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Thursday, July 26, 2012

Almost Like a Person

Yesterday morning, Bob told me, "I feel almost like a person."

Of course, he didn't come out and say this in one fell swoop.  The conversation went something like this:

Bob:  I feel... almos lie... gurple.

Me:  Huh?

Bob:  I feel... almos like... gerpons.

Me:  OK. You said, I feel almost like-- something. I can't understand the last word. Say it again.

Bob:  I feel... almost like... gerbles.

Me:  You feel almost like gerbils?

Bob:  No!

Me:  OK, say it again. Slower.

Bob:  I... feel... almost... like.... a.... purspin.

Me:  Purspin? Purse pin? --um-- person? You feel almost like a person?

Bob:  Yes. I feel almost like...a person.

Me:  Well, that's silly. Of course, you're a person. You're certainly not a cat.

Later, I thought about this little conversation. And you know, it rather broke my heart. Because how did he feel before? Like a non-person?

And why does he only feel almost like a person?

This morning, I am still thinking about that conversation. Though now I'm thinking it's a good sign. That Bob is coming back to me. That his brain is healing and he is feeling "more normal"...

Just my thoughts.

Wednesday, July 25, 2012

He's In! (I think...)

The good news here is that Bob was approved for financial assistance for Outpatient Rehab. That means the hospital (God love them!) is picking up the $80.00 co-pay per visit and so it will cost us nothing!!!!

The bad news is the CODES that the doctor's office submitted for the insurance are still screwed up.... I talked with a woman in the office at Rehab and she said the doctor put down a code for CVA and Rehab doesn't "treat CVA" but treats "the symptoms" and she needed the codes for the exact symptoms to be treated, i.e. "gait" or "balance" etc. So I called the doctor's office and talked to a nurse who looked up Bob's chart but she said the doctor failed to put anything in the chart except for "CVA with right hemiplegia" but she said she would fax the paperwork again with a code for "right hemiplegia". Which she did. Which still, according to Rehab, is the wrong code....

So back and forth we went. With the nurse telling me that Rehab needs to do an evaluation first to decide the proper treatment needed and then, and only then, will she know the exact code to fax. And Rehab telling me that the doctor's office has to fax the right code before they can do an evaluation!

Last week, a woman in the Rehab office had told me that PT was approved, but not OT. This week, I'm told neither were approved yet.

All I can say is AAAAAARGH!

But back to the good news, the woman at Rehab scheduling decided to just "go ahead and get him scheduled and worry about the codes later". So Bob's first appointment is next Tuesday.

So we're off! I think.

Let's hope this all works out.

Sunday, July 22, 2012

Five Minutes of Bliss then...

Bob's First Starbucks, Post-Stroke!
So this past week, I took Bob over to the charity hospital to file his financial assistance forms for Outpatient Rehab. Now I suppose I could have gone over there alone with the paperwork, but I'm not one to forego a sympathy ploy if I think it might speed up the approval process a bit. I mean, take a look him, he needs this!

The hospital has a little cafe in the lobby which serves sandwiches and Starbucks coffee. And I was thinking, before we left, that it might real nice to stop there on our way out and have a cup of coffee. Bob has not been out to a restaurant or cafe since prior to this stroke mainly because of his swallowing problems, i.e. can't eat so why go out? but also because it is so hard to take him anywhere with his mobility and bladder issues. But I figured, since we were going to be there anyway and it wouldn't take long to drop off and sign the paperwork, I'd give it go. See how he handled it. And I thought, since the hospital is only 3 blocks from our house, if all went well with this trial, perhaps we could go back again someday.

So I packed the Thick-It in our travel case. Thick-It is a powdered liquid thickener for people with swallowing difficulties. The one thing about Thick-It is it's tricky to work with. You have to super careful as it tends to get stickier and stickier the more you mix it and will turn almost gel-like if you let the liquid stand too long. In fact, it just keeps sort of hardening over time and can actually clog the sink if you dump the thickened liquid down the drain. Anyway...

