Total Pageviews

Monday, December 31, 2012

A Two Year Caring Anniversary

Bob, one month after being discharged from the hospital.
Today marks two years since Bob was discharged from the hospital. He came home a broken man. Severely disabled and in uncontrolled pain.

He came home able to say only a few words, such as "radio" or "window" and these words he repeated over and over and over again.

He came home weighing 145 lbs, a mere shadow of his former self.

Two years ago, I spent the week between Christmas and New Years fighting with the staff at the Acute Rehab Hospital. They were not going to allow me to take Bob home. The physiatrist (rehab doctor) pulled me aside, sat me down on the chair in the hospital hallway, and told me, in no uncertain terms, that I needed to understand this: "your husband is nursing home material, he will never be going home."

In my heart, I knew this wasn't true. Not Bob. And in my heart, I knew that sending him to a nursing home would be a death sentence. I felt I must get him out of the dirty medical facility environment as Bob continued to come down with infection after infection and already had dealt with two bouts of pneumonia and spent most of the time in "quarantine". But most importantly, I must get him to a pain management specialist to control his pain, and I must also get him to see his other regular doctors because I did not like this new mix of drugs the hospital had put him on.... and, too, I felt that I could take better care of him than any nursing home. But no one was listening to me.

The social worker at the hospital actually lined up a nursing home and had the coordinator meet with me at the hospital to begin Bob's admission process. This meeting was arranged behind my back. I felt defeated. Cornered. I did talk to the nursing home admissions coordinator. I asked her questions, such as what do they do for pain management? (Answer: pretty much nothing but keep him on the drugs he's already on) and how much therapy would he get? (Answer: 15 minutes a day, if lucky.)

I felt like I would have to figure out a way to smuggle Bob out the hospital, kidnap him in the middle of the night, sneak him out the back door, before they sent him away.

Bob, today.
Then, the nursing home called and said they had ran Bob's insurance through and now needed a co-pay of $3000.00. I told them, sorry, I didn't have the money. So the hospital was forced to discharge Bob home. They were not happy about it.

The therapists, at first, refused to train me on how to transfer Bob with a slide board. They told me that I was crazy, that it required two people to lift Bob from bed to wheelchair. They ordered a hoyer lift to be sent to our house. I cancelled the order and insisted they teach me how to use a slide board.

The rehab doctor pulled me aside again and also told me, in so many words, that I was crazy. She said she was certain that I would be calling her up within a month asking for a referral to a nursing home. She said that I would never be able to "handle it". That she could not condone my decision because Bob was "too frail" and "medically unstable".

Then, one of the nurses pulled me aside and whispered that, though no one could say it out loud, the nursing staff was on my side. She said, she knew I was making the right decision. She said that I was right, Bob would only decline if he went to a nursing home.

And when I pushed his wheelchair out of that hospital, the ladies who volunteered at the front desk actually stood up and clapped.

That was two years ago. On New Year's Eve.

And it has been one long damn two years. Two years of caring for Bob 24/7. Without a vacation, weekend or holiday off... Heck, two years without a decent night's sleep! But also two years without a single hospitalization or infection, and Bob has gained back all of his weight and is happier and healthier than ever. And he loves being home.

And I wouldn't have it any other way.

Happy New Year

Saturday, December 29, 2012

I swear, This doctor is trying to kill me

So, I think I have it all set up. I contacted the insurance company and got an approval for a home health care nurse to come to our house weekly to draw Bob's blood. Then yesterday, I get a call from the insurance company telling me that the doctor refuses to sign the necessary paperwork and Bob's home draws are, therefore, cancelled.

I'm thinking, what the f---? So I call the doctor's office and talk to the nurse who tells me this decision was made by The Big Guy, I mean, The Big Kahuna, the doctor who owns the clinic, the Big Cheese. It's this pompous ass, excuse my French, who declined to sign the order.

The reason for this is, The Big Cheese says, that Bob is "too mobile" and, um, "too healthy", and (get this) "able enough" to get himself to the clinic to have his blood drawn every week. And therefore, Bob isn't "allowed" to have home health care.

