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Saturday, September 22, 2012

A Real Shock at Rehab

On Wednesday afternoon, at about 2:00 p.m., if you heard a loud crash -- well, maybe not so much of a crash as a rather loud THUD! --  that was the sound of my heart dropping to the floor. Because that was the moment that Bob and I were at Rehab, finishing up with the occupational therapist when the physical therapist came up to us carrying Bob's file.

That was when the PT said, "I was going to do Bob's re-evaluation today, and to tell you the truth, I was prepared to discharge him. But I see he has one more appointment scheduled on Friday, and if I discharge him today, the insurance wont pay for Friday, so let's just do the paperwork on Friday."

Discharge him?

And that was when my heart hit the floor. And the PT keeps talking, but I really can't even hear the rest of the stuff he's saying, because truthfully, I can't believe it. I mean, Bob is progressing, every time he comes to Rehab the therapists tell him how great he's doing, how much better and improved he is, and how he even looks better, able to hold his head up a bit more...

I am just numb sitting there. But I do hear the PT say this all too familiar phrase: "No Functional Improvement."

And then I hear something about Medicare capping off the amount of sessions they will pay for at Outpatient Rehab beginning Oct. 1, and Bob being close to being cut-off anyway, which is news to me, so I find my voice and tell him that Bob has a Medicare Advantage Plan and those plans don't follow strict Medicare guidelines.

But he says, "Well, even if the insurance covered it, it really comes down to no functional improvement. An Outpatient Rehab Center is just not equipped for this kind of long-term maintenance that Bob needs."

I am still numb, and the PT keeps talking, as if he is strangely arguing with me, even though I haven't said a word except about the insurance, as if the PT had this debate all planned out and was just going on with his script.

The PT says something about the "sorry fact" that the Health Care Reform Bill back in 1997 changed everything, that it used to be different, used to be that a "person like Bob" could continue therapy as long as it took for him to get better. But it's not that way anymore. Insurance companies just don't want to pay for it.

The OT pipes up. "A lot of people hire personal trainers to come into the home, you should think about that. They charge around $40-50 an hour, much cheaper than a therapist."

I am thinking: $40-50 an hour? who can afford that?

The OT says: "Most people in your situation would just find a good nursing home for Bob. I know you don't want to do that, but unfortunately, that's what most people do. You can't keep this up, forever, Diane. You really should think about a nursing home."

Nursing home?

The PT says: "What you can do is this. Go home and in four or five months, when Bob gets worse, ask the doctor for a new script and we can then get him here for another 4 weeks of therapy. The insurance should pay for that."

When Bob gets worse? I tell you, I cannot believe my ears. I'm supposed to wait for him to get worse? What kind of horrible system is this?

By now, my heart has not only hit the floor, but it has sunk somewhere past the basement, down in the subterranean levels of the earth.

Somehow we get through the rest of that PT session even with Bob all dopey and sleepy from Lyrica withdrawal. We get home. I call United Health Care, which carries Bob's Medicare Advantage Plan and ask them if they are changing the Outpatient Rehab coverage on October 1. Thankfully, they are not. Then I realize, in my shock after all the talk of discharge, I forgot to tell the PT about the torticollis and the Lyrica.

So, I figured I am armed with two things for Friday. But even then, really, it looks pretty darn hopeless. That phrase, no functional improvement, keeps ringing in my ears.

On Friday we go back to Rehab. I already warned Bob that it might be his last session, but to do his best. He says, "Oh well!" At least, he's not sleepy and in a good mood. Unfortunately, the minute we get there he has to pee, and can't...

We have OT first, then PT. In between sessions, he tries to pee again. And can't.

Finally, we are at PT with the same therapist as Wednesday. He is busy filling out forms, i.e. Bob's discharge paperwork. I tell him immediately about the insurance and also about the Lyrica and torticollis. He writes it all down, then begins asking questions, measuring Bob's head drop. The measurements were actually better. Bob can now hold his head in "neutral" position, before it -35 degrees. He still can't extend it back. But the left tipping has only improved by 5%. Still, I'm thinking, isn't this progress? Is it enough progress?

