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Sunday, April 26, 2015

Epic Fail!

Some events are hard to put in to words and some posts are very difficult for me to relive as I tell our story.  Please be patient as I struggle to spare you some of the grizzly details and my very raw emotions.

For those of you just tuning in and wondering what I am rambling about, I hope you will read my earlier posts and catch up with our story......sometimes truth really is stranger than fiction!
For those of you who have been along for the whole wild ride, thanks for hanging with me!
I would very much appreciate your thoughts and helps to know someone is out there!



It had been just over a day and a half since mom had undergone a major surgery inserting a longer, stronger rod in to her leg after the previous one had broke through her femur during her stay at a Skilled Nursing Facility for rehab – talk about an epic fail!

“How is she doing this morning”? I smiled at the nurse who had just stepped out of moms’ room as I approached.  Although I wasn't particularly surprised by the nurses response, I was a little panicked and completely unprepared.

The panic stemmed from realizing how little control I had over the current situation.  As a dedicated Control Enthusiast, being out of control turns me into a full fledged control freak!  My mind shifts in to overdrive and conjures up every “what if” scenario that “might” ever come up, along with every possible solution; my anxiety level sky rockets and I literally have to remind myself to breathe; my face feels hot as my blood pressure rises and sometimes I swear there is a whole band pounding in my chest.  Being unprepared only magnified my current state of panic.

My lack of preparation was not due to lack of trying, it was more due to lack of time and resources…..oh, and all those pesky emotions that get in the way of any form of clear thinking.

Honestly, I had attempted to prepare since the moment I knew mom was going to have yet another surgery.  I had attempted to prepare for it prior to each of the previous surgeries/procedures/tests/hospitalizations over the past nearly year and a half; 542 days to be exact.  Again, epic fail!

It turns out the world of Senior Healthcare and Medicare is kind of like a horrible rendition of Ground Hog Day, you have to relive the horror and the panic again and again and again.

I don’t know why I had let myself hope that this time would be different; maybe this time mom would be kept in the hospital at least as long as the surgeon had indicated she should be; maybe this time I would have more than a few hours to make a decision; maybe this time the powers that be would act in favor of the patients well being, rather than their “bottom line”.

At least I had only hoped it and not actually believed it; I knew it would be the same this time as it had been all the other times.  I knew the nightmare was getting ready to start again.

The nurse didn't really tell me how mom was, only that she would “probably be discharged sometime late afternoon”, they would “call for transport” back to the SNF as soon as the orders were signed.  WAIT!  WHAT? HUH?!!

“She’s NOT going back THERE!” I felt the tears stinging my eyes.  My voice squeaked through the lump in my throat, “They can’t discharge her this afternoon”.  I found myself pleading with this nurse to do something and demanding the surgeon be notified; obviously I wasn't the first person who had ever been mortified and overwhelmed with the healthcare system.  I probably wasn't even the only person who had ever voiced my frustrations vehemently to a nurse.

I know nurses are the “front line”, so to speak, and it really isn't the nurses’ call, she’s just the messenger.  In the heat of things, with emotions running high, it’s really hard to remember not to stone the messenger.

I also now know that a patient’s discharge date (due to the payment structure of Medicare) has much less to do with how the patient is really doing than with whatever condition/diagnosis the patient was admitted for in the first place.  The longer she stays, the less money they make; the sooner they get mom out, the more money they make.  In my mind, this puts a whole new spin on "survival of the fittest".

The facility will receive lump sum payment based solely on the “normal length of stay” for the procedure/diagnosis, without taking into account any extenuating circumstances or mitigating factors.  This means none of moms other afflictions are taken in to consideration when determining the length of stay she is entitled to or “should need”.  According to the payment structure, mom should need no more time to recuperate at 77 with a number of other severe health issues than a 40 year old, otherwise healthy person, would need for the same procedure.

I knew mom was not ready for discharge; she needed better care than would be provided in a SNF (as had clearly been demonstrated) and certainly more care than I could possibly provide for her in a hotel room for the night.  The 5+ hour drive home alone, with mom still requiring a 2 person assist to transfer, was way too risky in her current condition even if we started at noon; “late afternoon” was out of the question.

Before I caused too much of a scene, and before I went in to see mom, I returned to my car to just sit and think for a few minutes. OK, what I really did was roll up my car windows and scream; cry; beat on my steering wheel.  Although she had been a little crass, the nurse was right, I needed to calm down.  I had to figure something out.  I had to buy some time.

