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Sep 19, 2006
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Loved one DX
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Michigan
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Grand Ledge
Hello gang,
I just have a question to pose to try and help my Mom(73yrs). She is having trouble sleeping mainly because she can't move/roll in the bed. She is very unconmfortable, sore etc and by morning, totally exhausted. This is becoming so frustrating to her and her spirits are really falling. She seems to be fading fast as far as her mobility goes. Left arm and hand gone, right arm/hand only at about 20% and now it's moving to her legs and feet. So far breathing ok and speech just a little slurred. Dad is main caregiver and he's exhausted as well...his health not so great either. We are currently making arrangements through hospice to get help in the home or possibly place Mom in a group home but I was hoping to get some tips on getting her more rest and making her more comfortable. Hang in there everyone and thank you so much for all the wonderful information and support I've received from ya'll and this forum. God Bless and take care.
Laura
 
Hi Laura. If you look under the Heading People with ALS-Pals and then look at the sticky; :Activities of daily living Manual there are some tips such as leg lifters ,wedges etc that may help your dad move your mom in bed. The wedges can be cut from a large piece of foam and propped or wedged under your mom to hold her in position for a few hours and then change her around using the devices mentioned. They also mention egg crate mattress covers. I have one 2 1/2 inches thick and it works great. If you need links to places selling this stuff they are in the manual as well if I remember correctly. If not let me know what you need and I'll try to dig it up for you. AL.
 
making Mom comfortable

Hi Laura: We found that "satin" sheets made moving and also turning a person easier. We got them at Sears, I think they were really called polyester. They wash like a dream and made things much easier for Sis.
When it becomes necessary to do manual repositioning we had a pair of very slippery sheets ( we got them through a friend who worked in a group home) I don't know what they were called, but they made moving and turning a breeze. In fact I was always a little worried about scooting Sis right out of the bed!
Hope this is of some help to you.
Jane
 
hi laura, i too can't turn and change positions. my legs' pains kept me up the whole night and then i was crumpy the next morning. my ot recommened putting my leggs on top of pillows which is helping alot. the doctor prescribed morphine for my pains because all the other drugs did't help. now i sleep 10 hrs. i ocassionally wake up at night;take a drink of my milk and fall right back to sleep. i must say that i elevate to a sitting position when i sleep. this helps too. god bless felicia
 
Hi Laura,
We don't live too far from each other, I live in Grand Rapids.

My mother seemed like she was never comfortable. Even in her passing she seemed to be restless. She was about 140 lbs. when she was healthy, and she withered to about 75 lbs. by time she passed. Her biggest complaint was her tailbone. Because she was so tiny, that's all she was sitting on. We doubled up some of the egg carton foam. For a while before she got her hospital bed, I had to sleep in her bed with her and roll her through out the night. I feel for your father, it can be very exhausting.

My mom went so fast... we didn't really get a chance to utilize all of the technology and commodities there are out there. We did try just about everything else, donuts for her bottom as well as those bean filled neck huggers, we'd tuck those under her bottom to get her off her tailbone. But the only thing that really helped was to keep changing her position. When it got to the point where she couldn't help me move her anymore, we had one of those thick covers they put under people in the hospital. It helped alot to roll her over or skooch her up in bed when she slid down.

God Bless,
Sara
 
I wonder if Bipap could assist her with sleeping at night. Maybe she isn't aware of nighttime breathing difficulty and this is waking her more often? Just a thought.
 
Dear Anglebaby's mom

My husband who is 35 is having the same difficulties sleeping and was given a muscle relaxant (flexeral) to get him to sleep. he is still having alot of difficulties, but seems to have taken the edge off.
 
Hi husbandwithals.Welcome to the site. Do you mind if I ask whether it was a Neurologist, GP or a Pulmonologist that gave your husband a muscle relaxant? With ALS the muscles are already starting to weaken and if he is having breathing issues that could cause problems. At what stage is your husband at? Has he been to an ALS Clinic?
 
Hi Laura:
My sister had difficulty sleeping and turning. I asked the PT when she came in and she spent almost an hour in her room, I asked her to help me work this out and she did. We also ordered a jell mattress but that only seemed to put my sister in a deep hole that she couldn't get out off or a hole I couldn't get her out of. I ordered a memory foam mattress from overstock.com at a third of the price of the store and it worked pretty good I ordered the 2.5 inch. she slept better for a couple of weeks but then she was having diffulty again and the doctor gave her different meds to help her sleep and now we have adjusted those, it seems she gets several hours in a row. Good luck and God Bless
Pam
 
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