He gets Bob in the standing machine and Bob is able to tolerate 10 full minutes. Before it was 8 minutes. Then, he wants to get Bob at the parallel bars, but Bob says "pee!" I look at the clock, and the PT session is nearly over, there isn't enough time left to go to the bathroom and come back and walk, so I tell Bob this might be his last time to walk them, and he agrees to do it. But it worries me, because Bob gets so agitated when he has to pee, that I'm sure it will affect his performance.

So I sit down to watch. And the PT tells Bob that he wants him to try something different. He wants Bob to try to push up from the armrest of the wheelchair, instead of pulling himself up on the bar. I'm thinking, no way is Bob going to be able to do that. He hasn't been able to do that. We have tried that time and time again without luck. This is going to really just cinch the discharge... The PT positions Bob's hand on the armrest and tells him to give it a try. Bob looks worried. The PT tells him again, just give it a try and if you can't, well, then you can use the bar. And then---

By God, Bob does it! He actually does it! I can hardly believe my eyes. From sit to stand without pulling himself up on the bar! Just pushing himself up from the wheelchair.

Me--I jump to my feet.

Not only did he do it, but now he is standing perfectly straight! He's not leaning a bit! OK, his head is still tilted to the left, but the rest of him is straight! And he isn't leaning on the parallel bar at all!

Me--I am holding my breath.

The PT says, "Good!" and asks Bob if he can now walk to the end of the bars. And he does it! All the way to end without leaning one bit. With just his hand on the bar and only one therapist, guiding him, in front of him.

Me--I run to the parallel bars, clapping my hands, gushing, "Oh my god! That's incredible!"

The PT says, "That was awesome."

Bob says, "See?"

The PT asks Bob if he wants to try it again.

Bob says, "um, pee."

So off we go to the bathroom, where Bob actually finally pees. When we come out of the bathroom, the therapist is waiting for us.

And the PT says, "Now, that's what I call progress! You want to sign on for four more weeks?"

Well, you bet we do.

As we left Rehab, I told Bob, "I am so proud of you."

Bob said, "I am proud of you, too."

Friday, September 21, 2012

Lyrica Withdrawal

I weaned Bob off the Lyrica and Sunday was his first "Lyrica-free" day. He seemed to be handling it just fine.

Then on Monday morning, he didn't seem well, and when I asked him what was wrong, he told me he was "so sad". This is highly unusual for my usually upbeat, bright-eyed and bushy-tailed guy. He was also very tired.

Monday was also Bob's monthly pain management appointment. When the physician's assistant came in the room, she immediately asked if Bob was completely off the Lyrica. I told her it had been two days.  I also mentioned that Bob seemed depressed.

She said that Lyrica is in the same category as some of the anti-depressant drugs, and though not an anti-depressant, it could have been giving Bob a "little lift" and he might feel different now that he's off it.

We also talked about if Lyrica could be causing "torticollis" and, though, she had no experience with that particular side effect, she agreed with me that it was certainly worth a try to get him off of it and see if that helps his ability to hold his head up. She told me that Lyrica stays in the system "about 4 weeks" so not to expect any improvements until then. She also assured me that if Bob's pain increased, she would prescribe something else, maybe Neurontin. Then she said, "but I better look that up, make sure it doesn't have the same side effect!"

I told her that I already looked it up on the internet (Bob had been on that before Lyrica), and didn't see torticollis listed. But, of course, if she had a better drug reference than I did, she should look it up.

She sort of laughed and told me that "all the doctors" use the internet these days to look up drugs. "You've got the same reference we do!"

So, fiddley-dee on that neuro doc!

We ended the appointment with the PA telling me that I had done "the absolute right thing" by taking Bob off Lyrica and calling for weaning-off instructions. Made me better about the whole thing.

On the way home, the wheelchair transport driver kept asking me if Bob was "OK". He was not his usual chipper self and ultimately fell asleep in the back of the van...

On Tuesday, Bob was still quite depressed and sleepy. He would not even pick up a pencil to draw. Ditto on Wednesday and Thursday, and when we went to Rehab, he kept dozing off during OT.  All of this has me quite worried, and, of course, I am googling "Lyrica withdrawal symptoms" and finding that depression/anxiety is common, but really nothing about "sleepiness"....