I am sorry, but I about went through the roof! Because who does this hifalutin, pretentious jerk-off of a doctor think he is? God? And just how the hell does he think Bob is "able enough" to get to a lab? Weekly, mind you. And doesn't he realize that the only way Bob gets anywhere is if I push him there in his wheelchair? And is this arrogant, egotistcal, self-important bunghole of a doctor going to come to my house in his red freaking Ferrari and pick up Bob and take him to the clinic for me? (And yes, I am using my thesaurus today.) And, mind you, the clinic this overblown dickhead of a doctor wants Bob to go to is his clinic, so he can line his already overfilled pockets with more cash.

And jeepers, everyday I get out of bed with an aching back and sore legs and I am tired. I tell you, I am bone weary and near exhaustion with what I already do and this pinhead of a doctor wants to add pushing Bob to a clinic for a weekly blood draw to my already overwhelming list of chores?

Bob's regular doctor is on vacation until next week. I tell you, I will have to get on the phone and get a hold of that guy and if he insists on backing up The Big Cheese, there will be carnage. Mark my words.

Because, I tell you, this little girl is pissed! What a way to start off the New Year.

(PS: Phew! That felt really good! Just to get that off my chest.)

Sunday, December 23, 2012

The Plumber and The Bowel Movement, A (sort of) Christmas Story

'Twas the week before Christmas
I stepped through the bathroom door
And saw the toilet was leaking
All over the floor.

So I flew to the kitchen
And grabbed the phone book
And called up a plumber
To come take a look.

The plumber arrived,
He was no jolly elf,
He plunked down his tool box
On top of my shelf.

He got down on his knees
Right there on the floor
And examined the toilet
For five minutes or more.

"Ah ha!" He exclaimed,
"This thing-a-bob is busted!
These gaskets are cracked!
And the screws are all rusted!"

"And this little gizmo
It needs some tweaking
If I fix all of that
It will surely stop leaking."

"The good news," he said,
"I can fix it in a flash,
The bad news: it will cost you
Three hundred cash."

Jeepers, oh lordy,
Good grief and oh my!
But I told him to fix it,
Though I thought I might cry.

Then from the other room,
I heard a big clatter,
And went over to Bob
To see what was the matter.

 And there to my horror,
Quite literally, Oh shit!
I grabbed my latex gloves
And my clean-up-Bob kit.

Now this was embarrassing
With a plumber in the house.
So I cleaned him up quietly
As quiet as a mouse.

Then from the hallway,
I heard the bathroom door close,
And when the plumber came out
He was holding his nose.

I stood there before him
in all my poop-smeared glory
I'm sure that the scene
was really quite gory.

He said, "I don't know how you do it,
I don't think I could.
My wife couldn't do it,
Though I hope that she would."
Then I scooped up the mess,
And took it out to the trash
The plumber handed me an invoice
That read: 250 cash.

I thanked him that dear plumber,
I thanked him again
And got out my checkbook
And picked up my pen

Then he said, "What the heck,
It’s the Holiday Season,
Make out that check
For 200 even."

So I started to write,
But he stopped me again,
And said, "Just give me 150"
And I put down my pen.

And hugged that dear plumber
I hugged him profusely,
I hugged him real tightly
Then I hugged him quite loosely

He got into this truck
And as he drove away
And I heard him proclaim
“Have a Happy Holiday!”

So if you need plumber
But the price needs improvement
Just invite Bob over
To have a bowel movement.

The End

That, my friends, is a true story.

Merry Christmas from all of us at The Pink House on the Corner!

Saturday, December 22, 2012

Phone calls, paperwork, phone calls, paperwork, phone calls.....and then you get stuck in the elevator....

The other day, I told Bob he needed a Business Manager. Seems like all I've been doing this past week is filling out paperwork and making umpteen phone calls and there's no time for anything else.

