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Tuesday, October 9, 2012

That Blasted Urge Incontinence

On Monday afternoon, we went to Outpatient Rehab. There were two 45 minutes sessions, first PT then OT, scheduled back-to-back, so a total of 90 minutes plus another half hour of travel time. In that period of time, I tell you, Bob had to use the bathroom not once, not twice, but (count 'em!) five freaking times. And every single time, he could not go...

And mind you, he actually did pee right before we left the house. So I thought we were good to go.

But about two minutes after we left the house, on our way over to the Rehab Center, he tells me he has to pee again. We walk to Rehab--ok, I walk and push, he rides, it's only six blocks away. The Rehab Center is in a separate building on the far side of the hospital campus, so I always cut through the main hospital to get there. (because, um, Air Conditioning! yes!)

To humor him, I stop by the bathrooms near the ER. I like the ER unisex bathrooms because they have this really amazing concept which is: doors that actually stay open when you open them! Wow! Instead of the usual kind of bathroom door which swings shut the minute you let go of it. A door that will actually stay put, without anyone having to hold it open, is a Godsend when pushing a wheelchair. I wish more architects thought of this.

Anyway, we stop at the ER bathroom and, of course, Bob can't pee. By now, we are running late. Because we started out late, because Bob actually peed at home before we left and that put us behind schedule. By the time I get Bob's pants pulled back up, the urinal tucked in the backpack, Bob scooted back in the wheelchair, it's 1:30, time for the PT session.

So there I am, dashing once again with that wheelchair, across two parking lots to get to the Rehab Center. When we arrive, the PT is waiting for us at the door. She pushes Bob to the hallway, where they have a railing much like the railing in our hallway, but 20 feet long. They seem to think this railing is better than the parallel bars... OK. So Bob gets up, pushing off from the wheelchair armrest, walks the 20 feet, sits back down and announces, "pee!"

Oh lord almighty. The therapist looks at me and I shake my head "no".  She asks if I'm sure and I tell her that we just came from the bathroom. Bob makes two more trips down the railing, sits down and announces, again, "pee!" I glare at him. The PT tells him to do "just two more times" and then he can go to the bathroom.  Bob walks two more times which, by the way, makes a total of 100 feet! Twenty more feet than last time. Good progress, yes!

The PT hands Bob over to me to take him to the bathroom. This time, I have to take him into the Men's Locker Room because the regular bathroom in the Rehab building isn't big enough for Bob's wheelchair. The locker room has one small stall, one urinal, some sinks and showers. I can't fit Bob's wheelchair in the stall so I always just park it in front of the sinks. Once again, lock the wheelchair brakes, help him with his pants, get out the urinal, etc. and, of course, he cannot pee.

I am not surprised at all. Because he just went before we left and that wasn't even an hour ago. Last year, the urologist diagnosed Bob with "urge incontinence" caused by a "neurogenic bladder" which was all caused by the stroke and which basically means, in layman's terms, that Bob feels like he has to go even though there is nothing in his bladder to empty... Basically, brain and bladder are not communicating. And yes, he is taking medication for it.

Anyway, I wait awhile, all the time watching the clock as precious PT time ticks away. I'm about to tell Bob that "time is up" when an old man shuffles into the Men's Locker Room, and evidently does not see me standing there, stops at the urinal, right in front of me and unzips his pants. Aack!

So I step into the stall, partly so I don't embarrass him, partly because--honest to god--I do not want to witness this spectacle. This is only the second time this has happened to me, even after all the men's rooms I have frequented these past two years. The last time this happened, a fellow came in the men's room, he looked at me right in the eye, and just whipped his you-know-what out and did his business in front of me. I just about died.

But this time, I don't think the old man realizes I'm there. So, hidden in the stall, I patiently wait for him to finish.  Jeepers, he must have a prostate problem because it takes forever...

Finally, the guy leaves. And Bob still hasn't peed. And now we've wasted about 15 precious minutes of a 45 minute therapy session. So, I get Bob put back to together, wheel him out into the therapy room where the PT is waiting. She wants to see if Bob can push up from the wheelchair and, instead of grabbing a bar, grab onto a standard walker.

Bob does not want to do this. He does not even want to try. He says, instead, (you guessed it) "pee!" Though actually, this time he says "piss" and about now, it's me whose getting pissed. So, I tell Bob to do it. Just give it a try. You can piss later. Finally, he does, but the therapist has to hold onto one end of the walker because it nearly tips with all Bob's weight on his left side. It did not look good.

That's when we talk about a hemi-walker for Bob. The PT thought they had one around somewhere, but after looking in a few rooms and closets, could not find it. I told her that Bob had one at home, collecting dust in the corner, and she asked me to bring it in with us next time. She said, she just wants to see if he can STAND UP holding onto it. Not taking any steps, yet. Just stand up.

Then the PT asks Bob if he wants to work on the Nu-Step machine. I look at the clock and there's only 10 minutes of PT left, and of course, Bob says, "No! Pee!"

The PT says, "Just a few minutes on the Nu-Step, OK?"