Then this morning, Bob woke me up singing, in a Southern accent, "Fried Chicken!"

Yes, you read that right, "fried chicken". Don't ask me why. Another silly aphasia thing...

But I sang back to him, "Did you say, Fried Chicken?" and he sang out "Yes! Fried Chicken! And corn! Corn!"

So I sang, "Just like my mama used to make!"

Then he told me he wanted "to be a movie star".  So I said I would call around to the casting agencies and see if they had an opening for a guy in a wheelchair who couldn't remember his lines. And he laughed.

This morning, he is drawing again. Thank god.

Today, we go to Rehab for his PT re-evaluation. Which has me very very worried as I don't think he's going to "pass" after what was said at the last appointment.  More on that, later...

All in all, a stressful week, here at The Pink House.

Wednesday, September 19, 2012

A Surreal Anniversary

Bob at The Dali
(behind him is an artistic rendition of Salvador Dali's famous mustache)
Sunday was our 18th wedding anniversary, and I almost decided to skip it... I mean, what does one do to celebrate? Pre-stroke, Bob would wake me up in the morning with a kiss and "Happy Anniversary, Sweets!" and a cup of coffee and flowers or some other trinket. He never forgot our anniversary.

We used to go out for dinner and dancing, or spend a day at the beach, or take a little road trip, do some antiquing in the neighboring villages and towns. All that is out of the question now, since Bob can't eat (has a peg tube) and his mobility issues prevent the others.

I did ponder other options: a movie? a stroll in the park? Going to movie brought visions of Bob having to pee half-way through, and movie theaters do not have a pause button. A stroll in the park brings up worries about weather conditions--always a concern with a wheelchair.

I almost skipped it, because, sadly, unless I tell him, Bob wouldn't even know it's our wedding anniversary.

But then, I had a grim thought. What if this would be our last anniversary together? What if we had no "19th"? These days, I do not take things for granted. So I decided we must do something to celebrate.  I began to research local museums, looking for something nearby and wheelchair accessible and not too pricey. Well, turns out they are all pricey, but I rationalized--what the heck? I just saved $48.00 talking to the neuro doc on the phone instead of going in for an appointment. Besides we deserve it, right? And finally, I made arrangements with the wheelchair transport to take us to "The Dali", a museum housing a large collection Salvador Dali's artwork.

Bob's favorite painting. He spent a long time gazing at this,
it's called "Birth of a New Man"

I figured Bob, an rather surreal artist himself, would enjoy The Dali. And the museum bills itself as handicap accessible. Plus they have a cafe. So my thought was to take a tour of the exhibit, perhaps a cup of thickened coffee in the cafe afterward for Bob. Sounded like a leisurely way to spend a few quiet hours on a Sunday afternoon....

So we went to "The Dali" and on the way, in the back of the wheelchair transport, I could hear Bob, he was so excited. He kept saying "Fun! Fun!" and, well, "Happy Birthday"....

When we arrived, I was surprised to see the place was jam packed.

Alas, it turned out that the day of our wedding anniversary was also the day of two huge private bus tours, so, instead of a leisurely quiet afternoon---there we were, surrounded by hundreds of people, including an amazing number of security guards wearing black suits and ear pieces, looking more like secret service than security guards---and me, trying to a push an oversized wheelchair through this crowd...

Of course, immediately after arriving, the first "exhibit" Bob had to check out was the bathroom.

I took him to the unisex/family bathroom. Though marked "handicap", the bathroom was rather small. Between the baby changing table on one side and the toilet and sink on the other, there was barely enough room to wedge Bob's man-size wheelchair.

We carry a plastic "bedside" urinal with us, and to get the urinal, I have to get to the backpack that is attached to the back of Bob's wheelchair. This required some fancy footwork in these tight quarters. A bit of squeezing by plumbing fixtures. Once I extracted the urinal, I had to get back to the front of the wheelchair, flip that special right armrest out of the way and help Bob pull his pants down. As always, this maneuvering has to be done at high speed, as Bob is very agitated when he thinks he has to pee. Then, once he is "set up" comes the waiting, sometimes for 20 minutes or more, as he tries and can't.  This time, of course, he can't... Then, reverse all the above, putting the urinal back, pulling the pants up, putting the armrest back up, squeezing by plumbing fixtures.