It's bad enough having to switch Bob's Medicare Plan over to another company because of the big dispute between the hospital and United Health Care (and yes, still no rehab for Bob, so much for "continuation of care") but slogging through those multiple different plans, Medicare A B C and D, and if you've ever done that, you know what I mean. It's confusing as all get-out to me, especially when your dealing with seven different doctors and 16 different prescriptions and you need to find a plan that covers them all... And our government expects our elderly population to figure this stuff out? I finally got him signed up with a Blue Cross plan, only to find out this week that the lab they use does not do home draws.

Now Bob has been having a home draw weekly. This is where a lab technician comes to the house and draws his blood for testing. I guess I've gotten pampered by this service, because I just cannot imagine carting him off to a lab once week, arranging for transport and all that involves, wasting an entire afternoon for a procedure that takes about 5 minutes... And you know, the transport company will not wait at the door for you. They have to drop you off and come back later, with another "45 minute pick up window". Which is why such a trip will take all over afternoon. Not to mention the expense of the transport ride.

So I spent a good deal of time trying to figure a way out of this situation and keep our home draws coming. I was told, at first, the only way to get a home draw was to use an "out of network" lab and that meant paying a 40% co-pay (figure about $36.00/weekly) which we just cannot afford. Our home draws right now are free. So after making many phone calls, someone suggested to call a home health agency who may be able to send a nurse out to do a home draw.

Now, home health care has a zero co-pay, so this is a good idea. I call and get it all arranged, except I have to now get a doctor's prescription/referral to the agency. So Bob and I go to see his primary care doctor, who that day has an emergency and is out of the office, and we have to see a substitute doctor, who I ask for the prescription for home health care and also a referral to get Bob back into Rehab with the new insurance after the first of the year.

Afterward, I have to go to the referral department to pick up the paperwork, but lo and behold, she's only got the order for rehab not home health care. So after waiting and waiting, and Bob getting very antsy, finally a nurse comes out and tells me that she cancelled the referral because they cannot refer Bob to home health care because he is "too mobile". She says if he can get to Outpatient Rehab and he can get to a doctor's appointment, he does not qualify for home care.

I can't believe it. Is she nuts? I tell her to look at him, look at Bob, for crying out loud, the only reason he is sitting in that office is because I hauled him there and we took the wheelchair transport, and the only reason he will get to Outpatient Rehab is because I will push him there, six whole blocks mind you, but no, she says, the insurance will not approve home care for someone as "mobile" as Bob. So, I say, what am I supposed to do? She says, take him weekly for lab draws. (Easy for her to say. Is she trying to kill me? Maybe she'd like to come pick him up? And bring him home?) Or, she says, call the insurance company.

We leave the doctor's office, and I am very upset, and we're rushing to get to the transport on time, and then, just then, Bob's wheelchair front wheel gets stuck in the elevator door. You know, the little open space on the floor where the elevator door closes? His front wheel gets stuck in that, and I'm trying to pushing him through and damn doors are closing on us! GA! So here we are, both Bob and I screaming "Help!" and finally a security guard comes to the rescue. The guard has the gaul to tell me to "back the wheelchair" into the elevator from now on, then I wont have this problem, but um, the reason he's coming out front forward is because I backed him in upstairs and there was no room in this tiny elevator to turn the chair around.... grrr...

So the next day, I am back on the phone with the insurance company for nearly two hours, talking to various people, because no one seems to know the answer to my problem. Finally, I do get connected to someone who tells me that if the doctor orders a home draw from home health care and rehab, well that's the doctor's discretion (not the nurse's) and they will cover it.... Jeepers, and thank-you-very-much, and I hope she is right. So, I finally get it all set in motion, a home care account set up for Bob and request for referral sent to the doctor and I call that nurse who put a kabosh on the home care referral and tell the insurance says we can do this....and we'll see what happens after the 1st....

And I won't even tell you about-- how I've been trying order a new mattress overlay for Bob's bed and having been trying to order this darn thing since September. He needs the overlay to prevent bedsores, but his bed is a "tall" hospital bed and no one seems to carry a "tall" overlay, or I should say, the companies that take his insurance do not seem to carry the "tall" overlay. Every time I think I've found the right overlay, they either deliver one the wrong size and I have to send it back or they call me to tell me there some darn reason they cannot get it in. I am on my sixth medical supply company, who is now trying to special order one for us....

