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SRS0273

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Hello,
I was hoping someone may have some suggestions about how to keep my mother on her side and not rolling to her back in the middle of the night. My mother was diagnosed with ALS in June of 2020. At this point she is dependent on 24/7 care from myself or sister. Her speech is completely gone and she cannot move most of her limbs, she can barely move her arms. First issue is when we put her in her regular bed she likes to be in the middle and on her side. Unfortunately, we are constantly getting up at night because she has rolled to her back and most of the time she does not sleeping like that. Does anyone have any ideas how we can prevent this? Another issue is communication after she has taken her bedtime medication communication between us and mum is really difficult, we are spending more time trying to figure out what my mother wants, than actually doing it. Does anyone have any tips or tricks on this matter? I'm looking for any help that may make things easier for her and us. Thank you in advance.
 

lisa g

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Have you tried putting a pillow wedge in back of her to help keep her on her side?
 

Nikki J

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+1 for support. If you already tried experiment with firmer supports

for communication I suspect there are a number of recurring issues so it might help to list them have a way she can indicate which- by pointing or saying number 5. The other thing I found helpful for my sister when she couldn’t use eyegaze for some reason was drill down questions that are yes/no starting generally and moving to more specific issues as you narrow it down. An example would be if she wanted the light on If you start with a question like is it something with your body? And she says no that eliminates the 8 million position, wet, needs toileting, a drink etc. if she says yes then a second question might be does she want a position change? You get the idea. I found this reduced frustration for both sides
 

affected

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Welcome and I'm so sorry for your mum's diagnosis.
Wedges may really help, you may also need to look at a hospital bed.
Is the communication issues because her speech is declining?
We used alphabet and word charts that I would make.
I made charts for different things too - eg an evening chart with a list of the things typical to evening activities.
If you can learn to ask simple closed questions, mum can answer yes or no, then you can drill from there to the next.
eg Are you cold? yes. Do you want socks? no Do you want a blanket? yes
If you ask her - what do you want? You have asked an open question and it can take longer to get to what she really needs.

I hope that helps as a start.

Let us know if the problem communicating is something else entirely.
 

SRS0273

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Hello and thank you for your reply. Yes we have tried the wedge and she doesn't particularly care for it. We actually just recently got a hospital bed and she doesn't like it. She says it makes her feel confined. I see her point, going from a king bed to a hospital bed, is a bit of a change.
 

SRS0273

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The communication issue is mostly at night after giving her bedtime meds. She has lost all speech so the only way to communicate is through limited hand movements and eye blinking. The communication is not really a issue during the day but once she gets her bedtime meds, she just becomes very groggy because of the Ambien and morphine.
 

lgelb

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Ambien and morphine at night could depress breathing -- part of the grogginess you note. Does she really need both to sleep? You might consider tapering down.
 

affected

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May I ask is mum using bipap? I'm wondering if breathing is disturbing her sleep, and if she then rolls towards her back she would wake up?
 

Texas Quilter

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I have seen very long bed pillows. The kind you snuggle up to. I wonder if that would work & be more comfortable. Perhaps use that & the wedge behind it
 
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