By now, it's time for the tour to begin. So, we rush to the elevators, only to be stopped by the secret service/security guard, who notices that I have a (gasp!) water bottle with me. I'm told I cannot take the water bottle with me, because liquids are not allowed in the gallery. He tells me I should take it out to my car. My car? What car? ha! Or else he has to confiscate it. But I don't want to give it up, because this water bottle has a long strap on it that goes over my shoulder, important when pushing a wheelchair, and it took me forever to find a water bottle like this one.  I take it with us, everywhere.  So I tell the guard this, and the guard, very nicely, tells me just to stash it in Bob's backpack and NOT to take it out in the exhibit, or it will be confiscated.  Jeepers, I have everything in that backpack except the kitchen sink. I mean there is a complete change of clothes for Bob, plus two pairs of Depends, towels, latex gloves, bath wipes, thick-up for thickening his drinks, and, of course, a large plastic urinal, and now I'm trying to stuff the water bottle on top of everything. I manage to get it in. Barely, with the zipper only half closed...
My favorite.
The Persistence of Memory
This is much smaller in real life, than you'd expect.

Finally, we get upstairs and find the tour guide, who is waiting to start the tour. I tell him it's our wedding anniversary and he tells me that we are going to get "front row seats" and before the tour begins, he actually tells everyone that we have "front row seats" and asks them to make room for us in front. This was really kind of him, and very much appreciated by me, because the only other time I took Bob to an art exhibit, people kept standing in front of him and he could not see a thing.

The tour went well and was interesting, but lasted over an hour and, though Bob was holding out pretty good, I was starting to "feel it" in the back of my legs--all that wheelchair pushing.  Finally, we get to the last stop on the tour. A painting called The Hallucinogenic Matador. It's there that I can see Bob starting to fidget.

He's moving his hand toward his crotch, a gesture he makes when he thinks he has to pee. And I'm thinking, oh shit. Because I really want to see and hear about this last piece on the tour. I am standing behind Bob, so I put my hand on his neck, kind of massaging it, to calm him down, when suddenly he blurts out, quite loudly, "PEE!"

Oh lordy. Everyone looks at us and I whisper to Bob that "the tour's almost over" and "we'll go to the bathroom as soon as it's over". But he keeps saying "pee! pee!" and is getting very agitated. So, I look behind me but the gallery is packed with people and there is no way I can turn the wheelchair around and head out of there. Finally, after what seems like the longest talk about a painting in the entire history of man, the tour guide says, "And that concludes our tour. Any questions?"

Bob at The Dali by the melted park bench...
And me, I pipe up, "Where's the nearest bathroom?"

And then it's a race, because Bob is freaking out now, and I am trying to quickly dash, pushing the wheelchair, through the maddeningly slow-moving crowd, and finally we get out of the gallery and into the lobby and find the bathrooms.

Again, there is a unisex/family room, but again it is way too cramped in there. In fact, it seems a little smaller than the one downstairs, because now instead of squeezing through the space between the wheelchair and plumbing fixtures, I am more like squishing through the space. I mean, it's really tight. I get to the back of the wheelchair and squish past the toilet, which immediately flushes, as it's one of those new-fangled automatic toilets which sense movement. And I reach into the backpack, and the toilet flushes again. And I take out the urinal, and it flushes again! And every movement I make, the toilet goes BOOSH! and I finally get away from the thing, and as I squeeze past the sink to get to the front of the wheelchair, the automatic faucet gushes out water. GA!

Then, of course, I flip back the armrest and the toilet goes BOOSH! And down go the pants. The faucet goes GUSH!  It's beginning to sound like Niagara Falls in there.

And, of course, after all that, after waiting for 15 minutes or so, Bob still can't pee. So, there I am, repeat the above process in reverse, all the time to the tune of BOOSH! and GUSH! And I wonder, what is anyone going to think, standing outside this bathroom, hearing all of that. And, of course, when I open the door, lo and behold, there is one of those secret service/security dudes, arms crossed, staring at me.

