Incontinence Problems

My husband seems to have such a high volume of urine in the middle of the night. During the day he can wear a guard and not soak through his clothing so that's not a problem. During the nights he is soaking through super absorbent diapers. I'm up with him all night helping him change. By morning there usually is 4-5 soaked diapers on the floor next to the bed. I've tried all different kinds of diapers and they all soak through. I just tried the external male catheter (maybe we didn't put it on good enough, but he took it off shortly after getting into bed. What can be the solution for this added problem. If I have a commode next to the bed, he cannot get out of the bed quick enough to reach it. Is this just another terrible side effect of PSP? Is there no solution to this? I'm so sad for him.

Joan

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Joan why did he take the convene off? Did he not like it or was it something he did without knowing he was doing it? If you could get him to keep it on it would be great. My husband found them really good. It was only a couple of months or so before he died that he started to take them off and that seems to be common.

It must be exhausting for you too? The only other solution is a permanent catheter and although it will solve the existing problem they can lead to urine infections. Maybe someone who used them can comment?

Marie x

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Hi Marie I don't know why he took it off. Will try again, though. Anything to make him comfortable. Joan

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Hi. I had the same problem, so we now use convenes held on with special pink tape, never know one to come off yet, they are brilliant, it's never him being wet that wakes me up now, always something else he needs or feels he wants.

Hope you give them another try

Love and hugs

Helen xxx

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Hi Helen,. I got on line and ordered the convenes. The one I have called freedom is very sticky and I think that is freaking him out. Can't blame him. I just want this all to end, but then he'll be gone and I can then fall apart. Joan

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Joan, I feel your pain. Convenes seem to annoy PSP people. I guess it is the loss of dignity that having to wear them brings. I also know what you mean about wanting it all to end, you do and you don't. Thats whats so rotten about PSP - it attacks you as well as your loved ones.

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We had same problem. It was one of the on-going battles.

Chris took convene off often. It made me so cross. He said he didn't know why he did it - it was in the early morning and I think he did it automatically but it meant he grabbed his penis and sprayed every where !!!

Now he doesn't take it off as he has deteriorated. I cover him with a blanket with his hands on top, but under the quilt. I'm not sure this would have stopped him when he was stronger.

Jean xx

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It's just so sad, Jean. Then I feel so bad complaining whe I know he's getting worse and every stage just scares the hell out of me.

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Convenes have made our nights so much better, not having to get up every hour to use the bathroom. Sometimes my husband takes it off in the middle of the night and sometimes it comes off by itself. But in the long run, it's a godsend. Anything to be able to get a couple of good hours of sleep every night - I'll try it. Had a meeting with Visiting Angels this morning and was so glad to hear the home health aide has knowledge of the convenes. It wasn't the convene my husband took off last night, it was his pjs. He turned them inside out and then put them back on. I laughed when I saw him this morning and asked him what he was doing last night with his pjs. His answer was, "I was looking for a head gasket!! -----Guess I was dreaming." (He's was a mechanic.) Just a little humor to help us with the day.

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Made me laugh. Reminded me of when Chris had these

" adventures " at night !

Now he may have them but can't tell me.

Jean xx

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That is funny. I think I need to to call the Visiting Amgels. Is it expensive? I'm doing it all myself and maybe that's why I feel at a breaking point.

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Hi Joan

When Archie had a convene on that came off day or night then the convene nurse came and tried another one and this one is more sticky and cannot be taken off without a spray as taken off without would hurt and it's ok now

Hope you can find a solution for this

Sue x

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Thanks Sue..

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David couldn't cope with convenes, as he penis was retracted, so the only option for him was pads. 99% of the day he was fine, but at night they always leaked but he did also seem to pee more at night, maybe the body is more relaxed when lying down ?

We used bigger, thicker pads at night but even they couldn't cope. I had to change the sheets every single day without fail, I had a party those odd days where I didn't need to :D

He tended to "overflow" the pad in between me leaving for work and the carers coming in for the morning visit, we never did really find a solution to this as even if I changed him before I went to work he still seemed to leak.

