The Crazed Caregiver & The Collapsing Bed

So, the other night I was awakened from a deep sleep by the sound of Bob calling, "Help! Help! Help!"

I bolted straight out of bed. Flew to his bedside.

And when I get there, out-of-breath and heart pounding, I ask, "What's wrong?" Because, honestly, nothing looks wrong.

Bob says, quite calmly, "Just a minute."

Huh?

It takes me a minute to realize that he's adjusting the bed pad that's under him. And another second to realize that he wants me to boost him up in bed. This, when he hasn't even slipped down that far--maybe an inch. And a split second to look at the clock and realize it's 2 freaking a.m. and he WOKE ME UP FOR THIS?!

And though I hate to admit it, at that moment, after sizing up the situation, I snap.

I mean, I really lose my temper here. Because a long time ago, I thought I had made it clear to Bob that he is not to wake me up in the middle of the night unless it's an emergency, which means a bona fide emergency, such as the house is on fire. Or he's wet the bed.... Because, honest to God, I need my sleep. Without a decent night's sleep, I am pretty worthless.

So now, I say to Bob--well perhaps "say" is not the right word here, more like "scream" to Bob, that THIS IS NOT AN EMERGENCY!!, and I TOLD YOU NEVER NEVER EVER WAKE ME UP UNLESS IT'S AN EMERGENCY!, and WHO DO I LOOK LIKE? A FREAKING PAID NIGHT SHIFT NURSE????!!!! and so on.  I tell you, it was not a pretty sight.

And to punctuate this angry little diatribe, I grab hold of the side rail of the hospital bed and give it a good shake.

And the whole darn bed collapses!

Right to the floor.

Jeepers.

I can't believe it. I just broke the damn hospital bed. This is an expensive piece of semi-electric medical equipment. Which is a rental. And now, what am I going to do?

Well, the first thing I do is ask Bob if he's OK. He is a bit shaken, but OK. Then, I decide to leave the bed there, sort of partially collapsed on the floor, because I am exhausted and I will deal with it in the morning. I do check it to make sure it's not going move or anything, and it seems solid, so I crawl back to bed.

In the morning, I somehow manage to transfer Bob from collapsed bed into the wheelchair. No easy feat. Then, I strip the bed, haul off the extremely heavy gel mattress overlay, remove the not-so-heavy but awkward mattress and assess the damage underneath.

I can see where the right bed rail has pulled from the footboard. The good news is that I haven't really broken it, as I can see where the rail hooks to the footboard and I just have to re-attach it. To get the rail and footboard back together, I will have to lift the metal rail (which is quite heavy as it's attached to the electric motor) a good foot off the floor and, at the same time, pull the footboard toward it so I can hook the two together.

This is really a two person job. But there is only one person here who can do it: me. After a few attempts, I finally, finally manage to hoist that heavy rail, while simultaneously pulling the footboard toward it, line up the hooks, make the connection and just as it snaps into place--- I hear a clatter and find the crankshaft has fallen out.

Now the crankshaft runs from the footboard to the headboard, underneath the bed. This is the mechanism which raises the bed up and down. And it's somehow pulled loose and is lying under the bed.

After all that work, I have to take the footboard and side rail back apart, and crawl under the bed to, first, insert the crankshaft into the headboard then insert the other end into the footboard, and start all over with getting that blasted side rail attached to the footboard, all the while trying not to dislodge the crankshaft.

After two hours of screwing around, I finally manage to get the bed back together, get the mattress and overlay back on, and praise the lord! everything works....

I tell you, I learned my lesson, which is never, never shake that darn bed rail.

I think Bob learned a lesson too. I don't think he'll be waking me up, in the middle of the night, for a boost anytime soon. ha!

To end this post on a good note, this rather frazzled caregiver did have a couple of well deserved, relaxing days this past weekend when my sister came to visit and we even managed to spend some time at the beach...

HE DID IT!!!!!

Yes, yes, yeeeessss!! and whoo hoo!

First time standing with Hemi-Walker

OK, I admit, he is practically falling over backward and needing a lot of support and he couldn't take a single step-- BUT he got up on his own two feet and only needed support after he grabbed the walker and, truthfully,  I never thought I'd see this day! 