Bob's been approved to drink "nectar-thick" liquids, and I planned to thicken his coffee so he could drink a cup. I don't use the Thick-It much at home, because usually, drinking anything causes him to start coughing and then, later, he makes strange gurgly noises which pretty much scare the crap out me... But we hadn't tried it in a awhile, so I asked Bob if he'd like to give it a try and he said yes.


So we dropped off the paperwork and stopped at the cafe and I ordered two small cappuccinos. Unfortunately, all the tables in the cafe were taken so I asked the cashier if there was another place we could sit and she said she'd be happy to take our cappuccinos over to the lobby area. And she did.

Now the lobby was nice, cushy seats and one of those new fangled player pianos playing classical music. Even though we were technically in a hospital lobby, it did not feel like it. I tell you, even these charity hospitals are making a ton of money these days...  I thickened Bob's cappuccino and he was actually getting it down without any problem, though I had to admonish him to "sip slow" and "swallow hard" as he seemed to be gulping it down. Bob was really enjoying himself. Several times, he said "yum!" and you know, it was so nice... just sitting there, listening to classical music, sharing a cup of cappuccino and relaxing. And I can't remember the last time I felt like that. Completely relaxed. It didn't even bother me when he spilled a little on his shirt...

I must've looked away for a split second because the next thing I know, Bob had lost his grip on the cup and dumped the whole thing--

down the front of his shirt.

The upended cup landed smack dab in the middle of his lap,

soaking his shorts,

soaking the wheelchair cushions

with sticky thickened cappucinno.

I am running back to the cafe for more napkins. Of course, these are the cheap paper napkins which just keep shredding, so instead of getting much of it up, I just make a bigger mess: i.e. sticky thick cappucinno but now with napkin flakes stuck in it.

Of course, everyone is staring at us.

We leave, in a hurry, back to the house. Where I get Bob onto the bed so I can strip off his clothes. I get his shorts off which are squishy with thickened cappucinno, which squirts all over the bedsheets. The wheelchair has a Jay cushion which is the kind of cushion with air pockets in the fabric, so the air pockets are filled thickened cappucinno and paper napkin flakes. I have to strip the sheets and clean the floor and take the wheelchair apart and the cushions apart and---aargh!

But I keep telling myself, wow, we had like five full minutes of complete bliss.

Maybe, we'll try it again sometime.

Tuesday, July 17, 2012

A $3.98 Damage-Free Hanging Decorative Arc Hook

You all know the story of the proverbial straw that broke the proverbial camel's back. Well, this past week, my straw happened to be a $3.98 Damage-Free Hanging Decorative Arc Hook.

Before I commence this story, let me give a little background. You see that last post? The one right under here? Which is titled "One Hoop Jumped, One More to Go"? well that thing should have been titled "One Hoop Jumped and Another Zillion to Go!!!"

So the doctor does send a script for PT and OT, but I hear nothing. Usually (in my experience) these things go pretty quick. By day three, I call the rehab center who tells me that yes, indeed, they got a script but it had the WRONG CODE on it and they have been trying to call the doctor's office to get the right code and have left several messages and no one is returning their phone calls.

So here I am again, jumping hoops. Trying to get ahold of someone (anyone there?) at the doctor's office who knows what the "right code" might be. Finally, on Friday, rehab gets the "right code" but only for PT, not OT.

Good thing is that they sent the PT script through the insurance and it was approved. Yes! But still no OT. Doctor is just not responding... But the woman at the rehab center says "let's set up a PT appt." and I say "OK" and then she says it will cost $40.00/hour, and I say, Bob is approved for Medical/Financial Assistance and she says, well I don't know anything about that, so you better call them, otherwise it will cost $40 for PT and, if the doctor does send the right code, it's another $40 for OT, so $80/day at 3 days per week.......

and yikes, we can't afford that...

