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....