And I'm Still Standing

Three years ago, tonight, Bob came home from the Acute Rehab Hospital. I remember it well. Such a relief to leave and the transport home cost $50.00. Jeepers.

This marks three years of full-time caregiving for me. Three years of cleaning up bowel movements, cleaning up urinary incontinence, managing his meds, daily feeding tube duties, dressing/bathing him, daily (sometimes 2-4 times daily) laundry, doing his therapy, scheduling appointments, fighting the system, trying to keep positive (not always doing that so well), trying not to cry (not always successful in that),  taking care of everything by myself, sleeping alone in our bed, fretting about all these medical bills that we can't pay, praying the washer/dryer don't break, etc., etc...

Three years of ups and downs. Of trials and tribulations. Of hopes and hopes dashed and hopes again and dashed again and new hopes and always trying to keep hope...

I know I am older, wiser, and, I think, a stronger person after all of this. Believe me, this is the hardest thing I ever have done...

Back then, I gave myself a year. I figured, if he wasn't better in a year--- you know, walking, talking, eating -- I'd take those doctors' advice and find a nursing home for him.

But he wasn't and I didn't.

I couldn't, because I love him so much and know that he is happy to be home and this is where he wants to be and I am happy he is here with me....

It's been really hard.

But I am still standing!

Pretty amazing, if I don't say so myself. Didn't think I could do it. Never, in a million years, did I think I could do this. If you would have asked me, say four years ago, could I do this? I would have laughed....I wouldn't have thought myself capable. So! I am truly amazed at myself. But, you know, a girl's gotta do what she's gotta do....



Happy New Year!

Christmas at The Pink House

And, of course, Christmas would not be complete
without a Grinch....

Holiday Greetings

Merry Christmas & Happy New Year from all of us at The Pink House on The Corner!

Bob, Diane, Boomer, Zenith & Ripley

The End of an Era

Those of you who know me well, might want to read this post sitting down. Then take care not to fall off your chair.

For others, let me fill you in on some background material.

I, personally, have not owned a television set for nearly 30 years. TV-less by choice, I called it. And I was hard core, a proud member of the 1% of Americans who ban television from their homes--often lending my dog-eared copy of Jerry Mander's book, Four Arguments for the Elimination of Television out to would-be converts. That book delves deeply into the psycho-social effects of television on individuals and society as a whole. The author describes the conscious state a person enters into while watching television as a state of "wakeful dreaming" that is close to hypnotism.  My own personal belief was that TV was not only a big time waster, but a brain numbing addiction, a social isolator and a way to miss out on "real life".

When Bob moved in with me in 1994, he owned a television set. I told him, in no uncertain terms, would I allow it in my apartment. We argued. I think that was our first argument. Then, we compromised. He could be bring the TV if he put it in the closet.

Which he did. Then after a few months of learning to live without television, he sold it.

People used to ask us all the time, what on earth did we do if we didn't watch TV? When we told them we talked to each other, that our nightly ritual was to sit out on our front porch and just talk, people asked, "What on earth do you talk about after 15 years of marriage?"

Well, we talked about everything. How our day how gone. The weather. The neighborhood gossip. The news in the newspaper. My writing. His art. Books we were reading. We talked about absolutely everything.

Then about 4 years ago, Bob came home from a neighborhood garage sale carrying an old TV set and a DVD player. I nearly dropped my jaw. What are you doing with that thing?!  I asked him.  He told me he had bought it for $5.00 and wanted to put it in the back bedroom which he used for his office. Don't worry, he told me, it wouldn't be connected to cable or an antennae, and we'd only use it on special occasions to watch a movie on a rental DVD.

Then, three years ago: the stroke and aphasia. And the end of our nightly conversations...

Before Bob came home from the hospital, I had my dad and my uncle help me re-arrange the living room. Out went the Victorian parlor set, to make room for Bob's hospital bed. In came that TV set and DVD player and the 1940's sofa from Bob's office...

Since then we've watched a lot DVD's. I would run every week to the library where one can check out DVD's for seven days for free. After three years of this, I do believe, we've seen every movie on the shelf -- some of them twice. And that old television set was on it's last legs...

The sad thing was, that, when a DVD wasn't playing or I wasn't available to occupy him with some task or therapy, Bob was pretty much lying in his hospital bed staring at the ceiling and fixating on his pain...

So for Christmas, I broke down. And, with the help of Santa Claus, bought a 32 inch HD flat screen Panasonic television set. Then hooked the whole thing up DISH satellite's cheapest plan. And I still can't believe I've done that. And I'm still trying to figure out how the thing works. And I hope I can pay the monthly bill!

I am still no fan of television, which I find extremely distracting and addictive, and I know this is going to take some getting used to, on my part. Even right now, while I write this, Bob is watching a movie and the sound of it keeps interrupting my train of thought. I tell you, it's hard to blog with the television blaring in the background!

It's also hard to admit that our lives have changed so much since this stroke. And to admit a bit of acceptance of the fact that our lives will never return to the way it used to be.

