or shoulder if I am on one side. I don't like sleeping on my back but generally start the night there. The heel pain you mention is amazingly excruciating but is preventable. The key is NOT to put pillows or other padding under the heel. Instead the padding goes around the heel to lift the foot without anything under the heel. There are "boots" made for this but aside from the usual over pricing of medical products, they feel so restrictive and bulky because they combine pressure relief with angling the foot to prevent foot drop. A thick foam pad with cut outs under the heels works well. A board at the foot of the bed with a pillow or pillows in front of it prevents foot drop. I have tried sleeping pills but they don't prevent awakening when something hurts, they just put you back to sleep quickly after repositioning!
 
Jim....I am feeling your pain reading this. Hopefully the CALS will give you enough new ideas to help you and Darcey figure this out.
I just realized how easy my burden is........
 
Yes this is an extremely common story for PALS that have lost the ability to move their legs. We did use the AFOs that Daine mentioned which protect the heels, and I had his legs up on one of the chair back pillows with arms that people use to read in bed, except I laid it on its back with the arms pointing up. This did 2 things, flexed the knees. and the arms prevented his legs from spreading apart and falling off. He also had an alternating mattress overlay that protected him from bed sores. A person can develop a bed sore if left for longer than 2 hours in boney prominences. After a lot of research I found the probed bed and the VA covered it. I wonder if your insurance would cover it. It is amazing, as there is a bolster that Tim's legs go into with a well for each heel, and it holds his legs so that they don't flop when the bed turns. It can be programmed to how many degrees he is to be turned and how long he stays in that position. He does 20min. on right side at 20 degrees, then the same on left side. He chooses not to lay on his back, because he is on it all day in his pwc. If he does not have to urinate he sleeps all night long, and if I can actually sleep, I could too. The other thing that we have found that makes a huge difference for his hips and lower back is that I take one leg at a time, bend his knee up push it up as close to his chest as is comfortable and hold it there for 30 secs, and repeat with other leg. He says that is seems to set his hips out of a hyper flex. He has not had pain in his hips since we started to do that except one time when I forgot, and he woke up in agony. I hope you can solve this problem for both your sakes, sleep is so important.

Paulette
 
Thanks for the comments. I'm using a pillow to raise the knee and heel of the upper leg when she's on one side or the other... and both legs/heels when on her back. Tonight we're going to return to the hospital bed and see what we can accomplish there. The Pro-bed sure looks interesting, too. I'm a service veteran but not Darcey. Don't know if our insurance would support such a device.

Again, thank you all!

Jim
 
It was a night of mixed results... but even that provides new information upon which we can adjust our process. Darcey was able to utilize the bed's positioning, at will, throughout the night. As such, the pain in her knees was greatly reduced... though her heels seemed more on fire. For the last sleep stretch of the night, I put a very soft, rolled up towel under her ankles as she laid on her back. That seemed to produce a better result, too. The mattress, however, is not equal to our bed... and she found more discomfort in her midsection (tail bone and hips). So we'll take what we learned, make some adjustments and do it again... and again... until we get it right or are moved to the next challenge. But what a sense of accomplishment when we finally get it right...

Jim
 
Standard hospital beds don't come with good pressure relief mattresses. They need added memory foam mattress toppers to work at all and even then are seldom comfortable enough for PALS. The rotating mattress would probably be the best but may not be covered by insurance until a pressure sore has already developed. Pure stupidity but... You can buy good memory foam mattresses for far less. The best ones have built in zones for pressure relief in the areas where pressure is highest.

These memory foam mattresses are constructed in 3 layers with the bottom layer being high density (5 lb. density or higher rated) foam. The 2nd layer is also high density but is cut out in the center leaving a frame about 6 inches wide at the sides. The frame provides firm support when you sit on the side of the bed to get up. Inside this frame is medium density foam (4 rated). This layer has sections cut out under the foot and pelvic area. These cut outs are then filled with a layer of low density foam (2 or 3 rated). This gives the greatest pressure relief in the areas where pressure points are most likely to cause pain or pressure sores.

You can make a less expensive memory foam mattress by buying different densities of memory from suppliers found on eBay. This is new factory direct memory foam. Prices vary but you should be able to find the memory foam you need in the densities you need for $70 to $100 per layer. You will need two or three layers. It may be cheaper to buy a queen or king size piece of 2" foam, cut it in half and use both layers instead of buying a 4" piece. You will also find offers for any size foam for the same price so you may as well buy king or queen rather than twin.

If you want to assemble your own mattress you can probably skip the second layer of high density foam. If you are no longer able to sit on the side of the bed and get up by yourself you don't need the frame part anyway In that case the only function it serves is to make the mattress thick enough for fitted sheets to fit. You can just use your regular mattress and build up on that.

