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JimmyD

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PALS
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California
Hello all, I am again asking for your help with some new problems my aunt has been having. She is unable to move any part of her body other than very slight movement of her head from side to side. She is also using a feeding tube which is working out very well.

My question is that she is unable to sleep for more than 15 – 20 minutes at a time at night. She needs to have her caregiver reposition her each time she wakes up. Since she is unable to speak at all, it often very difficult for us to figure out what needs moved... hands, arms, legs etc. She is using a communication device and that helps some of the time, but it seems to be getting harder for her to use it as well. I am just wondering if anyone has any suggestions on helping her to sleep more comfortably through the nights. Her husband gets no sleep and then goes to work all day, he is simply exhausted. The family often tries to be there when we can, but do to our own work schedules we are usually only available on weekends. She is often very irritable and gets frustrated very easily. I am not sure if that is due to the disease or lack of sleep... or both. Any help would be greatly appreciated.
 
Hi Jimmy. Sorry your aunt is having such a hard time. Has she had a sleep study or any kind of breathing tests done? Sleep apnea can cause someone to wake constantly all night. The feeling of smothering or not getting enough air could be bothering her too. A Bipap would help that as well. If she is just uncomfortable maybe an egg crate type foam mattress cover or the new memory foam ones would help. Hope some of this helps.
AL.
 
restless nights

Hello Jimmy I'm sorry your Aunt is having such a difficult time at night.
If her problem is one of position, it may help to use different sized pillows, even rolled towels to support her back, hips and between her knees and feet/ankles. These all helped to keep Sis more comfortable, hope they help your family too.

If breathing is a problem, perhaps she can be evaluated for a Bi Pap to help her. Respirologist would be able to help with this.

An alternating pressure air mattress made a lot of difference to Sis, we were able to leave her undisturbed from about eleven at night until four in the morning (once we got her comfortable). We had no problems with skin break down even when letting her stay in the same position all night.
Hope these little things may be of help to all of you.

Jane
 
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