bed positioning

[affected]

I still can't get my PALS into the hospital bed he insisted on having in place of the first hospital bed we got.

He does have a lot of shoulder pain, but my concern is his bottom is just sagging bits of flesh and is going to start breaking down so I have to get him off it.

So I'm looking for advice in positioning methods anyone has used with electric hospital beds and PALS who can't reposition. Thanks in advance

 

[Barbie]

do you have one of those air mattresses that automatically inflate and move the patient? Also have heard that sheepskin is nice too.

What do you mean you can't get him in it--he refuses or you can't transfer him?

 

[mrvaughan]

Is there someone that can help you come move him a couple of times a day? Or if he refuses to be in a hospital bed, is there any way you can bend his knees and be able to keep them up, that will change where the pressure is on his bottom. Are you able to have someone help you position a pillow under a hip so he distributes his weight differently? Good luck to you.
Mary

 

[lgelb]

I'm confused as well, but if the issue is he can't turn or roll, welcome to the club. As long as your bed can tilt/raise in various spots, you can use pillows, bolsters, foam belts and heel protection boots, better described in some of my previous posts. Some people need some kind of mattress topper or overlay (I assume you have a medical grade mattress of some kind?). The options range from memory foam to sheepskin/wool, alternating pressure, static air and so on. Something with some give but also some support. We use foam pieces for the elbow, a Roho pillow w/ a sheepskin on top, the aforementioned boots and at the moment a cheap memory foam overlay (doesn't have to run the length of the bed; few overlays match up to my husband's 36x84" bed). We use a wheat-filled heating pad at an angle (on the pillow) to hold his head in place.

With enough pressure relief and periodic repositioning by you of the really sensitive joints (in my husband's case, neck, elbows, ankles), you will be fine. If you see a lot of wear & tear on his butt, the wheelchair is actually a more likely culprit (though certainly you will always inspect when he gets up) and there you have to look at configuration/seat cushion. Cutting down sling time if/as applicable may also help. And whatever material his butt rests on at night...if his is bare skin on a fitted sheet, look to see if sweat is building up, as when you use a sheet that is too warm for the room.

 

[affected]

Thanks for the answers so far and sorry it did sound a bit vague when I read back on my question! I'm in a bit of a fog as we have had visitors staying for a week now, that's my excuse and I'm sticking to it!

OK here is the situation in hopefully better clear detail.

We have a hospital bed with alternating air mattress. It is that he refuses to get in it that is my problem. We also got a pwc recently and he refuses to use that as well even though he asked for it and said at the time he would use it. We have a roho for it and it has tilt functions to change pressure. Not much good when it now is just parked in the lounge room being ignored. He thinks that if he starts using it he won't be using his legs enough and they will stop working. Of course, his legs are barely working, but he does walk with a walker and with me behind catching him when he goes sideways.

He sleeps on an electric recliner chair with a roho and full body length medical grade sheepskin.

He has a padded verandah chair and thankfully has just accepted the 0 ring cushion on it, he had refused to use that also.

I don't have anyone who could help me move him, and I would be happy even if he would get in it for a few hours afternoon sleep to start with, even happier if I could get him sleeping in there at night.

He still has bruising on his left shoulder/underarm from his last fall which was nearly 4 weeks ago now, and he may have cracked a right rib (didn't show on xray but was very painful on one rib for weeks), so this really put him off the bed which only arrived a few days after the fall. (he also split his head open and damaged a hip and had a large fluid lump for nearly 3 weeks).

In the recliner chair he can change position enough I think to keep some pressure off his bony backside. But with christmas day etc, he insisted on how I set up the furniture and his chair and he pretty much refused to move out of that chair all day. That has taken his slowly getting sore backside to a situation that is concerning me. I keep telling him that if we don't get him off it for at least some periods each day it will really break down and he will be bed-ridden until we can fix it, but with FTD they just can't seem to put cause and consequences together properly.

I did get him to lay in our bed with me for a little over an hour this afternoon, with pillows positioning him slightly on his side. I was so exhausted I fell asleep fast, and when I woke (to visitors arriving back from the shops) he said he hadn't slept and was in a lot of pain.

It just seems to happen here with so much equipment, I have a garage room full of stuff that has been ordered and lent to us that he refuses to even consider using. I feel so guilty that we have all this stuff and most of it doesn't get used!

The main pain problem in bed for him is his shoulders which are terribly frozen, and his arms creep up into a foetal-like position and they can paralyse completely for a bit when he first wakes up and I think this scares him.

I know it's mostly trial and error to find what works, but he so often won't participate in trials! A little while ago we had him in a palliative care unit for pain control and they got him sleeping in the same bed and mattress we have now, but he came home and went straight off all the meds they worked out with him and by the time the bed got here, well he refused to try.

Danged hard!

 

[mrvaughan]

I run into the same thing, so unfortunately I have no answers for you. The best that we have found is a lift chair recliner and he has been in that for a while. Unfortunately, when he is incontinent, it is very hard for one person to get him changed. Sorry I have not much advice on this, but know that you are not in this alone. My husband refuses just about everything that people or doctors give or prescribe for him. I am sure it is a way to control when things are not so controllable anymore.
Mary

 

[affected]

Thanks Mary

Yes it is a control thing and part of the FTD I'm sure. He will ask for equipment or agree to some, will even let OT or someone put it in place in the house, show him how to use it, then when they leave tell me to get it out of the house. *sigh*

 

[Barbie]

i would love to get one of those alternating air mattresses. Can they fit on a regular bed? we have a split king tempepedic so he only needs a twin sized--would it go over the mattress we have or replace it? and are they covered by medicare?