Deciding my only recourse was to file a Medicare appeal as soon as they tried to discharge mom, which would likely only buy us a day or two, I dried my eyes and headed back to moms’ room.  The appeal would at least give me time to pay a surprise visit to some of the other SNF’s in the area and at least try to make a good decision.

I took a deep breath as I stepped off the elevator and reminded myself to stay calm.  I was feeling pretty confident that I could now talk to mom without crying.  At least I had a short term plan; true, I didn't know exactly how to implement it, but I knew an appeal could be filed which would make them keep her while it was in review.  I detoured by the bathroom on my way and as I exited, I heard a friendly, familiar voice, “What are you doing here?”  The look on her face said “I hope nothing more has happened to mom”.

I tried not to cry as I explained to this nurse, who had become a friend during moms previous stays, how the rod had broke through the femur while she was in rehab at the SNF.  Remember, I said “I tried” not to cry - another epic fail.  I was sobbing as I told the nurse what had happened and what was going on now.  The nurse hugged me tight and asked, “Why can’t she come over 
here?”, referring to the sub-acute rehab unit.

I sobbed even harder when I told her that’s what I had hoped, but was told by a nurse the night before that there was no availability.  “Well, we don’t have anything today, but we will in a day or two” the confirmation there wasn't anything available “today” didn't console me.  “But they are planning on discharging her today” I wailed.

Once again, I returned to my car to try to get hold of myself before seeing mom.  It was 11:00AM and I knew she was going to be wondering where I was, but I really didn't want mom to see me this upset.  Moms’ blood pressure was pretty sensitive to any problems with any of us kids, the last thing I wanted to do was cause her any more stress.  

My phone rang with the familiar ring I have assigned to my mother just as I got in my car.  “Hi mom, I’m on my way” I tried to sound upbeat as I answered, “I’ll be there in a few minutes”.  I suggested mom order her lunch and I would be there in time to help her so she didn't have to wait for someone to open the containers.  I sat there for a few more minutes just thinking.

I had jumped to a lot of conclusions before I had even gone on in to see her; mom sounded pretty good, maybe she was ready to be discharged.    Maybe I've suffered all this angst for nothing.  Maybe I should try to think a little more positively.  “I’ll just tell mom I didn't sleep well” I thought to myself as I looked at my puffy eyes in the mirror and headed back in again.

“Hi”, I smiled as brightly as I could at my mom, “I hear they might spring you today”.  The slight smile she offered as I entered, quickly faded.  “When?”, mom wanted to know.  I told her it sounded like possibly that afternoon and I watched the same emotions cross my mother’s face as I had felt upon hearing of the pending discharge, she also knew it was too soon for her to go home.  “Will I have to go back?” mom asked, referring to the SNF where her leg had been broke.  "Not if I can help it" I assured her I would figure something out.

Feeling I had armed mom with enough information about the plan to file an appeal
that she would not sign anything regarding discharge until I returned, I left the hospital in search of some place mom would be safe and well cared for until it was safe to make the trip home.  I was praying such a place existed.

Does such a place exist?  All my research; surprise visits; and moms' recent debacles at two different "top rated" facilities indicates to me that such a place does not exist.  In my opinion, the options available for senior rehabilitation and the rules & regulations (or lack thereof) that govern Senior Health Facilities are absolutely EPIC FAILS, as was my attempt to find adequate placement for mom.

Feeling completely defeated, utterly exhausted, and very emotional, I sat in my car in the parking lot of the fourth facility I had visited that afternoon crying and wondering what to do next.  I toyed with the idea of finding out exactly what they would do about moms' discharge if I simply didn't show up to pick her up, but quickly dismissed the idea because I wasn't sure I wanted to find out.  The outcome could be a serious epic fail!

Knowing the appeal was going to be my only option, I returned to the hospital and sat with mom as we waited for the nurse to arrive with moms' discharge papers.........we waited and waited and waited some more.

It was nearly 6:00PM when the nurse I had encountered earlier came in with moms' meds.  I had dug the paperwork out that instructed me on how to file the appeal on early discharge and was ready to pounce when the nurse, very sweetly, asked mom, "Do you need help ordering dinner tonight?" and then to me, "Or, will you be here to help her?"  I assured the nurse I would be there as I shoved the papers back in my pocket; no sense reminding her that mom was to be discharged, right?

By 8:00PM, I decided it was late enough that a discharge was unlikely that late. Feeling it was safe to leave mom for the night, I returned to my hotel.  I figured I better try to get some rest so I would be ready for battle in the morning; the reprieve was bound to be short lived, wouldn't you think?