So I call Medical/Financial Assistance (who last year, said they would pay Bob's co-pays for rehab, god bless their souls) but the woman I spoke with last year is on vacation and will be gone for the rest of the month. And no one else in the office knows a darn thing about it... So, I am transferred to one woman, who transfers me to another woman, who transfers me to yet another supervisor whose voice mail tells me she is also on vacation and gives me a number for someone else! Finally, I end up with someone who tells me that we have to file a whole new application, because applications are only good for a year....

So OK. Here I am filling out all this paperwork. Again.

Meanwhile, Bob's right (paralyzed) arm is still killing him (nothing seems to help, not the botox, not the splint, not the Lyrica) and he wont even let me touch that arm without him screaming in pain. Plus now his toes on his left (unaffected) foot are curling up and killing him. I took him to his neurologist and asked about the toes, he said "that's neuropathy" and there is absolutely nothing that can be done about it. (He didn't even look at them.) I really don't believe the neuro doc because, really, anything that happens to Bob, say Bob suddenly sprouts feathers out of his back, the neuro doc would chalk it up to "neuropathy". That's his catch-all, end-all, end of discussion...

So I take Bob to the primary care doc, the one who ordered PT/OT with the wrong codes, and while we are there, I ask about the curling toes. He looks at them and says it's a "muscle contraction" in the three middle toes.  I ask what can we do about it? and he says, well, he can send Bob to a podiatrist who could build special shoes for Bob that will cost $300-400 and insurance will not pay for it. Do you want to do that? Well, duh, no, because Bob doesn't wear shoes that much, being bedbound etc., and that's alot of money to spend for shoes for walking practice and by the way, I couldn't afford it even if I wanted to, but what about the pain? And he says ask the PT/OT when we get to rehab. Maybe they can splint it. Or something.

Well, still no PT/OT because he sent the WRONG CODES plus we have to reapply for Financial Assistance and god knows how long this will take---

And I won't even tell you about the fight I've just had Food Stamps who cut us back $30.00/month for no darn apparent reason and the 45 minutes I spent on the phone arguing with them with no luck....

And I won't mention the hours I spent this last week trying to scrub shit-stains out of Bob's Tommy Hilfiger sheets. And I won't mention how Bob is still trying to pee for hours and hours and hours with no luck..... And how he seems to be getting weaker and weaker and that's why I want him to get some PT... Or how the nasal spray that the Ear, Nose, Throat doc prescribed has caused a HUGE red rash all over Bob's belly, left arm and leg.... Or how dirty the house is, having not been cleaned thoroughly in over a year... and how darn depressed I've been feeling lately. Too depressed to even blog as much as usual...

Anyway, on Saturday, Chris comes over to sit with Bob so I can get to Wal-Mart and a couple of other stores. It's always a big dash to get home in time for Chris to catch the bus back... So shopping is not relaxing.

But I went to Wal-Mart to get, among other things, a pair of shorts for me (as mine have been mended umpteen times and are still tearing out) and get some cat food, and the usual Wal-Mart supplies, plus to look for some kind of toe splint for Bob to help his toes because who knows how long it will take to get him into Rehab.

Well, I go through all the "foot care" aisle, nothing there for toes. Go to the shoe department, nothing there... I do find some "toe cushions" which I think might help with walking practice, but still, they are just cushions. I'm thinking Bob needs some kind of hard splint to straighten his toes out, especially at night...

So, I am walking past the Hardware Dept. and see this thing. And it looks like it just might work for a toe splint. I pull it off the shelf and it's called a "Damage-Free Hanging Decorative Arc Hook". So it's a hook you paste on the wall. It's white molded plastic about 3 1/2 inches long and 1 inch wide, which seems to be just the right size for a toe splint. The hook-end is curved like a U and looks like it would curve perfectly over Bob's little toe and keep the thing in place.  The whole thing is "arced" so it's like a half moon and I think maybe, just maybe, I could put this under Bob's toes at night to stretch them straight and relax them and I could tape this hook with medical paper tape (which I happen to have a huge supply of, because for some reason the company that sends Bob's feeding tube supplies always sends me paper tape, which I have no clue what to do with, so therefore I have a stash of this stuff). The hook costs $3.98.

