Need bed advice, please

[MJT]

My PALS is fast-progressing, with limb onset, and is in a tilt power wheelchair. He does not have a Hoyer, but I assume they will order it at our 12/20 clinic appointment. I can't seem to get him comfortable to sleep. We have tried the following:
bed on bed rails
bed off bed rails
bedrail to help him pull himself up
bed with a 3" gel topper
bed with a gel topper and extra pillows under the knees
bed with gel topper and wedge configurations
bed without gel topper and with wedge configurations
all of the above using rolled towels and small pillows
sleeping in recliner
sigh

We have a power recliner in the living room (without a lift.) He sleeps well in it, and we had just decided to get another recliner with a lift function to use in the bedroom when we started second-guessing our decision. Do we make do until a hospital bed is ordered? (Tom'swife, I know you said your husband couldn't use his.) We are trying to stay ahead yet not throw money at issues unnecessarily.

In addition, PALS sometimes needs to nap on his side due to tailbone pain but needs to sleep on his back at night due to using a Trilogy. So we thought he could sleep on the bed when napping on his side if we got the power lift recliner.

Thanks for your advice.

 

[affected]

I would say hospital bed is a must.
Tomswife said her husband won't use his because he can't get in and out with out help. So he is resisting using it.

A hospital bed and hoyer will make all the difference. I'm not sure why he needs to sleep on his back because of the trilogy?

 

[MJT]

Thank you, Tillie.
Correction, PALS just told me he doesn't need to sleep on his back bc of the Trilogy, but prefers to.

 

[Tomswife]

Mjt. I dont know if this summary is helpful. We do have a hospital bed with gel topper. The main reasons it is not used at night is Tom can't get on or off alone. His arms are weak. Hands not fully functioning. Legs cant lift very far.
I can assist him during the day but we have not done that yet. We pay extra for the power function of the bed (55 month) rest is covered by aetna medicare.
The power lift recliner gives him independence. But the OT and PT people do not think it is good for him to be in the sitting position all day. So it is a goal to al least use the hospital bed during the day.

The lift recliner does go almost flat. We dont use that ultimate recline because Tom cant go lower than 60 degrees. He uses the lift always to stand.

This is what we purchased on Amazon.

Irene House 9188 Lay Flat Sleeping Dual OKIN Motor Lift Chair Recliners for Elderly Infinite Position Recliner​

 

[Tomswife]

We talked to the respiratory therapist on nov 17. He tested Tom. Almost Normal respiratory function. He said tom "does not have respiratory weakness. He has bulbar weakness". And that is why he cannot recline laying on his back. I don't understand what is going on with this internally, but I will reach out to the therapist to see if i can get further explanation.

 

[Mary2]

Hi MJT: If you search the Forum, which I am sure you have, you can see people use a variety of different mattresses and toppers. One idea might be to see what ALSA has in their closet that you can try for free.

Jim use to post regularly on the website and his wife used an alternating pressure mattress. He did research and recommended the Drive Medical 14029 Med-Aire Low air Loss mattress replacement system with alternating pressure...Blue through Amazon.

We obtained this mattress and my husband has loved it. But some people according to the Forum don't like the alternating pressure.

For us it has meant less getting up to turn my husband at night. I don't have night help and this mattress is one of the main reasons why.

 

[Mary2]

Also, if you can communicate through a patient portal, what is the harm in asking for the prescription for the hospital bed today. It will take 30 seconds for a doctor to write the prescription and it will be sent to you or a DME provider by a nurse or administrative assistant.

 

[MJT]

Thank you for the summary Tomswife. Very helpful.

We were confused because we asked about the hospital bed at our last clinic visit and were told it had to be a medical necessity, so we assumed PALS didn't qualify. Then someone (neither of us can remember who, but it wasn't the doctor) said over her shoulder, "Oh, people hate them anyway. They complain of falling into the crevice in the middle," leading us to think there were better options.

PALS is still on short-term disability, and we are learning about Medicare.

