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Thursday, October 31, 2013

Happy Howen!

This morning, I said to Bob, "Happy Halloween!" Then I asked him if he knew what day tomorrow is? And he said, "Birthday!"

I was wowed, because last year, when I asked him the same question, he replied "All Saints Day" which is true, but not quite the answer I was anticipating. And, last year, when I asked that question again, he had told me "Monday?"

So this year he remembers my birthday!

This morning, I gave him an "assignment" to make me a birthday card. I did this because I thought perhaps a little project like that would get him back into his drawing mode. Hoping he'd make a little surrealist birthday card drawing. He hasn't drawn a thing now for several months, mostly because he's been fixated on the pain in his foot. Anyway, I left him with a clipboard and a folded piece of paper and his graphic art pencils and I went to the kitchen to do the dishes. Pretty soon he was calling to me and he sounded quite upset. This is what he had drawn:

Bob said, "Wrong!"

I said, "Yeah, I asked for a birthday card and that's a Halloween card."

He pointed to the word "howen" that he written on the card and said, "Not right!"

"Yes, it's not right. That's not how you spell 'Halloween'. Though it's close."

He tapped his forehead and said, "My brain -- fucked up."

I told him it was OK and brought him a fresh piece of paper to start over with. I went back into the kitchen and pretty soon he was calling me again, but this time when I arrived at his side, the paper was still blank.

He said, "Pen?"

So I went and got him a pen. Which he handed back to me. I said, "I'm not making my own birthday card." And I gave him back the pen.

He said, "Um, birthday?" and insisted on handing me the pen and I handed it back to him and told him I certainly was not going to draw my own card. This went on for awhile, the pen being handed back and forth, and me getting sort of frustrated, before I finally figured out that what he wanted was for me to write down the words "Happy Birthday" so he could copy them.

Which I did. And this is what I got:

All righty. Not exactly what I was expecting, but... it's truly heartwarming.

Meanwhile, Happy Howen, everyone! And Bob has thrush (in his mouth) and his PT/INR has skyrocketed and tomorrow I will spend my birthday taking him to the doctor's office.....

Thursday, October 24, 2013

And We Have a Date...

for mediation! Next month, Nov. 11. Though the defense argued against it, saying they are not ready, the judge ruled in our favor and ordered a mediation.

And it's "court ordered" so everyone has to show up. Including me. Bob is excused because of his medical condition. So, I have to find someone to take care of Bob from 8:30 a.m. until ??? Maybe all day. Because he needs peg tube administered meds at noon, I will have hire a freaking registered nurse! jeepers... Our attorney says they will pay the bill.... but... I guess it will ultimately come out of our pocket--

Nice to know, I can only be replaced by an RN! Wow. Guess I'm worth more than I think.

I just hope the defense will come to the table with some serious offers and a willingness to negotiate...

Saturday, October 19, 2013

Back on His Feet!

It's been six months since I took Bob out of Outpatient Rehab because of his foot problem. And six months since he has actually stood up or walked on the parallel bars.  In fact, six months without any formal exercise at all. The pins from the last foot surgery were removed on Tuesday and the foot surgeon gave the OK to do some weight bearing exercises.

Of course, Bob did not want to do this, as he still insists his foot "hurts".

The pain in his toes is baffling both the foot surgeon and the pain management doc. The foot surgeon says "it should be feeling better by now" and suggests maybe Bob's got some kind of nerve pain going on. The pain management doctor thinks that Bob is "fixated" on the pain, that because of his brain damage, he has "nothing else to occupy his mind" and therefore becomes "fixed" on his foot and the pain sensation which only makes it worse....
Bob & PT, first time on his feet in six months!           

I don't know which doctor is right. But I figured, it was time to try to get him back on his feet.

"Tucking in his tush"
So I made a deal with Bob. I told him that I would drop my idea about checking him into the hospital for inpatient therapy (he absolutely does not want to do this) IF he can get up on his own two feet here at home. And he agreed to try.

Yesterday, the PT was here and I rolled Bob into the hallway by the rail. When Bob realized where we were headed, he said, "NO WAY!" and I had to stop and remind him of our deal.

Then he said, "I'll try." But I could tell he was not really into it.

Then, lo and behold,  he managed to stand up on the first try!

Both the PT and I were very impressed, because we both thought he would not do so well. I mean, it has been over six months!