So, I smile sweetly at him and say "Hello!" and say to Bob, "Let's go look at the rest of the exhibit, honey!" And off we go, to look at the rest of the exhibit (the part that wasn't part of the tour).

Of course, now we are running out of time. And I am getting very tired, all this wheelchair pushing and standing around and squeezing past plumbing fixtures. But we have a half hour or so. We manage to catch a few of the rooms, but it's difficult with all the people who are there, and now, without the protection of our tour guide, people continually stand in front of Bob, who can't see a thing. We get to the last part of the exhibit, pen and ink sketches by Dali, which are very interesting, but we look at only a few because Bob decides he has to pee again. aargh!

So back into the automated un-handicap accessible bathroom. Back to the BOOSH! and GUSH! of the plumbing fixtures. Finally, Bob pees. Yes! I dump the contents of the urinal into the toilet and---

Nothing happens. It doesn't flush.

I'm thinking, oh god, we broke the thing.

So I stand there by the toilet, doing sort of a strange dance in front of it, trying to get it to flush.

And finally, it works. It flushes.

18 Years of Wedded Bliss...
By then, it's nearly time for the transport to pick us up. But I want to take a few pictures before we go, so we go outside where there is a rock garden and some sculptures among other things. One of the "sculptures" is this really cool melted park bench, and to get to it, I have to push the wheelchair down a pathway made of crushed shells... Big Mistake. Because, though I get him out there, I can't seem to get him back up, as the wheelchair wheels have sunk into the crushed shells.  I'm thinking I'm going to have get one of those secret service/security guards to help me, and where are they when you need them? but finally, after a few hefty tries, I manage to tip the wheelchair on its back wheels, and hoist it back on level ground --where a nice tourist offers to take our picture.

If I look a bit disheveled, sweaty and tired, well, you know why...

But we had a nice day. It was worth it.

Though I miss those other anniversaries, you know the ones, coffee in bed, flowers, a trip to the beach, dinner and dancing, a road trip antiquing...

Saturday, September 15, 2012

Could it be--- A Lyrica Side Effect?

If you've been following this blog, you know all about Bob's neck and head-drop problems which began sometime around May of this year, and how flummoxed I've been. When he first developed this problem, I took him immediately to his neurologist, who told me that the cause of the head drop was neuropathy. And pretty much, there was nothing we could do about it.

Then, the at-home physical therapist told me that the head drop/neck problem was caused by positioning, the culprit being the fact that I was told to keep Bob's hospital bed elevated at 45 degree angle at night for his feeding pump. You all know, how guilty that made me feel.

Then comes the occupational therapist, who told me that she thought the neck/head problem was caused by a "brachial plexus injury"..... since then, we've been doing neck stretching exercises pretty much every single day, seeing only a little improvement.

All righty.

So this past week, Bob had an appointment with Dr. P. Now, Dr. P. is an endocrinologist and Bob sees him every 4 months or so. He runs blood tests and keeps track of Bob's hormone levels, liver/kidney functions, etc. We haven't seen Dr. P. since May.

Dr. P. takes one look at Bob and says, "What's going here? I don't like the way he's holding his head."

So, I tell him all about it and what we've been doing for it.

Dr. P. says, "That doesn't look like neuropathy to me!" He also didn't think it was a "brachial plexus injury".  He reaches over and feels Bob's neck muscles. He says, "That's really tight. Like a spasm." He asks Bob if it feels "like a spasm" and Bob says, "yes." Then he tells me to go home, call the pharmacy and ask them for a list of every possible side effect for every drug that Bob is taking, and when I get the list to look for the word "torticollis". I had the doctor write it down for me.

I had thought about drug side effects before, I think someone had even mentioned it here when I first posted about Bob's neck problem. But I was not looking for the side effect "torticollis" when I originally looked into it.

Zenith supervises Bob's Scrabble game...
See how he tips his head? It does look like "torticollis".
Torticollis is (I had to look up the definition) a condition described as such: "the patient's head is tilted toward one shoulder, while the chin points in the other direction. One shoulder is higher than the other." Hmmm.  I actually had to go look at Bob then, and damn, if that's not what he's doing.