I haven't used the patient portal well, but I will do so. They are quick to respond, so I'm unsure about my hesitation. As always, I'm grateful to everyone here.

 

[affected]

MJT and Tomswife have you checked the Anticipatory Planning sticky? It can help you think about being a few steps ahead.
I had a whole room that held furniture that had to be removed to allow equipment in and equipment Chris would not even consider using yet. But it was there, and I felt like a fairy godmother when he would finally agree he needed X or Y, and tada I happen to have that right here ... 😇
Seriously though, as I was also dealing with FTD, my Chris was hugely averse to equipment. Sometimes he would agree to a health professional that he would use something and it would arrive and he would look at me like I was stark raving mad and say - I'm certainly not using that! So I'd pop it in the room as he would reach a point where there was no choice and we saved crises of needing but not having.

 

[MJT]

I will look for it, Tillie. Also, I read Tomswife's post, which was similar to mine. I apologize for posting questions that have been answered! I'm a bit scattered, trying to stay in front of everything.

Your sweet Chris was lucky to have you.

 

[lgelb]

No worries ever about asking too much or the same thing. We have new people joining all the time, so they will be jumping in on the day, though the search button is always helpful.

That bit about the crevice in the middle relates only to the minimalist hospital bed with only the ability to raise the head and feet. It is like being on a teeter-totter.

Of course, PALS qualify for a hospital bed. It is a simple rx. However, Medicare as usual only pays for a minimum model and you pay for the rest. If he still has something that's not Medicare, you may do slightly better.

That said, this is where he'll spend a third of his day, as the saying goes, so it should be the right bed. That means it should have both "full and reverse Trendelenburg" so for example you can tilt his whole body to wash his hair, use a urinal or to relieve back pressure. A "full electric" hospital bed is not the same thing, though you do want power everything. No one should be cranking up a hospital bed, or a patient lift.

And of course it must be height adjustable to fit the Hoyer lift legs underneath and other care.

Some BiPAP masks work better than others for side sleeping, ditto pillows. I wouldn't buy a second recliner unless he is progressing pretty slowly (and as you say, he is not). I would use that money on the right hospital bed, mattress, pillow and overlay.

An alternating pressure overlay is not the only way to sleep through the night. We had a simple foam overlay. I sleep on a latex overlay even now, on a $100 mattress. I would get the bed right before worrying about mattresses -- order what looks good, but don't stress if it's not what you end up with. You definitely want at least "medical grade foam." All the bells and whistles like "sloped heel" are not generally worth it for the mattress because a PALS needs stability so often you will end up with pressure boots anyway. And you don't need a super thick mattress when you can customize the overlay on top that he will actually sleep on.

You might want to have a look at the equipment sticky.

As with many $1-2k items, it may be cheaper and less hassle to pay cash for the whole bed and buy on line. You can still hire someone to assemble it.

 

[KimT]

I've slept during the day in my Golden Cloud lift chair. Prior to diagnosis I had an adjustable bed and it still works for me but read what Laurie says about the hospital bed. That is so important. I recently changed toppers on my adjustable bed and it helped a lot with back pain. By all means get fully electric with both Hoyer lift and hospital bed and make sure they are compatible.

 

[affected]

Oh don't ever apologise for asking - it is kind of great that you are both at a similar place as you will be learning so much together.
The anticipatory planning document and other resources are here:

Resources

www.alsforums.com

 

[affected]

Many of us here have had wonderful experiences and success with the alternating air mattresses.
Not every PALS finds every combination of bed and mattress type works, just like some find one mask great and another doesn't.

It is a great thing about this place - we can all report what worked well or not for us, and you have more options to consider for your own situation.

 

[MJT]

Laurie, Kim and Tillie- your posts are helpful and I especially appreciate you taking the time to send me links. I should take a picture of the duck-taped pillow/wedge configuration we landed on about 45 minutes ago...
Tomorrow I'll be sure to let you know how well this worked. I don't have high hopes for 40 winks.

Mary, we did message the clinic on the portal! Progress!