So we've joined the 99% of Americans who have network television in their homes. Make that 99.1%!

Light at the End of the Tunnel

Finally! We have a court ordered trial date set for the week of May 5, 2014.

Going Re-Certifiably Crazy!

Well, this past week or so has been a doozy as far as my frustration level goes.

First, there was all the government forms to fill out to "re-certify" Bob for his benefits. We have to do this re-certification every six months for some darn reason and every six months they want not only cumbersome online forms filled out (including listing all household expenses etc.) but also photocopies of his medical expenses sent to them. This time, while filling out the online form, when I was at the very last page, and had spent nearly two hours filling out these darn forms, the system kicked me out and I had to START ALL OVER --- gggggrrrrowl! Then, while photocopying the medical expense receipts/invoices, my @#! printer kept telling me "FATAL PRINTER ERROR!" and shutting down. Double gggrrrowl! But I finally got it all together then had to rush out to the post office, park two blocks away as the parking lot was filled, wait in a long, long line of folks sending off Christmas packages.... ggrrrr....

But that's done.

Add to this, physical therapy is all screwed up.

You'd think, after a doctor orders PT and the insurance approves it, well, we should be all set for the approved 20 sessions before the end of the year.

At least, that's what I thought.  Until the PT doesn't call to set up appointments. And I have to call her, and wait for her to call back only to be told that Bob needs a "re-certification" (there's that word again!) from the PT evaluator, so the PT evaluator is supposed to be calling me to set up a time. So, I wait again, no one calls.

So, I call the agency and get some answering machine and leave a message. When I get a return call, finally, I am told THEY DON'T HAVE A SCRIPT for PT.  And I'm thinking, how can they NOT have a script when the insurance has already sent ME a letter approving it?? I mean, someone had to send the script to the insurance company and THAT would've been the agency, right?

Good grief.

On top of that, the home health agency decides to send a different nurse here last week because we also need a Home Health Re-Certification, which is different than a PT Re-Certification.  I talk to this nurse on the phone and ask him why he's coming. Because it makes no sense to me as we always have the same nurse for re-certifications, the one who comes every eight weeks to replace Bob's feeding tube. But the nurse insists he has to come to do the re-certification and I ask him, since he's coming, would he please check on the PT situation as it seems they've lost the script and he says he will.

So when the nurse comes on Tuesday, he tells me that he checked on the PT order and found the insurance had ONLY APPROVED ONE SESSION FOR NOVEMBER. And I'm like, WHAT???!!!

So, I show him the copy of the letter the insurance company sent to me approving 20 more sessions through the end of the year. And he agrees with me, they must have a script for that, or I wouldn't have gotten the letter. So he takes a copy of the Approval Letter from the insurance company back to the home health agency.

Then on Wednesday, our regular home health nurse calls and says she needs to come over and do a RE-CERTIFICATION.  And I'm thinking, You've Got to be Kidding!? And tell her so. She tells me that she was not aware of anyone else coming over to do a re-certification and she'll check into it.  I also tell her about the PT problem we are having. And she says she'll look into that, too.

And she calls me back.

And tells me, that the home health agency screwed up and sent the other nurse to do a "weekly evaluation" because someone thought Bob was having "weekly home health care" instead of every eight weeks. Anyway, this nurse still needs to come on Friday to do the actual Re-Certification.

Which she did. And she promises to correct the PT problem, too. She promises someone will call to set up the PT Re-Certification. Let's hope they do call before the end of the year, so we can use these 20 visits -- because after that we'll have to get another script from the doctor, another insurance approval and another re-certification...

And I tell you, some days I feel like there is a conspiracy out there, set up just to drive me crazy....

One October Morning

It was early October, right around the time of my deposition, and I had just finished up with Bob's morning routine: disengaging the night pump, mixing his morning meds, flushing his tube, when I heard the distinct sound of a helicopter hovering near our house.

Now this is not highly unusual. We live in downtown, in a large city, and often choppers can be seen and heard hovering near the interstate if there is a traffic accident, or around the stadium on the day of a big game, or dashing to and fro from the hospital's rooftop landing pad.

So I didn't think much of the situation and I leashed up Boomer and headed out the front door for our morning walk.

The sun was just beginning to rise and the clouds in the eastern sky glowed orange and purple and red. I looked up, toward the interstate, expecting to see the helicopter there, but it wasn't. When I turned, I was rather surprised to see a bright reddish orange helicopter hovering directly above our garage in our backyard. Which was curious, to say the least.

But I still didn't think much about it. And Boomer and I headed east, down our block, on our usual route toward the alley. We were walking at an old dog's pace, Boomer stopping to sniff and pee along the way, when the helicopter flew from the back of our house to the street and turned east and followed us.

Hmmm, I thought, this is weird. Not to mention, a bit annoying with all the noise. But Boomer and I continued moseying down the block, to the alley, where we turned north and began our trek down the alley.

And the helicopter turned north. And followed us into the alley.

Now this was really peculiar. Not to mention, sort of spooky. As the thing was right above us and flying low, just above the treetops, and flying slow, keeping our pace.  When I looked up, all I could see was its underbelly and those "skids", you know, the long landing feet. I was starting to get a little paranoid.