The pharmacy told me it would take a few days to get the list, so I went on and began searching there.

And, lo and behold, there "torticollis" was listed as a side effect of Lyrica, a drug that Bob began taking this past year and has been increased from 100 mg to 150 mg and finally in June to 200 mg three times a day. Lyrica was supposed to help his arm pain as well as any "nerve pain"....

So I call Dr. P. and get patched through from his answering service and Dr. P. tells me to take Bob off the Lyrica immediately.

I asked Dr. P. if it was safe just to stop taking the drug, or should I wean Bob from it? He tells me to just stop it, that it shouldn't be a problem.

Well, I hang up the phone but am a bit concerned about stopping 200 mg x 3 a day, cold turkey, just like that. When I read, it said Lyrica should be "weaned" off--as stopping suddenly could cause seizures...

So I decide to call Bob's neuro doc (who prescribed the 200 mg Lyrica), just to ask if it's safe to stop Lyrica completely, cold turkey. I talk to the nurse and leave a message. The nurse wants to know why I want to stop the Lyrica, so I tell her that Dr. P. wants me to stop it and why. She calls me back with a message from the neuro doc which reads: "DO NOT STOP LYRICA. Come in for a follow-up appointment." I ask why we need a follow-up and the nurse says he probably wants to talk to you.

So, I hang up the phone thinking now I have two doctors telling me two opposite things--what do I do?

And damn, I don't want to go in for a follow-up because that will cost $48.00 and for what? Just to talk?

So, I decide to call Bob's pain management doctor and ask him how to wean off Lyrica. Because, really, if this drug is causing this problem, well, I want Bob off of it. But safely. And Pain Management originally prescribed the 100 mg Lyrica.

I get a hold of a nurse at Pain Management and she gets back to me with the doctor's instructions, which is 2 a day for 2 days, then 1 a day for 2 days, then stop.

By now, I feel rather like (insert creepy music here) "The Evil Caregiver From Hell". But I decide to call the neuro doc back and leave a message for him, which is basically I'm weaning Bob off the Lyrica per Pain Mgt. instructions and if he wants to discuss it, he can call me! Because, I tell the nurse, I can't afford $48.00 just to talk to him this month. ha!

And the neuro doc actually does call me back. How about that? I saved 48 bucks right there. Anyway, the neuro doc says "Lyrica does NOT cause torticollis." Just like that. And in a very condescending tone of voice, I might add. As if I'm an idiot, as well as Dr. P. So I say, well it's listed as a side effect. He asks where I found that information. I tell him And he says, in the same tone of voice, "Well, probably someone somewhere in some study developed torticollis after taking Lyrica, but they probably would have developed it anyway. Probably already had torticollis before they took Lyrica."

Oh boy.

The neuro doc then admonishes me that I am going to "cause Bob GREAT pain" by taking him off Lyrica and to be prepared for that....

What's an evil caregiver to do?

Well, this evil caregiver is weaning him off the Lyrica. Because, you know, I have to try it.  Dr. P. said that I should know, in a few days being off it, if Bob's neck is loosening up a bit. So we'll see what happens. Hope I'm doing the right thing here.

In other news at The Pink House, I finally got the darn medical records and got them off to a new attorney. Fingers crossed.

Tomorrow is our 18th wedding anniversary. I am planning to take Bob for an outing to a museum. Let's hope we don't spend the whole time in the bathroom!

Sunday, September 9, 2012

Legal Matters

I have had a helluva few weeks here, since the attorney, who I thought was taking the medical malpractice case, who repeatedly told me "not to worry" for this past year and half, has bowed out. The reason, he says, is because Bob had "pre-existing medical conditions".

I tell you, I do not understand this at all. As what do "pre-existing medical conditions" have to do with the simple fact that no one in ICU noticed Bob was having a stroke?

I still have nightmarish visions of that night/early morning. Visions of Bob lying in that hospital bed, helpless, as a dark curtain is being slowly pulled over his brain, minute by precious minute, hour by hour, causing more and more brain cells to die... and the critical care nurses are doing--what? Having a cup of coffee?

