Just me again.

[Pkmado]

I write in my notebook an then cannot remember if I ever even posted so this is from Jan. 25.

Hello everyone. I have been focusing on the bed positioning thread. My Pals has had new difficulties especially with bed positioning. Phil still has use of his legs. His upper body is becoming progressively weak. Swallowing difficulties, just purchased a dysphasia cookbook. Can no longer feed himself, drinking that beer out of a straw. His arms almost completely useless. These we can work on together.
He is able to turn in bed with great difficulty. He turns over and over all night. Each turn involves untangling him in the bed sheets the hoisting his hands up with his knees to support his head. He has a molded pillows to help with that.
The time has come for a better system. I have read and re read posts but feel lost in a sea of infinite possibilities. He is on regular sheets now. He is so thin I think he may need something softer. I am assuming the bed itself will be costly. This is ok we can afford this. I just want to be sure the right choice is made. Sleep Number? Probed freedom bed?

 

[Pkmado]

Anyway things are moving forward or backward depending on how you see things. Sleeping has become so difficult for Phil. He cannot get comfortable. Understandably so. Part of what makes it difficult for him he is not open to suggestions of any kind really. He has one pillow, molded memory foam. It took well over a year to get him to use this.
Yesterday we went to the sleep number store. We went into shock with the price tags but this is what we need to do now. Only upsetting because I feel he really needs the "pro bed" but he told me we probably will need that one in two years or so. I don't see this as denial as much as a coping mechanism. So we will most likely go for a set of the twin sleep numbers rather than a split king so as Phil pointed out we can move one out when we move the pro bed in. That is in two years of course. Getting ready for PEG surgery which will be Feb 24. Bypassing the VA and will go with recommended surgeon recommended by Hospital for Special Care. We have to wait for him to return from Dubai where he is lecturing.
His not being able to sleep is really unsettling. No escape for him. Coughing but cannot convince him to try cough assist still sitting in the box. He is exhausting himself just trying to clear his airways. Life goes on with ALS.

 

[Barbie]

Pat I understand where you are coming from. I have been trying all sorts of things lately to make my DH comfortable and it is making me grumpier and grumpier. We have a tempepedic split king bed. we bought it when my husband first got sick because of the ability to raise the head and feet, and I hate the thing. so hard! I have had a thick pad on top forever, but just got an alternating air pad and some other goodies. Not sure if we are going to keep using the air pad--I am going to turn it off tonight and see what happens. He is loving his new memory foam side sleep pillow however. says it really relieves the pain in his neck, shoulders and ear quite a bit.

My husband can not roll himself and has no use of arms. legs can move, but not in a substantial manner. I really know what you mean about the untangling --it is so exhausting for both of us. makes it hard for me to function the next day at work after 2 or 3 wakeup calls. I keep thinking there must be a better way but I have seen cals writing about this for years. Paulette calls it the pillow dance and that is a good name LOL.

 

[Pkmado]

Barb, every time I think of you and all you have been up against and soo long. Work kids and I love your advice to everyone to make you time. I have not done that.yet. I only work part time. I work 3 days, every other for about 5 hours and feel the job gets me out. I so look forward to work and work with a great bunch of girls.
We bought the sleep number twins. Price took my breath away but others commented they love the beds. Not sure about the pals but the cals love them.
What kind of side sleep pillow is your guy using? I will try anything for Phil. We are up at least 3 times a night. He can turn over with great difficulty but then has to be tucked in. He just fights it still. I know he can't help it I just think he would have an easier time if he just relaxed and took in some suggestions I pick up here. Thank goodness for this space.
Thanks for the reply.

 

[affected]

It sounds awful even to me when I say it but the hospital bed in another room has been a huge help for me. I no longer get broken sleep (though he will reach a point he will need to be turned at night), he sleeps in one position but adjusts the bed with the remote. When he can no longer use the remote it will change again.

I miss my old husband in bed with me, but I don't miss my PALS in the bed. I am always warm in bed, he is cold. Being unable to roll over and do anything with the blankets meant a constant night of struggles. He would complain that the blanket was bunched up the middle of the bed because I don't want it on me, we tried single blankets, no top sheet, all kinds of things, but you are woken by the grunting, groaning, gagging, coughing, attempts to move, swearing because he can't do it etc etc.

It isn't a perfect solution, only a cure and return to the old him would be perfect, but I so need my sleep. I'm constantly exhausted now, if I can't get some straight sleep I'm dangerous!

Of course no solution that works actually works for long either ...

 

[vlcare]

The hospital bed has been a huge help for us also. I sleep in the guest room nearby and get restful sleep, knowing that my husband will ring his bell if he needs help during the night.