By then, we were halfway down the alley. And the thing was still above us. So, I decided to turn around and head back toward the street, if for no other reason than to get away from the thing.

And the helicopter started moving backward, staying right on top of us. The thing actually flew backward all the way to the street and always staying right above us.

By then, my heart had quickened. I mean, I was really getting scared. I kept looking up, expecting to see, I don't know, a gun come out of the window aimed at me. But I couldn't see anyone or anything except the underbelly of the helicopter. Directly above us. When we reached the street, my first instinct was to dash directly home, to the safety of the house.

But then I thought, no. I did not want this thing to follow me home.

So I went the other direction, again traveling east. This time I picked up our pace, pretty much dragging Boomer along with me.

And again, the helicopter followed us. Keeping our pace. Down the street, to the next block, where I ducked into the next alley.

And still the helicopter followed and turned down the alley with us.

I crouched behind some bushes under a big oak tree, pulling Boomer in next to me.

And the helicopter hovered above us, just above that tree.

I could see the underbelly of the thing. And the skids. Through the tree branches.

Five minutes passed. I did not move. The helicopter did not move.

I was beginning to think I was losing my mind and imagining the whole thing.

Then a fellow on a bicycle rode past us. He said, "Hey, there's a helicopter above you!"

And I thought, duh. And rather hoped the helicopter would take off after him instead of me. But it didn't.

Ten minutes passed.

Then finally, I heard the helicopter take off. I watched it fly, first straight up in the air, then turn and travel, quickly, over the rooftops, toward the west. A bright reddish orange dragonfly. Without a single identifying marking on it.

Boomer and I came out of the bushes and, although we were a bit shook up, we finished our walk.

That, my friends, is a true story.

And if anyone has a clue why an unmarked reddish orange helicopter would follow a middle-aged woman walking her dog in the early morning -- please let me know!

100 Things to Blog About and Not Enough Time!

These past few months have been very busy for me, especially with the lawsuit. First, there was my deposition and all the preparation for that, then reading the transcript from my deposition (around 400 pages) and making "corrections", then I sat in on a doctor's deposition, then mediation, and all the preparation for that, and now reading through the depositions of the nurses, etc. It's all been quite time consuming.

Add to that, there is still a constant stream of "authorizations" to sign. These are coming from the defense and are to authorize release of information (medical and other). These "authos" are e-mailed to me by our attorney's office and then I have to print them out, sign them or have Bob sign them, scan them back into the computer and e-mail the signed copies back. This process can take all afternoon, if there are a lot of them, and it doesn't help that my computer is slow and my ancient printer keeps jamming.

As part of the preparation for mediation, our attorney hired a "settlement consultant" company (who knew there was such a thing?). So I've also been meeting/e-mailing/talking on the phone with the settlement guys. Part of their job is to figure out a monthly budget for Bob's care. And then to figure out what dollar amount we would need in a settlement to cover this monthly budget for his lifetime after all the attorney's fees, insurance liens, etc. are deducted.

I tell you, I am learning a lot about the legal process.

Count me as naive before, but I thought if a person won or settled a malpractice lawsuit, they were just handed a check!

Turns out, this is not the way it works. Instead, there is something called a "structured settlement" which involves the defense purchasing an annuity through an insurance company, which in turn provides the plaintiff (in our case, Bob) with a monthly allowance for the rest of his life.  This allowance is monitored/handled by a trust fund and can only be used for his care and comfort.

Although we did not settle in mediation, there is still a chance to settle out of court. Fortunately, any talks of this sort can be handled on the phone or in writing, so we won't have to meet face to face with the defense attorney again--which is good, because, I tell you, I had a hard time controlling my temper/emotions in the face of all her lies and allegations.  And although settling out of court may or may not happen, one must be prepared for this option.

So, in order to prepare --and believe me, I need to be prepared for this because the last thing I want is to be handed a $ amount and think, wow, that will work, only to find out, after everything's deducted, that Bob is getting shafted in the end-- I've been running through the numbers with the settlement guys and also on my own. And it's mind-boggling, to say the least. But I need to protect Bob and am willing to fight for him, if necessary. I think our attorney is surprised at how involved I want to be in all of this. And how stubborn I can be on certain issues!

One thing that I have learned is that I will get zip, zero, nil in this lawsuit -- so much for my pain and suffering. The problem is that any money I'd receive would count as an "asset" (any money held in a special needs trust is exempt) and Bob could lose his government benefits if our household "assets" are too high...  jeepers...

Anyway, add to all of this my daily caregiving duties and that's what's been keeping me away from this blog and, tell the truth, I've had so many things I've wanted to blog about -- including fighting dumpster fires and being chased through the alleys by a helicopter! Maybe one day, I'll get to those exciting stories. Right now, I must leave you, to clean out the fireplace and haul in some wood so that we will have heat tonight, and then the therapist is due this afternoon and I still have to wash Bob's hair...

Never a dull moment, here at The Pink House!