Shifting position in Bed

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em9988

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My moms arms still work but her legs are completely gone and she has trouble turning herself and if she lies there for a while, she says her legs become very uncomfortable and needs to adjust from flipping on the opposite side. I've gotten her like a side of bed handlebar so she can grab it and do minor adjustments.

Her and my dad still sleep in the same bed and he currently helps her turn in the middle of the night but my dad also has limited mobility due to him having a stroke a few years back, he can kind of do it but I can tell that his quality of sleep has really taken a toll on him.

we live in a small living space and can't really get a hospital bed yet, is there any equipment that can assist my mom in adjusting her legs or flipping to the other side in the middle of the night?
 

lgelb

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Hi, Em, as I recall, you are there, too -- could you trade off hours with your dad? A bed trapeze setup might also help since she has some arm strength. And a wedge for her legs, pressure boots, and/or foam under her knees may reduce her need to move.

Is there a plan for the hospital bed? When her body/legs are supported at an angle, she will be more comfortable without having to turn as much.
 

Nikki J

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I know someone here had some success using a soft strap around their legs but as Laurie said planning ahead is very important
 

Firefighter58

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I had the same problem, and a hospital bed was the answer. With the bars on each side it allows me to move around in the night
Al
 

em9988

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Hi, Em, as I recall, you are there, too -- could you trade off hours with your dad? A bed trapeze setup might also help since she has some arm strength. And a wedge for her legs, pressure boots, and/or foam under her knees may reduce her need to move.

Is there a plan for the hospital bed? When her body/legs are supported at an angle, she will be more comfortable without having to turn as much.
I work on weekdays so I help during weekends but I can see that my dad is still physically and mentally drained.

We do have something for her to grab onto and turn but she can no longer do it, and we've tried wedges foams, and pressure boots and used various pillows to readjust her leg position including being supported at an angle almost every 30 mins to an hour because she sleeps in short spurts and wakes up and complains of leg pain and uncomfortableness if her legs don't move for a period of time.
I know someone here had some success using a soft strap around their legs but as Laurie said planning ahead is very important

that's probably my next move

I had the same problem, and a hospital bed was the answer. With the bars on each side it allows me to move around in the night
Al

a hospital bed would be very hard to include in our living space, and my mom is very against it for it
 

affected

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Hi Em
I'm afraid that a hospital bed is going to be a necessity, if not now, very soon.
A hoist to get mum in and out of bed as well.
If space is limited, dad may need to get a smaller bed for him so the hospital bed can be in the room beside his smaller one.
Or can you set mum up in the living room maybe? I ended up converting my living room (we call it a lounge room here) into my husbands room with recliner chair, hospital bed, and all his equipment. It was really hard at first not to have him in our own bedroom, but it was vital to be able to care for him and he finally started sleeping without needing to be helped all through the night.

It will be awful if your dad ends up injured or too exhausted. I wish there were easier answers.
 

Firefighter58

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My hospital bed is set up in the dining room with a commode. It really works well. I need help to get up and sit or lay down, but once I am down I'm good till morning.
Al
 

em9988

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Hi Em
I'm afraid that a hospital bed is going to be a necessity, if not now, very soon.
A hoist to get mum in and out of bed as well.
If space is limited, dad may need to get a smaller bed for him so the hospital bed can be in the room beside his smaller one.
Or can you set mum up in the living room maybe? I ended up converting my living room (we call it a lounge room here) into my husbands room with recliner chair, hospital bed, and all his equipment. It was really hard at first not to have him in our own bedroom, but it was vital to be able to care for him and he finally started sleeping without needing to be helped all through the night.

