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Mageejj

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My father has ALS/FTD. He is currently wearing depends 24/7 for his incontinence. Every night he soaks the bed and himself. Shirt and pants included. Does anyone have any tips or advice? We have the washing machine and dryer running all day trying to keep up with the bedding and wet clothes from the night and accidents. Thanks!
 

Annie's Phil

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Have you considered a condom catheter? There's another thread where folks have been discussing this topic title "Somewhat embarrassing". It's under "Tips, tricks, and gadgets". Also, there are much better disposable diapers than Depends. Annie use Abri-form, and they were very much better. Do you put a waterproof bedpad under his hips. You can use disposable ones, or better, get the washable kind. They're also very useful for the caregivers positioning him once he's unable to do that for himself.

I wish you well.
 

designdiva

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We are having this same problem with #1 and #2, though it is not every night like what you are dealing with, we bought a good mattress cover for about $30 from Walmart (keeps the bed dry but doesn't feel like laying on plastic) it still means doing laundry but at least it isn't soaking into the mattress and we also keep several sets of sheets on hand so we don't run out. My step father hates all the diapers we have tried and will not wear any I have found other than the depends and will not usually wear those until after he's already had an accident because I guess he keeps thinking it won't happen again and he doesn't want to be uncomfortable. Thanks Phil for the suggestion of the Abri-form, I will have to check those out to see if they are something he could live with. Mageejj, hugs to you, I know it is exhausting and just another thing to deal with.
 

Nighthawk

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That seems to be so common on PALS.
I also have this problem at home when I am approaching the bathroom. It's hard for me to hold back especially when I am closer to the bathroom.
It looks like these catheters could be a solution for me as well.


Carlos
 

ottawa girl

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I too was having accidents! Seems like I get one "notification" and whammy - go immediately or else. The "or else" usually happens just as I'm almost there! Frustrating.

My doctor recommended I go more often, even when I don't need to. She explained the bladder is never really empty. I've been doing this for the last month or so, and it's really working for me. No accidents and fewer sudden urges.
 

designdiva

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Thanks to Carlos and Elaine for explaining this a bit, it is hard as a caregiver to know what is going on with someone else's body and my PALS just gets mad and doesn't want to talk about it. Although it doesn't change the circumstances it does help to understand better, I couldn't tell if he didn't know he had to go or just had to go so suddenly that making it in time wasn't happening. I am sure it is a really hard thing to be going through and no one wants to talk about it, my heart goes out to both of you and I'm glad you are seeking and finding ways to help cope with this.
 

Mageejj

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My thanks to Carlos and Elaine too! It's extremely helpful to hear your experiences. We bought some Abri-form diapers and tried them on him last night. He had soaked himself, the sheets and the two waterproof pads and he was still lying in a puddle a half inch deep when he woke up. I've never seen a puddle before. This has to be an insane amount of urine to result in this. The Abriform was totally soaked and it had absorbed a ton. We've been taking him to the bathroom every hour during the day and I've only heard him urinate a couple of times in the past few weeks. He rarely wets the diapers during the day. It's like his body holds it all day until he falls asleep. I don't know what to do. I guess the catheter is our next option but I'm afraid with the FTD he won't leave it alone. Has anyone else been unable to go unless they're sleeping?
 

designdiva

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I don't know if this helps but my PALS had been going to the bathroom very frequently (about once an hour or so) for a couple of months and now rarely goes though there is more urine when he does go. He will try to go more but seems to have trouble getting any urine out though, we have had a urinalysis done to check for any urinary problems (UTI, kidney stones, etc.) and there doesn't seem to be any. He doesn't just specifically go while sleeping but we have seen a drastic change in amount/frequency. I am not sure if this has anything to do with the ALS or not, I asked the doctors about the incontinence and if it was related and they told me that when the bladder is full it sends a signal up to the brain and usually the brain will send a signal back telling the bladder to wait until an appropriate time but with ALS sometimes that signal doesn't fire and the bladder just goes whether it is good timing or not... perhaps it is the same with the bladder not knowing it is full and needs to go even when the brain is trying to tell it to...? I am pretty sure that ALS does not affect the mechanical functioning of the bladder though (the bladder will not atrophy like muscles do) from my understanding. I hope you find a way to work around it soon, sounds like you are having to spend a good deal of time cleaning large messes in the middle of the night, that isn't fun for anyone :(
 

Nighthawk

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@designdiva:

Thanks for your informative post.

Although, ALS doesn't affect directly the bladder muscles it somehow messes up the signals that go from the brain to the bladder telling the bladder that it's the appropriate time to get empty.
That's why I've had these unwanted "accidents" specifically when I'm just a few inches from reaching the toilet.
That's why a catheter makes sense to me.


Carlos
 

Nikki J

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Does he sit up during the day? Sometimes lying down results in hemodynamic shifts so the bladder really does fill up quite suddenly. I had a friend who was an incomplete quad from trauma who had to be intermittently vatheterized so she knew her bladder was empty. When she went to bed then a hour later she would be really full ( close to a liter)

Any remote chance of getting him up an hour or two after bedtime?

Sorry this is so hard
 

lgelb

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My husband now finds it easier to urinate while hanging in the sling, into a Uribag (which can also be used anywhere else). I don't know if you've tried that route in the morning and before bed.

And when in the wheelchair, we tilt all the way up and then recline back, to emulate the "natural" position.
 

10steps

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As others have mentioned, I'd highly recommend the texas/condom cathedar . If you use them, try to convince your PALS to drink cranberry juice just to ward off UTIs. My husband wouldn't drink the cranberry until after his first uti...then he was always determined to finish his cranberry juice. Also, as a side note, baclofen may have the side effect of urinary urgency. Bascially you don't feel like you have to pee at all and then suddenly it feels as if you totally have to pee and have been holding it for an hour and you can't help peeing...especially when you can't move fast.
 

creesmith

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My husband has a Foley catheter. It has worked great for us and we have an attachment that we can use to change connections and use a smaller leg attached bag for concealment for going to the doctor. The catheter allows him to rest better and only has to be changed once every 3-4 weeks. I just empty it several times a day. We still use Depends because he cannot control his bowels, but we don't have to change the sheets as often. Our Palliative Care nurse actually made the suggestion to our physician because my husband can no longer move and is on Trilogy 24/7.

Hope this helps.

cresmith
 

Nighthawk

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@cresmith:

Thanks so much for your very valuable suggestions.
They will surely help me with my pee incontinence problems.


Best regards,
 
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