The hospital bed allows easy (both sides) access when changing bed linens or bi-pap adjustments or medication help or power lift use or clothing changing--not to mention the fact that the semi-electric beds also give the patient immediate control over their comfort level.

Medicare pays for these beds on physician recommendation. I bought a memory foam topper for the mattress and my husband has never once complained about being uncomfortable.

VL

 

[Rhonda J]

Hello.. so sorry for the problems you are having that this disease has caused. My husband has a hospital bed but before he got that bed, he has been using silk sheets, it makes it easier to move him and turn him. He has an air mattress on the bed.. it is an alternating bed..and can be changed to more or less air...hope that helps..chin up..

 

[Santa joe]

Got rid of the Medicare provided mattress. What a piece of junk. One of the springs broke - did not come thru - but put a sore on his back. Still dealing with that and it was 4 months ago. I was given a nice Bamboo memory foam mattress and it has done wonders as far as comfort. I also purchased Micro Fiber sheets from Target. They are super soft and work great. Uninterrupted sleep is a thing of the past. It does take it's toll after awhile but I do take a nap when he does, it's the only thing that prevents me from collapsing at the end of the day. I'll clean the house another time.LOL

 

[Barbie]

The pillow is called Sleep Innovations cool contour memory foam pillow. got it on Amazon for $45. Only thing bad is it is small--I wish I could get one king sized.

 

[rosec]

We have been sleeping in separate beds for more than three years now, ever since we moved downstairs, my PALS in his semi-electric hospital bed, and I in a regular twin bed. I would say for the past 18 months or so, I have been getting up 1-3 times each night to help him turn.
Talk about not being open to suggestions: his cousin gave him the $45 pillow Barbie is talking about but he down't like it. I got a memory foam mattress topper for his cheapo mattress, and that too is gathering dust in the 'master store room' upstairs. Then when he signed up with hospice in December they sent him an alternating pressure air mattress, and he sent it back after a week.
Whenever I put him to bed or adjust him, I have to go through a check list: Pillow? head? bipap? legs? right arm? left arm? If I forget something, then oh! the sky is falling

 

[zoohouse]

So, husband is in his new Pro bed, and I am in my new twin bed. It has been a tough few days getting used to everything. I like to sleep with my arms away from my body, but then they flop off the bed. Since it is a new bed it almost feels higher in the center and like I might roll off. The first night I was so frustrated I wanted to get up and jump on it for an hour to loosen it up. It is getting better, now if only I could find a blanket that is not to hot or too cold. We hated my husbands bed the first night, but the CEO's of the company delivered it and stayed 3 days to make sure we had it all figured out. Tim actually is enjoying being on his sides, and it can be adjusted to how much onto his sides it will go. The voice command is really cool, and he can call for help and a module rings in what ever room I plug it in to.

He just called to say his arms were too hot, and decided to have the bed go flat. He can also control a lamp by voice, and make a phone call all by voice, and all this with his full face mask on. There is a bit of adjustment to make so that the mike, and the sensor are in the right place. When we get our new TV he will be able to control it also verbally. I realize that this would work very well for someone who can't speak, but it can be programmed so that a certain sound can be a command.

 

[lgelb]

For those who, like us, can no longer use memory foam (too soft) for a PALS, nor an air overlay (too hard and/or mobile), you may wish to consider our current topper, which can be used on any kind of bed. It is the "slab foam" (not polar foam) available on FineWebStores, in a variety of sizes. They warn that it's as firm as a couch but I just ordered one for my own adjacent bed; it's supportive but comfortable. You can choose 1, 2 or 3 inch heights. We both have 2 inch; with 3-inch, sheets begin to bunch in my experience and 1" is simply not enough.

In any case, I would make sure the PALS has a medical grade mattress as muscle atrophies. For sheets, we are using flannel now as my husband is constantly cold, with a heated mattress pad.

 

[Pkmado]

The pillow he wouldn't try because it was too hard now has its own name. It's called where's my new pillow. Thanks for the suggestion!

 

[Barbie]

Pat I was going to ask how it went! I am glad he likes it. My husband goes thru things too like yours Rose...we had to send our alternating pressure pad back.

getting in bed is like doing a pre-flight check--same thing; head, neck, powder, fluff, stretch, nose, ears, pillow under arm, pillow between legs, pillow behind back. worst is the middle of the night roll and going thru it all again!

Paulette that bed sounds so awesome! my gosh my husband would love it just for the technology! did you get it thru the VA?


Hamlet:
"To sleep, perchance to dream-
ay, there's the rub."