Or about spending a week filling out government "recertification" forms for the end of the year...

Or about trying to order some medical supplies on-line and the "checkout" keeps telling me my zip code is wrong and throwing me back into my "shopping cart"...

Or about trying to e-mail some attachments to the attorney and my browser keeps failing...

Or that I still need to fill out a new financial aid application for 2013 so that Bob's rehab co-pays will be hopefully covered again...

And add all this on top of what I normally do. And everyone else is out there preparing for the holidays, while I'm just trying to keep Bob's care continuing into the New Year.

I will tell you this: I need a raise! ha! And a new job title. "Caregiver" just doesn't cut it. How about Care Coordinator? Or Medical Manager? Or Master Juggler of the Universe? Or.... ? Any ideas?

Saturday, December 15, 2012

And--- We're Off!

Yesterday, the hospital was served with a "90 Day Notice of Intent to Sue". This legal document is about 65 pages long and outlines our case against the hospital, describes the events of that fateful night and includes affidavits of two expert witnesses, one of which is an ICU nurse who testifies to the negligence of the ICU nurses; the other is a vascular surgeon who testifies that if the nurse had notified a doctor at the onset of Bob's stroke symptoms (instead of 11 hours later) and if Bob had been taken back to surgery within 1-2 hours (instead of 12-13 hours later) that Bob would not have suffered any "long-term neurological deficits".

At this time, the hospital has 90 days to respond, at which point they can agree to proceed to a settlement, or they can deny any wrongdoing and the lawsuit will be formally filed and we will proceed to a jury trial.

All I can say is, phew! It's taken a long time, not to mention more than a few frazzled nerves on my part, to get this far and I am glad the gate is finally open, the ball is finally rolling.

Bob with Zenith riding on his shoulder
But I must say I have been a basket of mixed emotions. Relief, for one, that this attorney is on top of things.
Proud, of myself, for not giving up when prospects looked grim. Excited at the prospect of a settlement and having some light at the end of this dark tunnel and the possibility of being able to get Bob the help/therapy that he needs... But more than a little angry that this ever had to happen, when it could have so easily been averted. And, alas, very saddened by the whole thing.  What I wouldn't give to just hit the "undo" button.

I was asked by the attorney's office to gather together some photographs of Bob, both pre-stroke and post-stroke, and that has been a gut-wrenching task, to say the least. Some of the pre-stroke photos are just so hard for me to look at without bursting into tears. Like the one above...

Monday, December 10, 2012

Bob Speaks Out: A Video, Part 3

I haven't posted a video of Bob speaking in quite awhile as I had problems with my camera, but finally,  here is a video I took yesterday: (Click on the YouTube icon if you have technical difficulties with the videos. This will take you right to YouTube for better sound and picture quality.)


Compare to this one, taken 9 months ago:

Improvements all around, I think. Not to mention---man, did his hair grow! ha!

Since around June, when the last "professional" Speech Therapist bailed out, we have not had the time to do any "traditional" speech therapy. We used to do about 45 minutes each day, but since Bob developed his neck issues, we spend that time now doing neck stretching exercises and PT...  Instead, I have been implementing Mark Ittleman's "Teaching of Talking" techniques, which is basically pushing Bob to speak in complete sentences all day long. A sort of slipping speech therapy in sideways, if you will.

All I can say, it seems to be working.

Meanwhile, still no word if he will be able to continue at Rehab...... aargh.

Friday, December 7, 2012

Wouldn't It Be Lovely...?

Yesterday, Bob and I met with a rehabilitation consultant. This fellow was flown in from Miami by our attorney and the meeting was held at Bob's bedside here at The Pink House.

I was told that the purpose of the meeting was to prepare a "life plan assessment" for Bob, i.e. what Bob would require for life-long care. I was under the impression that the rehab consultant would be doing a physical assessment, testing Bob's mobility etc., but it turned out to be just an hour and half long question & answer interview.

