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 comments.....it helps to know someone is out there!

2013

EPIC FAIL!

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.

http://www.medicare.gov/claims-and-appeals/right-to-fast-appeal/hospital/fast-appeals-in-hospitals.html

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?

I didn't know.......

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 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.

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 comments.....it helps to know someone is out there!

I didn't know........

 Do you ever watch those TV shows where they have actors play out an injustice and capture the responses of unsuspecting bystanders?  I love those shows, but they always make my blood pressure rise and my heart palpitate watching the injustice play out.  Even though I know it’s JUST a show, it makes me angry when people are not treated fairly and even angrier when the bystanders are taking a “let’s not get involved” position.  How can anyone justify just sitting or standing there when someone is beating his wife; discriminating against anyone; stealing; harassing; or anything that would inflict pain (of any kind) on another person?

While I do love those shows, I also hate them.  I hate that we live in a world that people are selfish; unkind; hateful; and just downright mean.  I hate that we have tolerated this horrible behavior for so long that there even IS a show about it.  But, every once in a while, my faith in mankind is restored when someone intervenes and stands up for what’s right, regardless of the consequences.

So, with my propensity for decency and fairness, you might find it odd that the following scenario made me laugh until my sides hurt.  Picture this:

On the evening of August 31, 2013, two ladies, obviously related, are making their way to the front entrance of the hospital where my mother was recuperating from surgery.  The younger of the two is struggling and begging for help, as she manually propels her wheelchair across the sloping parking lot; she was clearly struggling to steer in the right direction.  Although there were many onlookers, only one gentleman offered his assistance to the young lady while shooting a very disgusted look at the older woman walking ahead and seemingly ignoring the desperate cries for help from this poor girl in the wheelchair.  The young woman politely declined his assistance and told him that her “sister” was right ahead of her and could help.  The gentleman stood looking outraged and expectant as the older sister walked on without even a glance back; he continued to watch as the younger sister continued to struggle and cry out for her sisters’ help.  I can only assume, given the opportunity, that this gallant gentleman would have helped the young lady to whatever her destination was without regard to his own scheduled needs.  God bless him!  The world needs more people like him.  I didn't personally witness this scenario, but I heard about it.

The commotion down the hall from my mother’s hospital room was hard not to hear; stern scolding followed by hearty laughter echoed through the hall.  I looked toward the nurses that were helping my mother out of bed just hours after major surgery; they looked at each other.  I think we were all wondering the same thing, “What is going on out there”?  Curiosity got the best of me and I stepped out in to the hallway; the stern voice and laughter were getting closer and sounded like they were coming from the next hallway.  I had a fleeting thought of being a super detective (an Agent 99 kind of detective, but still) I looked both directions before slowly making my way toward the corner; they might not come this way and by now I was too curious to not find out what was going on.

I was almost to the corner when the voice grew louder and I began to quickly retreat; I didn't want them to catch me “trying” to spy on them.  “I can’t believe you did that to me”, followed by hysterical laughter wafting down the hall.  WAIT!  I recognized the voice and the laughter and turned back around just in time to see “the sisters” from the parking lot incident with the older sister walking briskly in front and the younger sister trying to keep up; the wheelchair was clearly out of alignment and kept banging her in to the wall.

Those “sisters” were MINE! The wheelchair was my mother’s that they were delivering to her room……….that poor man in the parking lot had just been punked!  Mom made an attempt to act mortified that her daughters would do such a thing; she failed……….she couldn't help but laugh.  And, like I said, I laughed so hard my sides ached and tears streamed down my face as I conjured up the mental image of the story they told.  I didn't know how long it had been since I had laughed that hard; and wondered absently how long it would be before I would again.  I didn't know why, regardless of the silliness or absurdity, my siblings always made me laugh.

What I did know was that my brother would be leaving right after he tried to fix the wheelchair alignment and help me sort six weeks of news papers in order to retrieve and date order puzzles for mom; my sisters would be returning to their homes and lives the following day.  I did know that I would miss the comic relief as much as I would miss the brief respite I got from the caregiver role when they were able to be there to fill in.  It seems                                       like I didn't know much.

I didn't know how long it would be before I was able to make the five hour journey to take mom home; I didn't know when they were going to attempt to put a joint back in moms knee; I didn't know if they would ever be able to completely rid the infections that were continually attacking my mother; I didn't know when (or if) I would ever return to my home; I didn't know if mom would be able to continue to live in her home (with my assistance) when/if I did get her home.  I just didn't know.

I also didn't know how dark the days ahead would become, or how many times I would need to revisit the images of my sisters and the wheelchair shenanigans so I could muster a smile when all I wanted to do was cry.  I didn't know how many times I would need to draw on those fond memories of my siblings in order to keep my sanity as I weathered the storms to come.

At that point, I didn't know a lot more than I did know..................I just didn't know.

The silliness began

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 my very raw emotions.