And this--just 10 days shy of Bob's two year stroke anniversary! I tell you, I really was giving up hope here. After all this time.

The hemi-walker was ordered for Bob in Feb. 2011 and has been sitting in the corner for over a year and a half--no therapist has been able to get him on it, until now. I really didn't think it would ever happen.

Damn, this feels good! Well, at least for me.

Afterwards, the PT asked Bob, "How did that feel?" and he said, "awful." yikes.

But the fact that he was able to do this much, certainly means Bob is getting stronger.


PS: And he got through the whole session without a bathroom break! So, my little "talk" worked.

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.

Voting with an X

Pre-stroke, Bob and I were never ones to miss an election day. But since the stroke, Bob has not voted mainly because it is a) difficult to get him a polling place and b) to complete an absentee ballot, the voter needs to be able to sign his/her name.

For over a year, Bob has been practicing signing his name. He can do it now, however, sometimes he writes the whole signature in cursive, other times he writes only his first name in cursive and prints the last name, other times he prints the whole dang thing. Then, occasionally, he gets half-way through and gets "stuck" not able to to remember how the rest of it goes....

And your signature on the ballot must match the signature on file with the Elections Supervisor or your vote will not be counted.

So, I asked Bob's occupational therapist if she could help Bob with his signature.

And she worked with him, for awhile. But still, though it is a little more consistent, he will often write certain letters backwards (especially "b" and "d"), or skip letters completely and still sometimes he prints the whole name instead of writing in cursive.

Finally, the OT called the Election Supervisor's office, who told her that Bob could sign his ballot with an "X" as long as it was submitted in this format, every time:


                                                                              HIS
                                            first name               X    last name            
                                            (printed)              MARK        (printed)

So today I send off this rather sad signature change to the Voter Registration office. But at least he will have a voice in the upcoming election. As long as he can make his X consistently the same!

I probably should have done this awhile back, but I didn't know it was possible to sign a ballot this way.

AFO, 911 & Other Disasters

I feel like I've just run a marathon after spending this whole week dashing to seven different doctor's offices, first to drop off medical records release authorization forms, then to pick up medical records. And these darn offices are spread across the city. I tell you, I put some miles on The Green Machine, though I don't know how many for sure, as the odometer doesn't work.

On one my last mad dashes, half-way home it began to rain and I'm thinking, oh crap, because I've only got one working windshield wiper, and it's a pretty jerky wiper at that. So I turn it on and, of course, you know it, there's this rather loud CLUNK! and the thing dies. Now, this is not just the wiper blade that I'm talking about, those are easy to replace, this is the whole darn mechanism: the rod that goes down under the dash which snapped. Bubba had warned me this was about to blow. I thought I had a bit more time...

So there I am, driving in the pouring rain, with no windshield wipers. I can't see a thing. The rain, plus the fact that I really need a new prescription for my glasses, but haven't been able to afford it. I am half blind. And, to add injury to insult, the darn radio fizzles out. I tell you, my knees were weak when I got home.

At Rehab, the occupational therapist has gotten the idea to teach Bob how to dial 911. She says he needs to be able to do this, in case something should happen to me. Oh my, what dismal experiment this has been. Always, when she starts this drill, she places a disconnected telephone in front of him, then shows Bob a piece of paper with our home address written on it. I guess the idea here is that Bob is then supposed to pick up the phone, dial 911 and tell them our address. Sounds simple enough. Unfortunately, our address seems to be a foreign language to Bob. He tries to read it out loud, but only gets the number "1" right. He'll look at a "4" and call it "22". So, then, the OT will read it out loud and ask him to repeat it. Even then, he manages to mangle it. After a few attempts at this, the OT gets flustered, tells me "it's a good thing you have a landline, because the police can trace the call." and asks Bob just to dial 911 on the phone. At which point, he dials our house address...

This is part of the OT's new safety kick. She has given me brochures on expensive equipment, special phones, home monitoring systems and the like, all of which pretty much we can't afford. And she's regaling me with stories like the doctor she knew, who fell in the bathtub, hit her head, and laid there in the water for three days and then, all her skin peeled off from the water....  oh god... Like I don't have enough to worry about, without worrying that I'm going to drop over dead or hit my head on the bathtub---jeepers, guess I will be careful when I take a bath, now I have this terrible image in my mind each time I step into the tub....

