Status
Not open for further replies.

Autotelic

Active member
Joined
May 4, 2015
Messages
33
Reason
Lost a loved one
Diagnosis
03/2014
Country
US
State
OK
City
South eastern
I know just typing that seems ridiculous but I do really need help with this, and fast. I feel like I should apologize for calling it a diaper but calling it a disposable brief might be confused with a pull-up type garment and this is not that type.

My PALS can no longer hold his head or trunk erect. It happened really fast. On Saturday morning we took him to the bathroom, using a ceiling lift and a sling that we've used for months and everything went as usual. 6 hours later when we went again he had lost the ability to hold his head erect. We’re using a cervical collar on him now.

We have a standard contour sling with head support from Sure Hands (not a product plug, just identifying it in case anyone wants to look at what we’re working with) that has head and full back support so we used it the next morning and it worked great but later that night no matter which strap combination I tried, it was like he was lying in a hammock and I could not get him upright enough to sit on the toilet. I finally tried the original sling again and scared us both so badly that I told him I was going to take it in the back yard and set it on fire the first chance I got.

He can't lay flat on his back and hasn't been able to for months. And now he can’t hold his trunk or neck erect, or use hands/arms to steady himself. Hospice suggested we use the sling to lift him up off the bed far enough to put the diaper under him and then set him down on top of it but that doesn't work because when we remove the sling we also move the diaper out of place. We use draw sheets to adjust his position but they don't seem much help with this.

Can anyone give me directions for how to get this on him without laying him down flat and with minimal rolling, or is there another type of brief/diaper that might be simpler to get in place, and/or is there a sling out there that will support back and neck enough to sit him on the toilet safely? I still feel completely ridiculous but this is a real and urgent problem. Any suggestions?
 
Last edited by a moderator:

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
7,951
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
City
Seattle
Sorry, confused. Why would he be lying flat? He has a hospital bed, right? Elevate his head while you are positioning the diaper, one leg at a time? But why is he using a "diaper" -- does he have accidents? If not, many of our members go commando, do a waist wrap, whatever positioning allows. We used adaptive (snaps on top sides) pants when my husband went out in his chair so that he didn't actually have them fully up but with a lap blanket all the way around you couldn't tell that.

A regular toilet may no longer be in the cards, as he may need to elevate over a freestanding commode, in the sling. I looked at the Surehands assortment and don't see a more supportive one there. Not knowing where he is weakest, some mfrs do make slings with hip belt-type configs, and I would certainly be using mesh (not sure if yours is) in a divided leg sling as it conforms better, but no personal experience w/ strap + sling and you could gin that up yourself (chest strap probably highest probability of success) if it would really help, w/o buying a new sling.

I'm sorry to hear of your PALS' progression. I presume when you talk about a cervical collar, it is in conjunction w/ toileting/transfers. In the wheelchair, tilt accomplishes what the collar does.

Best,
Laurie
 

Nuts

Forum Supporter
Extremely helpful member
Joined
Feb 23, 2014
Messages
2,531
Reason
Lost a loved one
Diagnosis
01/2014
Country
US
State
NC
City
Littleton
I'm so glad that Laurie responded. I was at a loss and was hoping to read responses!

We have the Sure Hands sling with head support also, and I often have trouble getting it positioned correctly so that it fits right. That's me, not the sling.

we're traveling now and I started using the middle loops on the straps because the portable lift doesn't raise my guy high enough to clear the bed easily. We can't get the lift into the bathroom, so I've been tilting the shower/commode chair (with head rest) to match the angle of the center loops on the the sling straps and then putting him into that chair. Insert the bucket and he does his business. Then I raise him with the lift and use washcloths to clean him. I miss the bidet, but I can see that this may end up being the future solution.

I've also cut open the backs of all of his pants and added Velcro straps and flaps to the backs (check out Diane's website, ALS from Both Sides, for instructions). He goes commando and I put chux on the seat under him (and in bed under him if we are concerned about timing). So far this works better for us than the diapers (I suspect they are better for ambulatory folks).

Do you have a tilting shower/commode chair with leg and head rests? If not, call the VA and get them on it.