Many posts are written (and re-written) several times as I attempt to capture the meat of the story and leave some of the seasoning behind!

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.

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 comments.....it helps to know someone is out there!

The silliness began

Let’s face it, there’s not a lot of entertainment to be found hanging around a hospital……..unless you happen to be a member of my family!  With mom safely in her bed on the orthopedics ward after her surgery on August 30, 2013 and flying high from the dilaudid pain pump she was gripping with all her strength, the silliness began.

My younger sister held a spoon like a microphone and asked mom “Is there anything you would like to share with us?”  As we all giggled, mom spoke poignantly into the makeshift microphone, “I just want to thank you all for being here……I was so afraid…..I just love you all!”  Mom was so serious that we couldn't resist having some fun.

It’s a wonder we didn't get kicked out of the hospital as we roared with laughter while mom entertained us.  “A tutor who tooted the flute tried to tutor two tutors to toot; said the two to the tutor is it harder to toot or to tutor two tutors to toot?” Mom was actually remarkably good at tongue twisters even when she was stoned out of her mind following surgery!

“Sally sells sea shells……….” “There once was a lady from Niger……..” “Rubber baby buggy bumpers…….” “Peter Piper picked a peck of pickled peppers…..”

Suddenly mom opened her eyes wide and looked very serious and started talking about the rabbits around the hotel; the dog at home; and the mule in the closet……….. (For those of you who haven’t followed our story, that mule caused a lot of ruckus and cost me an entire nights sleep nearly a year before).  The mule, who was “darker colored than the dog, but lighter than the bunnies” according to mom, had resided in my mother’s bedroom closet since nearly a year before when she had suffered from horribly vivid hallucinations following a nasty reaction from Gabapentin.  That mule had seemed so real to her; she said                                                                            

she would “still recognize that mule”.

Moms eyes fluttered with another beep from the pain pump clutched tightly in her hand.  “Have you talked to Luke?” mom asked me and then continued, “I hope he doesn't crap in the closet”; I was laughing so hard I had tears rolling down my cheeks when mom (very seriously) clarified, “Not Luke, the mule”.

I tried to quit laughing when I asked if she wanted me to call my son, Luke, and have him put the mule in the garden.  Mom’s eyes fluttered closed as she smiled sweetly and said, “Yes, put him in the garden – that’s a good place for him”.  A moment later her eyes flew open and she said, “NO! Don’t call him!  He’ll think I want one and he’ll get me a mule! .......I don’t REALLY want one!”  Luke has always told grandma he would do “anything” for her……….

The silliness continued until we were saying our “goodbyes” and preparing to leave for a while so mom could get some rest.  Once again mom grew very serious and thanked us all profusely for being there; her articulation and poise (at least in her current state) rivaled that of an off the cuff Academy Award acceptance speech as she thanked God; her family; and her surgeon.  With tears in her eyes, mom said “I really didn't think they were going to be able to save it – I’m so glad they did”.

I have to admit, I also hadn't been sure they were going to be able to save moms’ leg.  I also still wasn't sure it was going to be functional and I wasn't ready to tell mom that the surgeon had termed the leg as a “salvage” limb.  I felt the tears stinging my eyes as I kissed my mother and said through the lump in my throat, “I’m glad too, mom.  I love you”.

Tomorrow would be soon enough to have a serious conversation about how useful (or not) her leg was going to be.  I wanted to be optimistic, and I was indeed cautiously optimistic.  The fact that mom had a leg was a miracle in and of itself; actually, the fact that she was alive was a miracle too.  I was afraid to push my luck and pray (or even hope) for too much.

I needed to push the “what if’s” out of my mind for now; I needed to distract my mind.  A good comedy would probably be a good distraction – or an afternoon/evening with my siblings and my aunt, which is pretty much the same thing.

I’m pretty certain if any one of us were half as funny as we seem to think we are when we get together, at least one of us would have our own comedy show.  Of course, one does have to wear a little armor when bantering with ones siblings; you have to be quick with the come backs and ready to take some heat.  None of us were immune from the stories of our childhood, teenage or even some of our adult escapades; each of us stood ready with the next story in order to deflect the attention from ourselves.

As tears rolled down my cheeks and I my sides ached from laughing I realized, even with the sacrifices made in order to make sure mom was cared for, The Lord had truly blessed me in so many ways.

I had a husband who had shown incredible love, patience and support (moral, emotional and financial).

I had three wonderful adult children who had been incredibly understanding and supportive.

My world was even brighter when I looked at my two beautiful grand children and thought of the third one on the way made me giddy.

Sharing memories (while making new ones) with my siblings is a wonderful gift that I will always cherish.

Add to all that, the incredibly heartwarming experience of really getting to know my mother and having her share so many of her memories; so much of herself with me over the past couple of years……..yes, I truly was blessed.

Lord, please help me remember tomorrow how blessed I feel today.