Reluctantly, Bob lets the PT transfer him to the Nu-Step. Where he sits, barely pedaling the pedals, looking horribly glum, making motions at his crotch because he still has the urge to pee.

Right about then, I am getting an urge too-- to strangle him. Seriously.

After the Nu-Step, it was back in the Men's Locker Room. This time, while I'm wheeling Bob into the room, this younger guy follows us in. I tell him, "we'll only be a minute" and he says, quite merrily, "Never mind me!" after which he strolls right up to that urinal and unzips his pants! GA! So I flee into the stall to hide until he's done. Problem is, I can't close the stall door because Bob's wheelchair is in the way and I still can see this guy in the mirror reflection across the room.

OK, I am dying here. And I can't believe it, twice in one day! What's with that?

Five minutes later, we go to OT. Bob still has not peed. There, Bob does not want to pick up the colored pegs and put them in order. He does not want to clip the colored clothespins to the pole. Pretty much he doesn't want to do anything except go back into the bathroom.... which we do.

And then again, back to the locker room, at the end of the session.

Now, that's five times, right? And he still hasn't peed.

Finally, we get home. Finally, Bob pees. At 4:00 freaking p.m.... We had arrived at Rehab at 1:30.... aaargh.

Well, you can bet I had a little "talk" with Bob last night. Because we had had a deal. The deal was that he was not going spend all his rehab time in the bathroom.  Because that had been a problem the last time he went to Outpatient Rehab. My part was that I would take him to the bathroom before and between and after, but not in the middle of a session. That he would wear Depends and, worse case scenario, put them to good use. And he has held up his end of the bargain, until now.

And of course, my "talk" included a few threats about catheters and nursing homes. On the mention of the latter, Bob said, "But---I love you!" which nearly, well really, broke my heart.

Last night, I woke up because I heard a blood curdling scream. It took me a second or so to realize that scream had come from me.

I had had a dream, which I really don't remember much of, but only this last scene:  I was in the water, um, the Gulf of Mexico? Because the water was really blue, and Bob was there and also his wheelchair, in the water. And we were all sinking. And I was under the wheelchair, trying to push him and the wheelchair back up, but I was somehow trapped under the wheels of that wheelchair and the weight of the wheelchair and Bob was pulling me down, down, down. And Bob was going down and I was going down and I couldn't get up to the surface because I was caught in the wheelchair wheels. Then I woke up to a scream....

Oh, it's hard to be tough. It's hard to push him. But jeepers, if he keeps this up, they will throw him right out of Rehab and where will we be then? After all the fighting I had to do to get him there in the first place... I don't know if I can get him back into Rehab again.

Tomorrow, we go back to Rehab. I'm taking the hemi-walker. If Bob can actually stand up with it, it will be nothing short of a miracle. It will be some real damn progress.

And we will see what happens.


Anonymous said...

Praying for your miracle...and a no pee session..

barbpolan said...

Wearing Depends sounds like the answer; there are times I wish I could wear them, given that I go every hour at least. Good luck with the walker!

Rebecca Dutton said...

One suggestion: Clients who have no bladder control, like people with a spinal cord injury, learn to predict when they have to pee by keeping track of how many CC's of liquid they drink and when they drink it. It takes some trial and error but would give you a ball park idea of when to stand your ground and when to give in.

One question: Is the OT asking Bob to manipulate pegs and clothespin with his hemiplegic hand? If so what activity that Bob wants to do requires a tip pinch (e.g. opening mail/box of pencils)? I would want to know what the OT's endgame is.

One wish: I would love to see Bob qualify for a home health aide. I truly don't know how you manage without some respite time.

GirlWithTheCane said...

I wish I could give you a big hug.

Rebecca's suggestions are good ones. Sometimes the Red Cross provides volunteer respite workers who will come in for an hour or two once a week (this is in Canada, mind...I'm not sure where you are.)

Take care of yourself.

Diane said...

Rebecca, thanks! The OT is working on his unaffected left hand, trying to help him write better, control it better as it's his non-dominant hand and he has trouble writing with it. He has no movement whatsoever with his right hand, arm or shoulder, unfortunately, it's a frozen, dead, paralyzed thing and OT's have all given up on it.

Anonymous said...

Diane, try getting him to stand by putting the hemi walker next to your bars just have him stand and then sit back into the wheelchair. Stand on his week side to help him back into the wheelchair.

Anonymous said...

Can I use some of the content from your site on mine? I will make sure to link back to it :)

Anonymous said...

I don't know if you had ever tried this or not but what about a condom catheter? It is less invasive than the normal ones. The only downside is that sometimes they can fall off but I suppose it's worth a try if it means more time at therapy and less time you have to spend with Bob in the bathroom.

Diane said...


Re: using content and a link. I'm not sure who you are or what site you run. Contact me, through my profile, and let me know some details. thanks!

And thank you everyone else for your comments and suggestions. We had a good day on Weds! See new post!

Kathy said...

What a thoughtful and informative post. This will be of great help to those who are exactly in the same situation.