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Tuesday, July 29, 2014

It was real bad!

Some events are harder to put in to words.........some posts (including this one) are very difficult for me to relive as I tell our story.  Please be patient with me as I struggle to spare you some of my very raw emotions on this subject.  This particular post has been written (and re-written) several times as I attempt to capture the meat of the story and leave some of the seasoning behind!
Thanks for hanging with me!  I would very much appreciate your comments/ helps to know someone is out there!

It was real bad!

Although the week had been pretty stressful, I felt confident I had everything in order to take mom home by Saturday (I was hoping for Friday).  Although I was sure there would be new challenges, I was determined to get mom out of the Skilled Nursing Facility as soon as possible; I was afraid they would break her.  Besides not ever having enough staff to adequately care for the number of residents there were, the inconsistencies in care; staff attitudes; management’s greed; and the continual push to keep mom as long as Medicare would allow, gave me the creeps.  “Just a few more days”, I kept reminding myself it wasn't so bad.

By Wednesday afternoon, August 21, 2013, with the exception of the follow up with moms’ surgeon, we had completed the marathon of appointments required before we could make the five hour trip home.  Between my sister; brother; daughter; and my daughters’ friend, I had already sent four full loads of stuff home and I still wasn't sure I could fit what was left in the car.  Don’t laugh!  We had been away from home for six weeks!  Besides, we had arrived in an SUV and were returning (with more equipment) in a sedan!

By Thursday afternoon, after dropping off a few boxes at my older daughters, I was positive I could fit everything else in the car; OK, I was fairly certain of it.  I had left just enough in moms room at the SNF to get her by until we left; the rest was boxed and waiting in the car.  The plan was to pick mom (and the last of the stuff from her room) and head for home immediately after her follow up appointment with the surgeon.  Of course, “the plan” had been contingent on the MID-line, which had been used to deliver moms’ antibiotics, being removed after her last dose on Thursday afternoon; then she would start on three different oral antibiotics.

When I arrived at the SNF just before 5:00pm, the final antibiotic dose (that was supposed to be started just after noon) was just finishing.  The nurse was removing the bulb from the IV line as she apologized for being late and complained about how much she had to do and how understaffed they were.  I assured her it wasn't a problem since it was the last dose; the nurse smiled and thanked me for my understanding.  We had a pleasant conversation right up until I asked, “Are you going to take the mid-line out, or will the charge nurse do that”?  The nurse looked like a deer in the headlights; she didn't know, but would go right then and find out.  Uh-oh!

Realizing mom was going to miss dinner if I didn't get her to the dining room soon; I wheeled her down the hall and parked her at her “usual” table.  “I’ll be back soon”, I told mom before going to look for the nurse.  It had been nearly 45 minutes since she told me she was going to find out about removing the line; I was sure there was a problem and needed to find out sooner than later what it was.  I sure wish it had been sooner!

“I’m sorry, we don’t have an order from our doctor to remove the line” the nurse explained they couldn't
accept the order that had been faxed from the Infectious Disease doctor (who had ordered the antibiotics in the first place).  Of course, I wanted to know why; it was policy.  OK, this shouldn't be an issue, right?  “So, we just have to wait until the doctor signs the order in the morning, right?” I could tell from her face I wasn't going to like the answer.  My mouth went dry and it seemed like time stood still when the nurse said, “The doctor won’t be in until Tuesday or Wednesday”.  I turned so quickly to face her that I wrenched my neck; I couldn't believe the implications of what I was hearing.

“We are leaving tomorrow” I realized I was gritting my teeth and clenching my fists; I tried to calm down before I spoke again, “Will you please page the doctor”?  After insisting the doctor was not reachable, the nurse tried to placate me when she said, “I’m pretty sure the PA will be in sometime tomorrow afternoon”.  I have to tell you that “pretty sure” and “sometime tomorrow afternoon” did NOT placate me.

“What is wrong with you people?” I was nearly screaming, “You've known ever since mom got here that we
were planning on leaving as soon as we could after her appointment tomorrow”.  I had the nurse backed in to a corner (literally) and spent the next several minutes making sure she knew just exactly how unhappy I was; how long we had been away from home; how horribly homesick I was; how incompetent I thought they were; how sorry I was that I had brought mom here; how mad I was going to be if they delayed our return home; and on and on.  Yeah, I know it’s probably not this particular nurses’ fault, but I was pretty much in a “stone the messenger” mode; somebody had dropped the ball and I expected somebody to pick it back up.

I was just about to share some more of my feelings about the facility when I noticed the daughter of the man across the hall from mom looking very concerned; remembering her story of what she (and her father) had experienced and the horror they were facing now made my blood run cold.  I quit talking and backed away from the nurse while mumbling an apology to her.  It wasn't that I felt like I owed an apology or that I didn't still believe all the things I had said; I was scared.

PS: It's ALL in God's control!