Better news at physical therapy, Bob has been able to consistently push up from the wheelchair to a standing position. I am so very proud of him. However, he can only do this at the parallel bars as he needs to grab onto the bar, once he's standing, to keep his balance. The PT tried to get him to stand up "out in the open" in the middle of the room, but Bob would not let go of the wheelchair armrest, so was sort of half-standing, half-leaning backward and pretty much scared shitless. But back at the parellel bar, he was able to walk 60 feet!!!  And no more leaning to the left!

The PT also fitted him with an AFO (ankle foot orthotic) last week. This was supposed to correct Bob's gait problems, but didn't seem to do a darn thing... I had high hopes that an AFO might do the trick. This was a big disappointment.

And now, Bob has developed a new gait problem, that of his right knee locking on extension. So that his leg is stuck straight, knee nearly backward, and his foot seems to be glued to the ground and poor Bob is unable to go forward or backward... Now there is talk of some type of knee brace.

In the midst of all of this, I have been filling out a 14 page "general information" questionnaire for the new attorney, which included, among other things, 15 years of past medical history, names, addresses, phone numbers of every single doctor, hospital, health care provider Bob has seen, and that alone literally took three afternoons to track down... not to mention all those little things you store in your memory, like dates of graduation, etc., that Bob can't tell me and I don't really know so have to track down.

And then add to this mix, Bob's peg tube is continually clogging every morning and then the dryer broke down. So there I am draping wet laundry all over the wheelchair ramp. But God bless the repairman who showed up the very next day and did not charge me for a new thermostat.

Believe me, I have been overwhelmed and stressed out and, half the time, don't know if I'm coming or going... That kind of stress where you walk into a room and completely forget why you walked in there in the first place. The other night, I set up Bob's feeding pump and a half hour later realized I forgot to turn it on. So I turned it on. Then another hour later, Bob needed help adjusting himself in bed, so as always, I first look to make sure that feeding tube is clear of him but--when I look down, I realize there is no pump tube connected to Bob. Because I forgot to connect to the dang thing. And pump is running, spilling all the Jevity on the floor. Ga! Thank goodness for Boomer, who will eat anything, and helped me clean it up. And then, after all of that, I finally get Bob connected to the pump, and a half hour later, he says "um, wet". I go to check him, and find out I left his peg tube clamped and the Jevity exploded backward out of the spare port all over his bed..... aargh! So there I am changing bedsheets wondering where the heck my mind has gone.

Speaking of Boomer, I won't even tell you about the time I looked at the clock and thought, oh, it's time to walk the dog! So I grab the leash, I am out the front door, all the way down the steps when I realize all I have in my hand is a leash-- no dog.



All righty... I am one harried caregiver.... But! Tomorrow is another day AND I have all the paperwork done, now.  I think...

Work In Process

Week 1

Bob has been busy drawing and I have been drowning in paperwork! The new attorney has me filling out pages and pages of documentation and now I'm on a paperchase to get some pre-stroke medical records.

Which is why this blog has been very quiet...

But I figured I need to post something here, so folks won't think I've died... So! Here it is.

Someone once asked me about Bob's drawing process, i.e. how does he do it? how long does it take?

So I have been scanning in his new drawing, yet untitled, to show his artistic process. These scans taken every Sunday...

Week 2

Week 3

What is strange to me, is that pre-stroke, Bob was a "big picture" guy. He always started with a basic outline/sketch of the whole drawing, then added little details.  Now he starts with the little details.

Week 4

And the thing just grows and grows. And yes, it takes him forever...


Of course, he is drawing with his left (non-dominant) hand, and that slows him down considerably.

Week 5
(click to enlarge)

Amazing, the changes in the way his brain works since the stroke.

And I do wonder what he is thinking while he is painstakingly drawing...


I mean, does he have a concept? a "big picture"? or is he just "doodling"? And of course, with his aphasia, he can't really tell me...

I have asked him for a title for this new drawing, but he just said, "It's weird."

So I asked him, "What is it?"

He said, "A face."

All righty... can't say I'm really seeing that. Yet.