Toileting advice

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vltsra

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657
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CALS
Diagnosis
11/2015
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US
State
CA
City
San Diego
Seems like we've too quickly reached a point where my PALS is no longer able to take the few steps to the commode and then back again. He fell yesterday after toileting (luckily I had already cleaned him). We're in a bind here because we have the bathroom completely torn up with no access to his regular toilet, and don't yet have a Hoyer Lift although we have discussed it and I've pinged the local ALS Assoc. rep about it.

So here's my question - have any of you CALS dealt with a PALS who is completely bedridden and unable to use commode or toilet? I'm looking for suggestions to get us through the next couple of weeks until I can manage the situation better. We tried the bedpan this morning with fairly disastrous results that necessitated an hour of cleanup and him basically being miserable. My weekday caregiver suggested bedpads but he seems to want to stay in his lift chair.

V
 
Does he have the arm strength to use a walker to support some of his weight and or the leg strength to do a pivot transfer? We were able to transfer my husband without a lift for quite awhile to a bedside commode from his bed and lift chair. We put the commode close to either where all he had to do is stand and pivot 90 degrees with us helping him stand and maintain balance and he was able to use the walker for added help to do so.
 
Unfortunately that's the biggest problem. Very little arm and leg strength. Otherwise we would be able to more easily use his commode.
 
I hope you don’t mind a PALS responding too as a variety of inputs may help here. I’m in the same situation and need a Hoyer to get off the commode.

Without a Hoyer, for a BM, consider rolling him on his side on the bed or lift chair with a couple of waterproof chucks placed underneath. Put on gloves and administer a glycerin suppository to induce the BM (if needed) and also consider adding daily prune juice to his diet.

I assume for urinating, he’s using a urinal and a condom catheter.
 
Manipulating the bed or wheelchair so he is in more of a standing position works best, with a long neck hospital-type urinal.

I can't add anything to the BM advice, but once you have the Hoyer, you will have the option of hovering him over a toilet or a freestanding commode or bucket. Hopefully the ALSA or MDA has a loaner; if not, I would list your need on Craigslist, Freecycle etc. Lifts can also be ordered on line if you are able to accept partial and retrospective reimbursement.
 
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Hope this helps ,
ALS, male, 160lbs, 5’9”, paralyzed from the shoulders down. Sleep/live in a power recliner/lift chair. Toileting/bath tips:
1) I don’t have a very spacious apartment, but there is enough room for a rolling commode chair to go over the toilet. GET A TILTING ONE! This allows for lowering me into position on the chair while tilted back and gravity does most of the work. One person does this with practice. Without the tilting function it is very difficult/impossible to get me all the way back in the seat. I use the Showerbuddy SB3T. I bathe, do my daily cough assist breathing exercises all from here. Flushable wipes, soap and water, no bidet. Squeaky clean.
2) Sponge bath - Dr. Bronner’s - Pure-Castile Liquid Soap Citrus. Worth every penny. I use this for body/hair. Not drying and rinses easily. Was using crappy soap and it was building up and I thought I had dry skin and dandruff. Switching soaps and it’s never been an issue since.
3) I use a Drive Medical Padded U Sling. I wear flannel pants with a modified fly - a little longer with velcro. Happy to be a guy. Going #1 is easy, sorry gals. Partially pull down on hips, recliner/lift chair in up position with caregiver in front, lean me forward and place sling behind back. Lower chair, finish sling/leg placement. While in the air, pants go about 80% of the way down. Lift to shower/commode chair (tilted back). Lower down,pants down completely. Tilt forward and head over on top of the toilet
4) Currently using Lumex Hydraulic Patient Lift, LF1031. It’s pretty small and works well. Nothing fancy and not expensive. But reliable. Have used 2 different electric ones in the past and one had a problem with the charger.
5) I eat twice a day, fairly healthy, but more important is to drink enough water. I take a probiotic every morning, small dose of vitamin d3 to make up for the lack of sun and a magnesium supplement which is good for bm regularity. My system moves slower than it used to from the sedentary lifestyle, but being consistent has made my bathroom trips low stress and reliable at the same time every day. Gotta be regular to get regular
6) Transitioning to the lift was intimidating to me at first, but turned out to be pretty simple. I never had any help from a pt. Maybe it would have been even easier. That’s never been my style. Hope some of this makes things easier for others
 
Hi, I am also a person with ALS, paralyzed from the neck down. My care givers use a small plastic bed pan that is wedge shaped. We retrofitted small pipe insulation over the plastic edge that slides under to protect my skin they also place half of an adult diaper into the bed pan (we just cut up a few ahead of time. ) they literally bend my knees and slide the wedge end under me. I am a girl so I don't have the luxury of using a urinal, but everything is absorbed in the half diaper for easy cleaning. When I m done knees up easy wipe and slide out. No turning, no sloshing, no spills. I hope this helps.
 
I always wondered about what I would do as a girl. Thanks Dee Dee. What do you use to access the computer and type ? Just curious, 😀
 
My speech therapist hooked me up with gaze technology and I have a tobiidynovox. It takes a while to type, but I am so thankful. It has given me some of my life back. Thanks for asking Jimi
 
Thanks for sharing. I have an eye gaze computer, but because my head can still move I find the Eviacam head mouse program to be easier and less sensitive to positioning. All the best.
 
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