The PT said, she really didn't have to help him up. "It was all Bob!" Though she did have to help him "tuck in his tush", so he wouldn't fall backward into the chair...

If looks could kill... but he did it!

Of course, he refused to try to take a step. But he did do a sit-to-stand three times!

Although he was not a happy camper and complained all through it. Which lead the PT to remark, "Well, Bob, you certainly are speaking better today!"

All in all, I am one proud wife!

Friday, October 18, 2013

Going, Going...

And almost gone. I'm talking about our next door neighbor's house, formerly known as "The Window Pisser's House", which looks like this at the moment:

And I guess we will have to start calling this place "The Window Pisser's Lot"!

What do you think? Plenty of room for a pool for aqua therapy for Bob!

Though the word on the street, via our self-described "neighborhood busy-body" is that the owner of the lot is going donate it to a non-profit organization for use as either a rehab facility or half-way house.

We'll see what happens.

Time's they are a-changing...

Sunday, October 13, 2013

soooooo tired...

This week, we were coming home from a doctor's appointment on the wheelchair transport, when the driver asks me, "Is he OK?" (meaning Bob) and I turn to see Bob sort of leaning to the side of his wheelchair, his left hip raised off the seat. And I think, oh shit, and I mean that quite literally because that is what he was doing, right there, in his wheelchair, in the back of this transport van and we still had 20 miles to go before we got home.

We get home and, you know, it is nearly impossible to change a diaper in a wheelchair, so I tell Bob that I will get him into bed and then change it. So poor Bob has to slideboard onto the bed, meaning there is going to be an even bigger mess in his pants, but I get him onto the bed and get a washable bed pad under him and when I cut off his Depends, there's nothing there. I am thinking huh? and then I realize there is a rock hard stool stuck half-in and half-out, so I have to pluck that thing out, plus dig out some more and give him a suppository because there's still stuff stuck up there, then spend the night cleaning up diarrhea squirts.

And I tell you, I am getting sooooo tired of all of this.

The next day, we have a "day off" meaning no appointments to go to, and Bob is still complaining of constipation, so I give him a laxative and that afternoon, boom, it hits him and now I've got a bucket of diarrhea that soaked right through the Depends into his shorts and onto the bed pad. And while pulling off his shorts, that stuff is getting all over his legs and my arms and everywhere. Then I spend the rest of the afternoon cleaning up this stuff and doing an extra load of laundry.

And really, I am getting so tired. Sooooo very very tired. I wake up tired. I walk around all day feeling tired. My legs ache, all the way to the bone. In fact, I think my bones are even aching. And I've taken to setting the feeding pump rate a little lower at night so that it's done at 7:00 a.m. instead of 6:00 a.m. and I can grab an extra hour of sleep in the morning, and I still am tired, and of course that puts me off schedule for the whole day.

Yesterday was Saturday, so another "day off", and I go into my office in the morning, thinking I might blog, though I'm so tired I haven't a clue what to blog about, and I find that one of the cats has vomited all over my desk. I mean, it was everywhere, down the front of my computer printer and splattered all the way across my desk top and heck, it even got into my little desk top electric fan and I had to clean that out with a Q-tip. So I'm cleaning up all this cat puke and I look up, into Bob's room, and there's water on the floor under Bob's bed and I'm thinking what? So I go out to check, and here the darn catheter bag as sprung a leak and it's not water, it's urine. So now I'm not only cleaning up puke, but also pee....

I tell you, I am sooooooo very tired. It doesn't help that this is shaking down to be one of those months with about six billion doctor's appointments crammed onto the calendar.

I've been taking care of Bob and everything else, all by myself, for nearly three years now, without a break, without a vacation, without even a day off, and I am really, really, very tired.

A year ago, someone asked me what I would do if I had the whole day to myself. A full 24 hours to do anything I wanted. And I told them I would spend the whole day in bed. That was a year ago. And right now, I could do with a whole week in bed... maybe two.

I am seriously considering asking Bob's primary care doctor if there is a way we can admit Bob into the skilled nursing unit over at the charity hospital for a few weeks. They have PT/ST/OT over there. He could get started back on therapy. But I'm not sure if the insurance will approve it, or the doctor will order it, or Bob will even want to do it.  I'm not sure if financial aid will pay for the co-pay, and that would be the only way we could afford it. But jeepers, I really, really need a break and just let someone else take care of him for awhile. Of course, this would have to happen after Bob's blasted foot heals up from the surgery. Because first, he will need to be able to put weight on that foot, then it would be great for him to start doing some sort of exercise/therapy. With the exception of the home PT who stretches his neck, he hasn't had any real PT since early last spring. And I tell you, his legs are just wasting way. I am thinking, we could start him on inpatient therapy and move to home health therapy and then to outpatient rehab. He would be starting over, from square one, but truth be told, he needs it. This foot/dystonia thing has really taken a toll on him.