I stare at this "$3.98 Damage-Free Hanging Decorative Arc Hook" for awhile, wondering if my bright idea will work. Then I think, well, heck, if it doesn't work, it's not the first time I wasted $3.98... So I buy it.

That night, I attempt to apply my ingenious idea of the $3.98 Damage-Free Hanging Decorative Arc Hook splint on Bob's toes. I get out the paper tape and the $3.98 Damage-Free Hanging Decorative Arc Hook, and believe it not, the hook fits perfectly under his toes. I am trying to attach the $3.98 Damage-Free Hanging Decorative Arc Hook to his toes with the paper tape, but the tape is sticky and is sticking to my fingers and while I am fidgeting with the tape, that $3.98 Damage-Free Hanging Decorative Arc Hook springs out from under Bob's toes and flies past me onto the floor. Shit.

First I have to extract myself from the tape. Then I look on the floor. And damn, I don't see the $3.98 Damage-Free Hanging Decorative Arc Hook. I get down on my knees, thinking it must have sprung under the bed or chair or something. It's not there.

So now I'm crawling on the floor, looking for the $3.98 Damage-Free Hanging Decorative Arc Hook. But I can't find it. It's not there. Not anywhere.

It seems to have disappeared into a black hole.

And that's when I lose it. I mean I am so frustrated that I really, really lose it.

And I just scream! I mean, I really SHRIEK! Nothing intelligible, mind you, just GAAAAAA!!! The kind of noise that should send the neighbors all scrambling to call 911, but all our neighbors are all gone, having been foreclosed on so I don't have to worry about that. So I continue just shrieking, screaming, wailing because GOD DAMN IT my $3.98 Damage-Free Hanging Decorative Arc Hook has disappeared!!! And this is the LAST STRAW!

And when I stop screaming, stop shrieking, I start cursing. I tell you, I really let out a string of profanities, that I will spare you and not print here. Just say, I curse everything. God. The Angels in Heaven. Fate. Doctors, Hospitals, Government Bureaucracies. Stupid Paperwork. And the $3.98 Damage-Free Hanging Decorative Arc Hook. Nothing is sacred. I DAMN THEM ALL. I am just going BALLISTIC.  Cursing at the TOP OF MY LUNGS. Poor Bob isn't even immune to my curses. Hell, I yell at Bob, something like "Why did you FALL IN LOVE WITH ME??? YOU COULD HAVE FALLEN IN LOVE WITH ANYONE!!! WHY ME??? HANDSOME GUY THAT YOU ARE!!! ALL THOSE WOMEN YOU DATED!!! WHY DID YOU PICK ME??? WHAT DID I DO TO DESERVE THIS?!! AND WHY DON'T YOU GET BETTER??!!!!!"

And while I am screaming, this last bit, which was  "I CAN'T TO THIS ANYMORE!!!" I find myself suddenly exhausted and fall in a heap to the floor.

Then I just tumble into tears. Tears running down my face. Snot flowing from my nose. Gagging, gulping, gasping great sobs...

When I look up I see Bob, in his hospital bed, staring at me wide-eyed. And he beckons me, with his one good arm, a sort of "come here" gesture. So I go to him.

He gives me a one-armed hug. Tells me "It's OK."

He tells me, "I sorry."

He tells me, "I stronger."

He tells me, "I love you."

And then, after awhile. After crying on his shoulder. I gather myself together and notice--

down at the bottom of the bed----

there is the $3.98 Damage-Free Hanging Decorative Arc Hook.

On the bed!