I do wonder whether David wriggled about a bit after going to bed, thereby moving the pads around a bit and creating gaps for it to leak out wheras in the chair he tended to sit pretty still on his backside, so the gaps never appeared.

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Hi, I am afraid this is PSP at its worst! I tried everything. The only thing that saved us, was a Catether fitted. Not pleasant, but he stayed dry, no more trying to get to the toilet and failing, no wet beds, wet floors, none of this constant feeling of needing to pass urine. Of course, there is a risk of infection. Steve was admitted to hospital several times, but I still wish we had given in earlier. The improvement to both our lives was enormous, but far too late for us to enjoy it.

Lots of love

Anne

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Yes, it's a terrible strain. I talk to you and so many here have already lost their loved one. So all I'm doing is trying to make him comfortable while I wait for the next obstacle to come. Some days I can't function and today is one of them. Thanks for still posting.

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Count the days you can function, not the ones you can't. It's a lot easier! Any way, from this side of your post, sounds as if you are doing OK, if you can keep your husband comfortable and safe, then you ARE succeeding!

Lots of love

Anne

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Thanks Anne.

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There's a medical term for this high volume of urine at night, as it's very common. If his prostate is not enlarged you might be able to empty his bladder at bedtime with a straight catheter, which you insert yourself and then remove when the bladder is emptied, a matter of a minute or two. We couldn't use the convene because of the retracted penis, and his prostate made the straight catheter a gory disaster, and he wouldn't leave the installed catheter alone...took the scissors to it, so a trip to the ER to retrieve the interior bit ensued...so we managed as best we could with a pad in depends, two layers of those. The layering pretty much did the trick, but I always had bed pads for insurance, often needed. Good luck. It's a very difficult problem.

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Thank you. He does have an enlarged prostate. I'll try the doubling up .

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We also use a depend with a pad in put up higher in the back and one in front. I have a large washable pad for under him. The pad is usually wet, but rarely the sheets. My husband no longer moves much in bed, so he stays on the pad. Bowel incontinence is also an issue now . Some lack of feeling, , some inability to communicate quickly, and also he cannot get to bathroom quickly and without help. The depends with an additional pad in front keeps him dry during the day.

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I understand there is something about the kidneys working great when your laying down~

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Hi Lacey

Have you been in touch with the district nurse, you could get your doctor to refer you, the district nurse can refer you to incontinence specialist, you would get pads and convenes and advice free then.

Good luck it's an awful problem and can really get you down.

Love and hugs

Helen xxx

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I'll look into that. Maybe I can get some much needed help.

Thanks you.

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Not sure If you are already doing this but here goes.... my hubby wears a convene and I have found that once in place it is necessary to hold the "manhood" for a few seconds so the heat from you hand helps the convene adhesive to adhere. Also I put a strip of cohesive bandage around base of "manhood" to help hold convene in place again holding for a few seconds. Jx

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No, I didn't do that. In fact, he only put it on half way. We'll definitely try the holding in place thing. He may even enjoy that. lol

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The instructions with the convene said you needed to squeeze for a minute to warm the adhesive. Best bit of the day for him !!!

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Think it must be ....!!!! Jx

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Another option is the spray on medical adhesive, you can get it on the same prescription as the catheter equipment. Hollister do it, for example. If you are using the ones with the bag rather than a condom, and cut the circle to size, it works quite well with those.

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Yes my brother has had a catheter fitted and it is so much better. There used to be at least 2 lots of bedding everyday. He is coping with it at the moment. Helps with the washing. Will see how he goes on. He has had it on for about 3 weeks now. So far so good. We are lucky as he has care on sight ( not a care home) he lives in a complex where the care is provided 24 hours. Dont know how I would cope living with it 24/7.

Carole xx

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I don't know if this would work for you or not but my late husband was able to use a urinal at night without getting out of bed.He had a railing on his side of the bed to help him in getting up,and I just hung the urinal on that where he could easily reach it.That worked well for us for awhile and helped us both to get a better night's sleep.

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I'll try that. Thank you.

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