It will be awful if your dad ends up injured or too exhausted. I wish there were easier answers.
yeah perhaps very soon, is there terms for this type of discomfort, so I can look into how I can try to ease them with different methods? I asked her if its muscle pain and she cant really describe it.
My hospital bed is set up in the dining room with a commode. It really works well. I need help to get up and sit or lay down, but once I am down I'm good till morning.
Al
Can these hospital beds turn them side to side? her arms are also going and she's is barely able to turn anymore by grabbing onto something
 

Firefighter58

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No the hospital bed can not turn side to side ,I also have limited arm strength but can manage with the aid of the rails. possibly you could rent one and try it .
Al
 

wishmobbing

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The rails of the hospital bed are maybe helpful when trying to self-reposition. But the main benefits of the bed are the adjustable features. Tilting up the top or knee part can help her with breathing and comfort. Adjusting the height can make transfers easier and is a feature that saved the backs of many caregivers. It's also quite helpful to be able to access the bed from both sides to care for someone who is washed in bed or needs to be repositioned.
The clear downside is not being able to share the bed easily. But I've seen a queensize hospital bed in the room of an MS patient, so maybe that's an option if your dad wants to stay closer.
But his quality of sleep might improve in a separate bed or even room, if he were to get overnight help for your mom, so he's rested for the "day shift".
 

Firefighter58

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What wishmobbing said is very true, I can also pull myself up towards the headboard with my knees raised by the bed, and the use of the rails ,like wishmobbing said, my wife has no problem getting me up in the morning with the aid of the bed.
Al
 
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my Chris could not turn himself at all, but with a hospital bed, alternating air mattress, hoist to position him in there well and many pillows to support joints, some mild meds, he was able to sleep all night. Before that he would be up and down all night wanting to move from bed, to recliner, to lounge, to recliner ....

When he first started in the hospital bed he could get in himself.
 

Jimi

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I sleep, well more like live, in a power recliner/lift chair. It has brisa fabric (easy to clean and breathable) and a power headrest. Golden technologies makes it. Haven't slept in a bed for about 5 years. I'm paralyzed from the shoulders down. I modified the wired remote so I can control the chair myself from my computer or phone with head tracking or with voice commands through Google assistant. No medications. Don't bother anyone for help during the night (8 hours). Never any sores. I recently added a thin seat cushion to relieve tailbone pressure. Still comfortable after all this time and I don't have much muscle anywhere. It's very easy to get a sling on for transfers with the hoist. Peeing into a urinal in the lift position is very easy and convenient also.
 

KevinM

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Jimi, I have said this several times before but you are a true inspiration. I’m sure many others here feel that way as well.

Many here are amazing and inspirational, but the fact that even with the trach you don‘t need to bother your family throughout the night is incredible. No issues with bed sores, no meds at all, the way you have so brilliantly customized all your controls, and on and on. You‘ve probably mentioned this before, but do you have a feeding tube, or are you still able to swallow and eat?

The bottom line for me is that you still have what sounds like a good quality of life and don’t require round the clock assistance is beautiful and really quite rare. When I am having a really crappy day thinking about the future, your story always picks me up. Thank you.
 

Jimi

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Thanks for the kind words Kevin. I've had the trach and feeding tube since mid September '21. I waited until I had a very hard time eating and protecting my airway plus I couldn't really speak. Once the trach was placed I have not eaten or drank by mouth.
Everything I do is geared towards minimizing my impact on everyone while still remaining relatively comfortable and safe. I don't have the resources to pay for a lot of extra care or to have someone figure out and set up all my technology needs. Fortunately I was pretty handy in my former life. What I don't know I will educate myself. The information is available. Since I can't work, there's no excuse not to spend lots of time reading up on what is needed.
Most of this is a mental challenge. Especially when it comes to the anxiety meds. They are great when absolutely needed, but terribly addictive. I had to take a lot of Ativan while I adjusted to the trach. But I tapered off to zero within a couple months. ALS is difficult enough without a drug habit. Fortunately my wife and I have never had a need for antidepressants. We just aren't wired that way.
Of course I wish I could get out of my room more. That takes resources I just don't have . But I am comfortable and my brain is all here. It's not that bad.
 
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