Have you tried just squeezing in the hospital bed with him maybe at nap time every day for a week or so, then maybe he will agree to use it at night?

 

[affected]

hey Barbie

The one we have is the actual mattress, not an overlay. The motor is really quiet, and it's quite comforting to sleep on really, I slept on it one night early last week as I had lots of my kids/partners here so it made sense to give my room to a 'family' and I slept on the hospital bed hehe

I guess it could work on a split king sized bed.

Yeah, I do lay on it with him when I can coax him into it. Today I got him there for 1.5 hours. Ya have to love this - when he first woke I asked if he had slept well and he said yes. I didn't actually mean to repeat myself, but about an hour later I asked again had he slept well and he said ... you guessed it ... no, not really.

I had a million pillows of different types holding him in place :idea:

 

[AKjo]

Tillie, I have "saved" (for future reference) a couple of suggestions that others have offered on this subject. I think I will be needing to try this advice soon myself:

My husband had some boots with fleece and side braces, he hated them. He had back pain, and could not move at all in bed, he slept through the night and never had pressure sores. This is how we did it, 5" foam mattress and and a pillow top mattress pad. The head of the adj. bed was raised about 6". I would lay him in bed, then use a long body pillow under his thighs, the ends stick out and prevent the hips from splaying, then two pillows under his calfs, smooth all wrinkles, with the heels just off the end of the pillow. Last a pillow against the soles off his feet between the foot board, prevents the covers from pulling the toes down causing calf cramps. Looks kinda like you would be sitting in a kitchen chair. It seems to remove the strain on the lower back and also reduces pressure on tailbone. It also reduces swelling in the lower legs from sitting in a wheelchair all day. Hope some of this may help you get some sleep, this worked for us for over 5 years with no sores and no turning him thru the night. penny1

I'll include the link for the second, which is also on the "Tips, tricks, and gadgets" section. Phil might have something to add, since his dear Annie wrote it.

https://www.alsforums.com/forum/tip...how-i-learned-sleep-without-turning-over.html

 

[ottawa09072013]

I originally had a difficult time accepting the idea of a hospital bed. My GP suggested that I use it for day time use. We have a ceiling lift installed on a long rail that runs over both beds (hospital and our queen).Our queen is an i-comfort memory foam. At night I sleep in the queen with raised head pillows. The hospital bed has an air mattress. Day time is my hospital bed or wheelchair. For now this works.

 

[affected]

Thanks for those tips Jo, really helpful!

I think we are solving part of his 'real' problem with getting back into the bed - I think it is that he feels he is going to be 'shut away' in a room.

I say this because yesterday he said - how about we bring the hospital bed out into the lounge room. We were going to have to get part of a wall cut out for a new doorway the pwc would fit through into the room the bed is in now. He uses the TV for some comfort, as he has found it very difficult to accept not being able to sleep in bed with me. So this again I think was part of his resistance. If the bed comes out to the lounge room, then he can still use the TV.

So now just trying to get his son to come over this weekend to do the big furniture move around, and with luck we will get him off that backside more!

Now I need to get looking at foam wedges and sheepskin booties and stuff. The million pillows are ok, but I can see that some wedges will do better in places.

Thanks all!

 

[zoohouse]

Tillie,
My husband has been really reluctant to move into a hospital bed, because he wants to be next to me, which I totally understand. But now there are so many pillows bolstering this, and propping that, that we are blocked from each other anyway. He has noticed that it is really hard on me to work on the side that is in the middle, so thinks it is a good idea. I am looking into getting a day bed for myself so that there is still room for him to get around in the bedroom with his power wheel chair. We are waiting to hear if his foreign benefits through the VA will pay for a particular bed that I found. I really do miss holding his hand at night, but it is more comfortable for his arms to be up on pillows.

My husband lives in his wheelchair during the day, as he finds it the most comfortable. He has full run of the house in it, so he is pretty content. We have been blessed.
Paulette

 

[affected]

@ Paulette, I totally understand and I miss my 'old' husband in the bed, but I'm afraid I don't miss the PALS in the bed.

The pwc won't get through our house to our bedroom, hence setting up the hospital bed in a different room.

I don't know how many times I've rearranged furniture throughout the house and have been putting stuff out in the garage for months too. This disease just doesn't let up, you adjust and work something out, then bam it progresses another way and you are adjusting again!

 

[zoohouse]

Just got the OK for the Pro-Bed, but it will be a month before we can get it. My joints have decided to really act up this winter, especially my hands and Rt. knee, so I am finding it hard to crawl across the bed to get his sling on properly. I had been going to physic, but I just don't seem to have any time anymore.
Tillie, you are so right about the rate of change. It is near impossible to stay ahead, as it is hard enough just to keep up. My husband's progression seems pretty fast, but now that I have figured that out I am looking farther ahead for what is needed. Although, I am not sure there is much more equipment that we will need, more the technique that we use. We hope to be able to shower him even when he is totally reliant on the NIV ventilator, but I am not sure how that is going to look. Thankfully his Trilogy is very mobile, but the hose can only be so long, and I don't want to get it wet. It may be that we will have to use the tub buddy over the tub, or make a comfortable seat that he can sit in the tub with, as there is more access to the tub than the shower. I have been keeping him in his sling while I bathe him, but he does not find that very comfortable. He showers 90% of the time.