It hadn't fallen on the floor at all.  GA!

So I grab the paper tape and attach the damn hook to his toes.

And you know what?

It worked.

Wednesday, July 11, 2012

One Hoop Jumped, One More to Go

Yesterday we saw Bob's primary care doctor and-- Call Security! Because someone must've stolen that man's brain! He actually agreed to order OT and PT at Outpatient Rehab. I couldn't believe it, as I really thought I would have a fight on my hands. This is the guy who twice before has told me that "Outpatient Therapy is not for chronic patients like Robert."

Now we just have to get the insurance to approve it.

I also asked him about aqua therapy (i.e. exercising in a swimming pool), as several people have mentioned this to me including two of Bob's home therapists. But the doctor said he did not think Bob was a "good candidate" for that kind of therapy, that Bob would "probably drown" because his "range of motion is too limited"....

OK, maybe no one stole his brain, after all. It was probably the OT's paperwork that did the trick.

Fingers still crossed on the insurance.

Sunday, July 8, 2012

Last OT Visit

Friday was Bob's last home visit with the Occupational Therapist. This is the first time that he actually used all the visits allotted by the insurance company. Usually, therapists discharge him sooner than we expect because, they say, his progress is too slow or they just sort of give up on him.

I must say, this OT was the best we've had so far. She taught me how to stretch Bob's neck muscles, perform gentle traction on his spine, how to position him in bed, and how to perform isometric exercises with Bob pushing his head back into my hands. She said she's noticed a definite increase in his neck muscle strength from when we started working with her.

Oh! And she taught me how to tip that wheelchair backward, which is great for washing his hair at the sink. That trick alone is worth its weight in gold.

Bob's new hand splint.
She also left him with this hand splint. The previous OT said he did not need a splint, that a splint was only for ease in cleaning his hand... This OT said it would help his pain at night by keeping his paralyzed hand from clenching. And she's right! It does help with his pain. We use it now, every night.

She also wants us to follow up with more OT at an Outpatient Rehab facility. I told her that would nice--if the both doctor and insurance would approve it. In fact, I'd love to get him back into Outpatient PT as well. But I explained to her how much trouble we've been having getting any kind of therapy for Bob, that his primary care doctor has been a big stumbling block in that respect. So, she wrote up a very formal looking "Progress Summary" addressed to Bob's primary care doc and ended it by recommending BOTH OT and PT at an Outpatient Facility.  Then, she wrote up another one, this one not addressed to anyone in particular, so if the primary care doctor doesn't write the script, I can take it to another doctor...

We'll see if this works! I really think it's what Bob needs right now, as he seems to be losing a lot of strength all around. Bob has an appointment with his primary care doctor next week, so I'll take the paperwork with us. Wish me luck! And cross your fingers that the doctor and insurance will approve!

Wednesday, July 4, 2012

Mathematics & Aphasia

Well, this is certainly weird. The other day, someone asked me if Bob could do math. My first thought was of course not, he doesn't even seem to recognize a five dollar bill. He also still has difficulty with reading and don't even ask about writing. So math would be harder than that, right?

But you know, the more I thought about it, I realized that I don't remember a single therapist ever giving Bob a math problem to try. So yesterday, while we were waiting for the OT to arrive, I brought out the eraser board we use for writing practice and wrote down this simple math problem:

2 + 2 = 

I handed it to Bob and asked him if he could do this problem. He took the marker from me and finished it:

2 + 2 = 4

I said, "Wow! You did it!"

He said, "Well, duh!"

I gave him a few more problems to try. He could add and subtract perfectly in his head. He could multiply but only the most simple problems. He drew a total blank at division... hmm...

The OT arrived and saw us doing math problems. She told me that math and language are located in different areas of the brain, so it was not surprising that Bob could do math but still have trouble reading. After she left, I googled this, but just found a lot of contradicting theories out there.

All I can say is this is certainly weird.