Then, again, I worry that if I put him a hospital, will he just come down with infection after infection? Or come down with pneumonia. And will the nurses screw up his meds? Or worse? Because after what we've been through, I have a hard time trusting hospital staff to do their jobs.

So right now, it's just an idea...

And tomorrow, I have to get up at 5:00 a.m. because we have to make a 10:30 transport for another doctor's appointment plus the blood draw guy is due at 8:30 then the home health nurse has to do a re-eval after 3:00 p.m. for his feeding tube replacement--- and jeepers!

Have I mentioned how very very tired I am?

Monday, October 7, 2013

Post Traumatic Interrogation Syndrome

I'm not sure if there is such a thing as that, but if there is, I am certainly suffering from it this past week. I keep replaying the deposition, over and over, in my mind. And worse, I keep replaying the events of the morning of October 21, 2010. Over and over. Like some nightmarish horror movie. And I can't stop thinking about this stuff. And I am shaky and trembling and prone to fits of crying. I had thought once the depositions were over that I would be fine. But I am not. Instead, I am a complete basket case.

It doesn't help that once again it is October and the third anniversary of the stroke will be soon upon us.

Or that Bob is still constantly complaining about foot pain.

And I am strung out. Exhausted, even.

I go about my daily duties and I cannot stop thinking about the morning of October 21, 2010. And I can't stop seeing that nurse, in my mind, that nurse wearing a starched white uniform -- like a throwback from the 1970's -- like some kind of Nurse Ratched, complete with the little hat. Because truly, that's what she was wearing that morning. With a glittery silver angel pinned to her bosom. White sheer stockings. White shoes. Hair tied in a bun.

And me, running after that nurse, shouting: Something's terribly wrong with my husband!

And that nurse saying, "Isn't your husband always like this?" and "I didn't think he seemed right this morning."

And at the deposition, my attorney touching me gently on the shoulder, saying, You're shaking. Do you want to take a break?

Me: No, let's please just get this over with.

And the questions being hurled at me, like What doctors, hospitals, clinics did your husband visit in 2005? In 2006? In 2007? And on and on, through the years. And I'm supposed to remember this stuff.

And feeling like a criminal. Like Bob was on trial. Like Bob had done something wrong instead of the nurses.

Then having to go through the events of October 21. Telling my story. Detail by detail. Down to the white starched uniform. Down to the time on the clock. Down to each person I spoke to and what they said and the partially dissolved pills falling out of Bob's mouth when he tried to speak. How he could only make noises. How he couldn't move. The terrified look in his eyes. How the nurse had just propped him up in bed and walked away. Reliving the whole thing. Moment by moment. What did you do next? When did you next see the doctor? What did he say? When did you next see your husband? What was his condition? Then what did you do? And breaking down, sobbing. Sobbing like a broken child. Right there in front of lawyers and strangers and a video recorder...

I do begin to wonder if I'm ever going to get over this.

We have a busy schedule this week with three different doctors' appointments starting with Pain Management today. I am hoping our busy schedule will help me get my mind off this stuff.

Thursday, October 3, 2013

Survived the Day

Well, our depositions are done and over and I must say it's a relief to have that behind me. But what a stressful day. I was grilled for nearly five hours and during the last hour, I broke down, several times, crying like a baby and went through nearly a whole box of tissue. Our attorney told me, afterward, that I did an excellent job and he couldn't be happier.

Bob's deposition lasted all about 10 minutes. It took longer to set up the video recorder than it did to question him. Then there was a very awkward moment when he was asked to raise his right hand to swear to tell the truth, and, of course, his right arm/hand are completely paralyzed, so that was impossible for him to do. So everyone was waiting for Bob to raise his right hand, and (I could tell) Bob was thinking huh? and I finally spoke up and said "he can't", and they finally asked him raise the left one. Then, though he really tried, he pretty much couldn't answer any of the questions, or answered them incorrectly.

All I can say is I'm glad it's over. And maybe life can get back to "normal" (whatever that is!) now.