I was too shook up to talk to mom right then, so I went out to my car and cried for the next half hour as I replayed the conversation that I had with the young lady whose father I had witnessed being, in my opinion, disrespected and borderline mistreated.  The fear and mistrust in the daughters’ eyes and the terror she was now experiencing truly frightened me.  What if I had gone too far?  What if they called the police and/or convinced a judge that I was “not fit” to care for mom?  What would happen then?  Could I be in the same position this girl was in because of false allegations?  Would the state step in and assume guardianship of mom?  Would they over medicate mom to make her more compliant?  Geez, I really needed to get a grip.

An hour and a half later, after helping mom get ready for bed, I went back to my hotel room to finish packing my stuff; I was still determined to leave as soon as we could after moms’ appointment.  My plan was to have everything in the car before picking mom up the following morning; if I could figure out how to get someone to remove the MID-line; we could still be home by evening.  Figuring my only hope of getting the line removed was to get in touch with the Infectious Disease doctor, I shot off an email before I went to bed.  I really needed to try to get some sleep; try was the operative here.

I couldn't get the image of that young ladies terror out of my mind; I couldn't quit thinking about the SNAFU with the MID-line; I couldn't quit visually packing the last of the stuff in the car; I just couldn't sleep.  By 4:00am, I gave up trying to sleep and spent the next few hours researching random stuff on the internet; I wondered how many others had suffered the same fate as the terrified girl I had met at the SNF; how many people were kept in facilities against their will; how likely it was that mom would beat the horrible infection raging through her body; I wondered so many things.

When my phone rang at 8:00am, I wondered who was calling from an “unknown” number; the possibilities scared me.  “Hello, this is Brenda” I answered tentatively and was startled when I heard the voice of moms’ surgeon who we were scheduled to see in just a few hours.  His voice was kind, as always, when he said, “Hi, I hope I caught you in time”.  I only had a second to wonder what he was “in time” for, when he continued, “As long as your mom is doing well, I don’t think you need to drive over the mountains today.  We can just see her in a few weeks for the biopsy.  They’re doing some work and someone cut a power line at the clinic”.

How had he not known we had stayed in town; that mom was at the SNF?  I was in tears as I explained we had stayed in town to complete the IV antibiotics and see him before we went on home by the following day.  It only took a minute or two for the surgeon to offer me another option, “I’m sorry, I didn't know you were still in town.  I can see her at the main hospital if you think she needs to be seen”.  I did.

Deciding that seeing the surgeon at the hospital would facilitate us being able to stop by the infectious disease office to see if I could convince them to pull the line out of moms’ arm, I was not unhappy about the change of locations; still, I couldn't shake the feeling that something was going to go wrong.  Since I was just driving myself crazy trying so hard to get home that day, I changed the plan.

Before leaving for the SNF to gather mom, I stopped by the front desk of the hotel and extended my stay for one more night and prayed it wouldn't be a problem to extend moms’ stay at the SNF also.  It just seemed like a good idea to maybe not push quite so hard; one more day wasn't going to hurt.  Of course, the coordinator at the Skilled Nursing Facility was happy to honor my request as she reminded me that mom still “had plenty of days left” (referring to her Medicare coverage) and they would be “happy to have her” and that I really should consider just keeping her here “until her next surgery”.  I thanked the coordinator and reminded her that mom would need some of those days AFTER her next surgery which, by the way, we still didn't know when that would be.

Since I now didn't have to load the car with the remainder of moms’ stuff right then, I had some time to sneak in and quietly observe mom in her therapy session.  I was almost to the wing leading to the therapy department when my mother appeared at the other end of the hall; she was walking as normally as one could expect while keeping one leg straight and seemed to be doing it with ease.  “Hi!” the therapist saw me before mom did.  “You’re mom is doing awesome” the therapist was obviously impressed.  A few minutes later mom impressed us both as we watched her descent in to the passenger seat of the car with relative ease.

A half hour later, with a glowing letter from the therapist in hand, I wheeled mom in to the main hospital and
up the elevator to see the surgeon.  Since we were a little early, I decided to take a chance at catching the infectious disease doctor and hopefully figuring something out about the MID-line; the doctor was not in that day.  “Well, we may have to stay until Monday” I said to mom as I headed back toward the elevators.  “Mrs. Adams?” I heard someone calling from behind us; it was a nurse from the ID doctors’ office.  Evidently, the doctor had checked her email and called in to tell her staff to help us with the MID-line; five minutes later there was only a bandage where the line had been.  Another five minutes and I was helping mom on to an X-ray table on the orthopedic floor before seeing the surgeon.

I hadn't seen my mother’s leg since the last time she had showered at the SNF, so I stepped up to the table to get a peek as they removed the brace.  OH MY GOD; I stifled a gasp.  As we waited in the exam room for the surgeon, I convinced myself I didn't need to worry; the surgeon had told us the knee would never look “right”.  Trying to focus on anything but moms’ knee, I was happy to join mom in her conversation about the first thing she planned to do when we got home.  “It’s probably a good thing we decided to wait until tomorrow to leave since it’s getting so late” mom said just as the door opened and the surgeon greeted us with his pleasant smile.  I handed the surgeon the letter from the therapist saying how well mom was doing; she had walked 175 steps that morning; they hoped to work with her again after the new knee was in; etc.