Every time I see one of those posters, you know the ones, that say "Time Is Brain" and tell you to get to a hospital the minute a stroke is suspected, I cringe...

Bob had been in ICU for post-surgery recovery. He had, earlier that day, an endarterectomy which is the surgical removal of a clot in his carotid artery. The doctors had told him, really freaked him out, that if he didn't have this surgery, he would have a massive stroke. So he had the surgery. The surgery "went well" according the surgeon. I sat with him in ICU, after the surgery, while he ate his supper, complaining the whole time because all they gave him was soup and jello and he was hungry. He called me early that night, to remind me to bring his razor in the morning, to tell me "good night" and "I love you", and jeepers, that was the last real conversation I had with him....

And when I come into ICU in the morning, at 9:00 a.m., (I could kick myself for this, wasting another few precious minutes) the first thing I notice is someone has taken the chair out of Bob's room. So I go off to look for a chair, only glancing at Bob, thinking him asleep. Finally, getting a chair and while putting my things down, the nurse comes in with Bob's breakfast tray. She puts it on his table and helps Bob sit up, but he is having trouble sitting up, keeps slipping down, so she gets him sort of sitting up and she leaves the room. So, I go to him and realize that something is terribly wrong. Not only can Bob not sit up, his face is drooping, and he is trying to speak, but can't, just making noises, and undissolved pills fall out of his mouth, and oh my god--I run after that nurse who asks me, "Isn't your husband always like that?"

Who tells me, "I didn't think he seemed right this morning."

Who clocked in, that morning, at 7:00 a.m.

Who, when I give her the pills that fell out of Bob's mouth, tosses them in the trash can and tells me, "Don't worry about those."

Who, believe me, I would've strangled right then and there, if I wasn't freaking out so badly.

And later, after they "rushed" Bob back into surgery, to have his carotid artery re-opened and re-cleaned out. Later, after the CAT scans were done, a neurologist would tell me that he was "very sorry" but "too much time had passed without oxygen" to Bob's brain and that my husband would not recover...

And what, I ask you, does "pre-existing medical conditions" have to do with that scenario?

So I am scrambling to find a new lawyer at this late date. The statute of limitations runs out next month.  Time's a-wasting. And it may already be too late. Even with a 90 day extension.

And our now ex-attorney does not have the medical records, for some reason.

So I take Bob down to the hospital to sign for a whole new set of records. We did that on August 25th and we still don't have the records. Because for some darn reason, they are being processed out of state. And everyday I have been calling this "copy center" who is "processing" the paperwork, and everyday I am told they are still "being processed"....

I tell you, I'm about having a nervous breakdown here.

And it's not about the money. Well, it is about the money, but it's not about getting rich off our tragedy. It's about having enough money to be able to provide Bob with the care he needs for the rest of his life. Because living on a fixed income is not easy, especially with all these doctors co-pays and prescriptions and therapy and Medicare being as crummy as it is--not to mention all the equipment, specialized therapies, etc., out there to help a person in Bob's condition, which we cannot afford.

Call me crazy, but I do think they should pay for this...

So tomorrow, I will be back on the phone screaming at the copy center, and if, when, I get the records, putting them in order and praying and praying I can get an attorney who will take the case...

Trying not to completely flip out.

Trying to do this between two therapy appointments and two doctors appointments scheduled this week.

If this blog is quiet this coming week, you'll know why.

Thursday, September 6, 2012

CAUTION: Student Driver

One of the "goals" I asked for at Rehab was to please, please teach Bob to propel his wheelchair. I did this for two reasons. The first, I figured it would be a fairly easy goal for Bob to show "progress" in and second, I do get tired of pushing him around....

So they started teaching him to propel his wheelchair this week.

At first, he could only go backwards...

Then, around in circles, sort of...

But finally, he's getting the hang of it!

Yesterday, when we went to Rehab, I had Bob drive himself through the hospital.

He did pretty good.

Only nearly ran over one pedestrian.

Only ran into one potted plant...

...and one garbage can.

Only bumped into a few walls.