The consultant explained that a medical malpractice suit is broken down into two parts. The first part is to prove that negligence occurred and that negligence indeed caused damage to the patient. The second part is the settlement which includes such things as "pain and suffering", medical expenses, loss of income and quality of life issues. And he was here to determine the medical expenses and quality of life part of that second part. From our interview, he is to write a 45-50 page report, a sort of life-long care plan for Bob. His report will then be given to an economist who will put a dollar amount on the whole shebang.

Count me as a bit naive, but I figured "medical expenses" would entail such things as the cost of Depends, prescription and doctor co-pays, and the cost of taking the wheelchair transport, etc. Things we pay out-of-pocket for now. Imagine my surprise when he came up with a list that included the following:

a wheelchair lift van of our own
a power wheelchair with left hand controls
and a 24/7 live-in paid caregiver

When he mentioned the live-in caregiver, I said, where the heck do we put her? Because you know, The Pink House is a small, 2 bedroom bungalow and we are really crammed for space...

and that's when he said, he is also listing a bigger, single story, wheelchair accessible house with all the wheelchair accommodations such a wheelchair accessible bathroom...

then he went on, to add such things as:

at least twice a week, ongoing, year-round physical therapy
specialized intensive aphasia therapy programs (there is a "good one" he said in Illinois)
adaptive computer equipment and aphasia computer programs to help with speaking
cognitive therapy
music therapy
art therapy

and I can't even remember what else he said, because I was pretty flabbergasted over the whole thing.

Of course, I know, right now this is all a pipe dream. A sort of wish list to present to a jury, if and when we get that far--and who knows what will happen. The attorney warned me these things can take years and years before they are settled. And the attorney is still lining things up, getting our ducks in a row, doing the pre-investigation and hasn't even filed the lawsuit yet.

But right now, all I can think is----  Wouldn't it be lovely? Oh my.

Meanwhile, still no word if Bob can continue his therapy at Rehab... and thank you for all the comments on Bob's drawing. He really got a kick out of it! If you haven't already left one for him, please do!

Tuesday, December 4, 2012

Privileges Revoked

Yesterday, I called Outpatient Rehab to find out if the paperwork had been cleared for Bob to continue therapy and was told that his "privileges were revoked" by the financial aid office.

This is not because of anything Bob or I have done. This is because the hospital is fighting with United Health Care over unpaid claims and thus, all United Health Care enrollees are having their "privilege" to financial aid revoked.

Today, an appeal is going to the Chief Financial Officer in charge of the financial aid program to see if he/she will grant an exception for Bob.

All I can say is good grief. And I can't believe it. And here is just one more reason this country needs a universal health care system.

Sunday, December 2, 2012

A River of Vodka, A River of Tears

Here's Bob's latest drawing which he calls: "A River of Vodka"

(click to enlarge)
He has been working on this one since summer and today pronounced it "done" but I could tell something was not right, so I asked him, "What's wrong?" At which point, he pointed to the drawing and announced, "Sucks!"

When I told him that I did not think this drawing "sucked", that in fact, it was darn good for someone who was formerly right-handed and now drawing with his left hand, and I loved the title and thought the drawing was pretty cool, he just rolled his eyes.

So I guess he's not happy with this drawing. But it's good know his artistic "inner critic" is still alive and kicking.

Bob usually spends his mornings drawing, but this past week he has been dealing with bouts of depression. Some mornings I find him crying a river of tears, when I ask him what's wrong, he says, "I'm sad" and when I ask him why, he just points to his paralyzed arm, leg and mouth and says, "Gone." I have been worried about him. And of course, his mood deeply affects mine (see my previous rather pathetic post, ha!). And yes, he is taking medication.... and I don't know what else to do.

I do hope it's just a passing phase. We have been dealt some blows lately. The dismal swallow test, for one. Plus this past week, Rehab cancelled both of his appointments because of a paperwork problem, which I hope will be cleared up soon and pray that this does not mean there is a problem with his financial aid. I do know that Bob loves going to Rehab and it's been a big disappointment for him not to go this week.

Meanwhile, if anyone out there thinks this new drawing doesn't "suck", I'm sure Bob would be cheered to hear that! Leave a comment and I'll pass it along.