Note: If you have a hospital bed with an old "butt sprung" mattress you can replace it with an inexpensive twin mattress. Hospital beds are extra long simply to fit all people. Unless you actually are tall, you don't need to replace the mattress with a hospital bed mattress or an extra long mattress. A standard twin mattress will work fine and will bend correctly when the head or foot of the bed is raised.

Put 1 or 2 (layers to make the foam about 4 inches thick) of medium density foam on the mattress. Memory foam clings to itself so the layers won't slide apart. You can cut it with scissors or a knife and I have heard that an electric knife as used for carving the Thanksgiving turkey works well.

Next, cut the top medium density layer out to insert a layer of low density foam under the foot and pelvic area. Now you are ready to play Goldilocks and experiment to see what is too hard, too soft, and just right! You will probably end up with cut outs that go through both layers of medium density and are filled with 2 layers of low density but it is worth a little experimentation before you cut more.

You can take a big short cut an simply put a layer of low density over a layer of medium density, but the lower the density the more you sink in. The deeper you sink the hotter you will get since the foam holds in your body heat. Only putting the low density foam where the most pressure relief is needed will reduce the heat build up somewhat. If you are generally a real hottie, you might want to use high density foam instead of any medium density and put the low density into the cut outs. That will reduce how deeply you sink in and how hot the mattress is.

Being able to adjust the low pressure areas for the height of the patient is an advantage over a ready made memory foam mattress. Just don't make the extra soft areas so short that a pinpoint landing will be required to get them under the bony parts. I find that I end up scooted down a bit each time I am turned. On restless night I can migrate south like a hummingbird in the fall!

Another huge advantage of this do it yourself choice is that you can add low pressure areas wherever they are needed. Thin people may benefit from having a low pressure strip inserted under the length of their spine. Those spinal knobs can create pressure sores too. The tips of the shoulder blades are another pressure area so a layer of low density foam across the mattress at that level can add extra comfort. This type of customization isn't available in ready made mattresses!

Diane Huberty
ALS: From Both Sides
 
Thank you, Diane! I think I'll experiment with this to see what I can do. Very well thought out and described. Again, thank you!

Jim
 
a pillow between the knees when she is on her side will relieve some pressure on her hips and knees. helps my husband, and me too when I was preggers.

Jim I am always doing the pillow dance too--everynight! nothing seems to really help!
 
I sleep with two king sized pillows under my knees -- standing on their long side, they are just the right height for my feet to be flat on the bed.i Have the head of the bed up slightly with a u-shaped pillow under my neck. I cannot move myself either. I have my hands in my lap. I'm usually good for the whole night like that, but i sometimes have to wake my husband up if I'm uncomfortable temperature wise. Your struggle is familiar. My husband and I tried AFOs to prop my feet up, and plantar fascitis braces, but they hurt my heels.
 
My husband was having a lot of soreness and achiness. A mattress topper has really helped him. We got the beautyrest 2" topper at walmart. They run about $59 and can be shipped for free to your home.
 
We had the same but opposite as for my husband it started in his shoulders hurting at night.

The hospital bed was wonderful for him even when he could no longer use the remote (the last couple of months only thankfully).

We had an alternating air mattress on the bed, not a topper, it was the entire mattress. The motor was quite, and I used a blanket to reduce the vibration of it on the bed as it hung from the end of the bed.

No solution works perfectly, and I hated how I could get something working and then progression would change the game plan again.

But the range of strategies here gives lots of things to keep trying.

So glad last night was a good night and you have something to build on!
 
I sleep with two king sized pillows under my knees -- standing on their long side, they are just the right height for my feet to be flat on the bed.

Eek! Big pillows behind your knees will reduce blood return from your feet and lower legs. That will make any swelling worse and increase the risk of dangerous blood clots in your calves. Try a thick foam pad with a deep cutout under your heels and use those pillows to keep your ankles flexed to reduce foot drop. Be safe!
 
we have the sleep # bed which allows for a change in back support, and now I see they have come out with an adjustable bed, each side is individualized.
Steve sleeps on his back, memory foam head pillow. 2 standard pillows under his knees, one standard pillow under his lower legs and feet. a long soft lumbar support pillow(like for a chair or sofa)under his calves to keep pressure off his heels. neck support pillows, like for flying, can be used to keep feet from flopping outward if needed.
oxicotine at bed time keeps pain at bay and helps get a good nights rest. he wakes me only to pee.

welcome to the pillow game! TJ Maxx has a wide variety of pillows FYI, and I found some nifty swishy bean bag pillows for 5 buck each at AC Moore craft store...great for under the arms so they have support and don't roll off armrest ect...
 
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