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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."


Hasna said...

Dianne, will you publish the content of this blog in a book form? This will be a hit, I am sure. There's so much drama, so much tragedy, wit, good-nature -- all gushing out from this blog so eloquently. I feel for you and I admire you so much. I am going through the same thing with my aphasic husband, so I know what you are going through and I salute you for that.

Cheri said...

holy cow!!! Yay!

Jenn said...

Oh thank God. Thank God! Thank God!!!!

p.s. Re: Hasna's post above...your blog in book form....I'd be most happy to help organize this for you...

Anonymous said...

OMG....amazing!!! Way to go Bob...
Book thing is cool too.

Anonymous said...

You left me crying for happiness over that event. I'm so proud of both of you for all that you have done and accomplished over the past years. Bob is amazing and so are you Diane.
I agree with the above some point in the future, turn this blog into a book. It's an emotional roller coaster with so much heartache, promise, hope, and success.
Lots of hugs, Dan

Anonymous said...

Bob is lucky to have you on his team
Glad to see the improvement
Hang in there Bob and conquer the system too

metalgirl162002 said...

Wow! That was so awesome! Tell Uncle Bob I'm proud of him!

Anonymous said...

Diane, I thought I was going to read "and that's when I woke up" at the end. I felt so elated when I realized this wasn't a dream you had. Good for you and Bob. Love you,Aunt Rose

GirlWithTheCane said...

I'm so happy to hear that Bob got four more weeks.

I'm in Canada, and the rehab system is so different. The way they allocate resources where you are sounds - barbaric.

(I'm sorry, I got a little angry when I read your post...until the good news, of course!)

Take good care of yourself.

J.L. Murphey said...

Diane, I understand your pain. I have private insurance and denied disability. My insurance comes to an end in three more sessions and I had to decide whether to use my last three visits in OT or PT until the new year rolls around.

For OT I was discharged because between the spasicity, muscle spasms, and a AC separation of my shoulder OT was basically impossible without Botox injections and steroids. I was actually regressing functionally.

For PT the spascity, muscle spasms, ans clonus made me difficult to work with. I also started regressing functionally. I was basically in a no win situation. We are governed by our progress and what the insurance company's determine as satisfactory progress. And it sucks big time!

I'm glad he made satisfactory progress.