Hope this helps,
Becky
 

Autotelic

Active member
Joined
May 4, 2015
Messages
33
Reason
Lost a loved one
Diagnosis
03/2014
Country
US
State
OK
City
South eastern
Thank you for the quick response. Up until this last weekend he had been commando, in a recliner most of the time, and we used the lift and sling to take him to the bathroom for bowel movements, keeping enough pressure on the sling to hold him upright. The sling we had been using to that point was open back with wide waist belt and split legs, with 6 adjustable straps. But he was able, with tension on the sling, to hold himself erect on the toilet. This weekend that changed so quick it was terrifying. First the neck and then 12 hours later his trunk. He's like a rag doll. When he needed just head support, we moved to the other sling with head and full back coverage, and it worked very well for the one trip when he still had some control of his trunk. The next trip though, in the middle of the night, first with the full support sling, it was like he way laying in a hammock, no matter what I did I couldn't get him upright. I thought it was just me, not being used to the new sling, so I put the old one on him and scared the bejesus out of both of us.
The diaper is because it's no longer safe for one person to attempt to move him in the lift without someone else there to assist. It's not just moving him. There's the bipap, and now in-dwelling catheter with it's hoses and bags to keep up with, a PEG tube to watch out for. And we are on our own from 8 pm to 8 am. So the diaper is a last ditch effort to have something in place when we are alone.
I am unable to lift his bottom enough to place a diaper under him. I've tried rolling him gently. Last night I got a piece of satin fabric under him and was a bit more successful sliding the diaper under with a slight roll of his body. It was still not the most elegant placement but it was fastenable.
He hasn't been in his wheelchair in months. His choice. He got into his recliner in October and stayed there, except for trips to the bathroom/shower, and very occasionally if I nagged enough he would get into the hospital bed for a few hours, until this weekend when he moved to the hospital bed, after his trunk muscles failed. This is probably more information than you want or need for the problem at hand. Basically, I can't manipulate his body well enough on my own to get this diaper in place. Our hospice doesn't have expertise with ALS. Our ALSA doesn't have expertise with PALS who can't lie flat. With his back elevated for his comfort, if I try to bend his knees toward his chest to get this in place I am causing him pain, and he feels that his airway is compromised. So I'm just looking for a safe way to allow him to have a bowel movement when he needs to.
I saw the response just after yours suggesting a shower chair, and we do have one, and that's what I ended up using that night when I was on my own. But it took me 45 minutes of up and down and changing slings and straps to get him into it and properly positioned. Now, I'm sure some of that is because it's a different sling and all new things have a ramp up time while we learn their quirks, but 45 minutes is too much manhandling. It's been 2 days now since he's allowed us to move him for any reason so I know I must have absolutely terrified him, and that is breaking my heart.
 

Autotelic

Active member
Joined
May 4, 2015
Messages
33
Reason
Lost a loved one
Diagnosis
03/2014
Country
US
State
OK
City
South eastern
Thank you, Becky. We do have a shower chair and I was able to use it that night and again today. It was easier today because I took your advice and adjusted the angle of the chair to match his angle in the sling. Laurie's response reminded me that the wheelchair is a good option here. I'm not sure why he quit using it. Inertia maybe. But we've just let him be in the recliner, because that's what he wanted, and have kind of developed our system of care around that. Probably not the best thing for him because now we are where we are. He asked to be moved from the shower chair back to the recliner today (instead of hospital bed) and I asked him try the wheelchair instead. He argued but he did it. I got into it ahead of time and matched the wheelchair angle to the shower chair and sling and just parked it behind the shower chair. So up from one and into the other.
You and Laurie were both a huge help here. Thanks so much!
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
12,068
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
Sometimes it can work to just lift him enough with the sling to slip a bedpan under his bottom to use. Then slip the bedpan out (have a bluey under the bedpan), wipe and lower him again.
You can possibly work it so that he still has the support of the raised bedhead behind his back?
 
Status
Not open for further replies.
Top
AdBlock Detected

We get it, advertisements are annoying!

Sure, ad-blocking software does a great job at blocking ads, but it also blocks useful features of our website. For the best site experience please disable your AdBlocker.

I've Disabled AdBlock