Only went about .0000000001 miles per hour. I mean, elderly ladies with walkers were passing him.

Only took a couple of wrong turns.

Only passed by the exit door and kept on traveling...

Only nearly knocked everything off the countertop at the Rehab check in.

Oh, I do wish he would look up when he's driving instead of looking down at his feet.

I told him that I was going to put a sign on the back of his wheelchair: CAUTION: STUDENT DRIVER

Monday, September 3, 2012

Haunting Aphasia

Bob is speaking better these days, and has come a long way since his early diagnosis of "severe expressive and receptive aphasia with apraxia and dysphagia". But he still has a long way to go. Some days, though he is speaking more clearly, much of what he says seems just nonsense to me. One sort of gets used to this. Sort of.

The other night, he was talking a blue streak, I mean, really going on and on, sounding quite urgent and, I thought, he's trying to tell me something, something important. And some of what he was saying was quite strange, weirdly haunting... and I do wonder what goes on in that poor damaged brain...  So like an old school secretary, I got out my notepad and took dictation, thinking if I wrote it all down maybe, just maybe, I could make some sense of it later. Here it is:

Bob: Five days. A unit. Legs. (touches his paralyzed arm)

Me: That's your arm.

Bob: A unit and... A unit and arm and you and arm and you... (points to me)

Me: And me?

Bob: Legs. (touches his arm again)

Me: That's an arm.

Bob: Yeah. Arm. A sideboard.

Me: Sideboard?

Bob: Yeah. A unit. My arm and a room. A room.

Me: What room?

Bob: A room. Maryann. And a room and a room and a room...

Me: I don't understand. What about Aunt Mary? What room?

Bob: A room. A room and a room and all the people.

Me: What people?

Bob: A room full of people. A room of people. And Maryann and Maryann. Five days.

Me: Five days?

Bob: Five days and a room and... uh.. all the people. All the people. People. All the people are way back, OK?

Me: What people are way back? I don't understand.

Bob: (makes a gesture toward my office) See? All the way back. People. Sideboards. And a room and a room and all the people. All the people. People. All the way back and all the way back and all the way back, people and... (he points to me)

Me: Me?

Bob: Yeah. Hey.

Me: What about me?

Bob: And and and people and (touches my shoulder) you. OK? Sideboard.

Me: Sideboard?

Bob: (softly, sadly) Sideboard.

Me: What does that mean? Sideboard?

Bob: (softly again) Sideboard.

Me: I don't understand.

Bob: OK.

Me: What are you trying to say?

Bob does not reply.

Me: Tell me again... Bob?

No reply.

Me: I don't understand. What sideboard?

Bob: (puts his hand on my head) Diane?

Me: Yes?

Bob: And people and Diane. Diane. A room, OK? A room and Diane. And people and you. And a room and people all over.

Me: Where is this room? Who are these people? Are you talking about my office?

Bob: Yeah, a room and people all over. I care. And I love... over and all the people and units and all the people, right side, right side, right side and right side all the people and a door and... (voice trails off)

Me: And?

Bob: Well.... Legs. (touches his paralyzed arm)

Me: That's an arm.

Bob: Yeah. People. An arm and people are... people are sideways. Sideways. Sideways. Sideways.

Me: Sideways? Huh?

No reply.

Me: Bob? You OK?

Bob: I'm thinking.

Me: OK.

Bob: I am a people of business. Of business.

Me: Say again?

Bob: OK. Diane. And a room and a... a... a... and...  And Lisa.

Me: Lisa? (note: Lisa is Bob's sister, she is deceased)

Bob: Yeah.... Diane?

Me: Yeah?

Bob: Diane?

Me: Yes?

Bob: And a unit and Oh! Um, a board and a room and... A room and hey, hey! A room all the way back, OK?

Me: I don't understand.

Bob: And Lisa. Diane? Hey! See you around! Bye bye!

Me: Huh? Where you going?

Bob: Going.

Me: Bob?

Bob: A room. A door. A room. Lisa. Another day. Another day. See you, bye bye!

Me: OK. Bye bye.

Bob: Well, bye bye! (taps my hand) Bye! A tear. A room. But away. Way back. OK?