The surgeons’ smile faded almost immediately when he looked at moms’ knee; he dropped his head in to his hands when he pulled up the X-Ray.  “Excuse me just a minute” the surgeon abruptly left the room, leaving us wondering how bad things really were.  While we waited I sat and stared at the X-ray that was left up on the screen.  I was no doctor, but I could tell what I was seeing wasn't a good thing; in fact, if I was seeing what I thought I was seeing, it was bad.  It was real bad and things were quickly going from bad to worse.  “I’m so sorry” the surgeon said when he returned, “I know you were planning on going home today, but we’re going to have to take you back to the OR and I can’t get you in until next Friday”.

I told you it was REAL BAD!

Monday, July 28, 2014

Maybe focused isn't the right word......

Some events are harder to put in to words.........some posts (including this one as well as the next several) are very difficult for me to relive as I tell our story.  Please be patient with me as I struggle to spare you some of my very raw emotions on this subject.  This particular post has been written (and re-written) several times as I attempt to capture the meat of the story and leave some of the seasoning behind!
Thanks for hanging with me!  I would very much appreciate your comments/ helps to know you're out there!

Maybe focused isn't the right word......

I was so glad to see that mom was OK; I didn't even question the need for the brace extension; moms’ refusal to take the brace off at night; or even her flimsy reasons for opting for a bed bath and shampoo cap rather than a hot shower.

I was so pleased mom was doing so well in therapy that I accepted the increased activity level as the reason for her elevated pain and need for more pain medication.

I was so focused on taking mom home the following weekend; coordinating the various appointments before then; and figuring out transportation for the five hour trip home, that I accepted moms’ silence as mild depression.  After all, as the therapist had pointed out when I mentioned it, who wouldn't be depressed after all she had been through?  Maybe “focused” isn't the right word for what I was.

Overwhelmed?  Exhausted?  Terrified?  Anxious?  Irritated?  I was all of those things.  But, looking back, I think maybe I was also in denial.  I wanted so badly to believe mom was getting better; that we would be home by this time next week, that I didn't pay attention to the alarms sounding in my head or the pit in my stomach.  Instead, I trudged forward; I set my sights on getting home.

After a failed attempt at transferring mom in to her own car, my daughter and I set out in search of a vehicle that would work.  We found it very amusing to watch the confusion on the salesman’s face when we told them what we were looking for and giggled at his attempt to be helpful; it was obvious our request was not one they learned how to handle in any training class they may have ever taken.  Since it was quite apparent that the salesman had absolutely no idea which make/model of vehicle might accommodate a 5’5” woman into the passenger side without bending her right leg, he turned us loose to investigate on our own.

It’s actually surprising how few vehicles could accommodate our needs, but after an hour or so of attempting a straight leg descent into several dozen cars, we narrowed it down to two (at least the only 2 that were remotely in our price range); the Ford Taurus Limited or the Chevy Impala.  Once we knew what vehicle we were looking for we wandered through a few more lots before returning to the Skilled Nursing Facility to tell mom what we had found.

At 10:00am on Monday morning, August 19, 2013, mom and I met the therapist and two car salesmen in front of the facility to attempt another car transfer.  Once again, without much difficulty, mom pulled herself out of the wheelchair up on the platform walker and shifted herself around and sat herself down in to the passenger seat.  Sliding her butt as far back as possible, mom swung her left leg in to the car.  So far, so good.  I reminded myself that we had gotten this far in to moms Nissan before realizing we lacked less than an inch of getting the right leg in.  It was looking like we were going to have the same problem with the Taurus until I remembered the electric controls and the tilting seat.  Bingo!

Mom was in the car, grinning from ear to ear, when she said to the therapist, “Just throw my chair & walker in the back, I’ll send for my clothes”!  I didn't really care, but I was sure moms’ excitement in front of the salesmen was not helping my negotiating position.  It didn't matter though, I was just thrilled that we had finally figured a way to get mom home by Saturday afternoon; we had been gone from home six weeks, it was time.

The following morning, once mom was settled in to the passenger seat of her new car, I struggled until I figured out a way to fit both the walker and the wheelchair in to the car (I hadn't thought about that!).  “Is it going to fit” I heard my mother ask while I had my head and half of my body in the trunk.  “I’m sure it will” I answered as positively as I could; under my breath I said, “It has to, we just spent $27,000”.  After what seemed like forever in the trunk of a car on a hot August day, I finally managed to scoot the wheelchair in to position and secured the walker on top of it.  “Got it” I announced as I climbed behind the wheel and fastened my seat belt.

“I guess you must have got it” mom said as I shifted in to drive.  Hadn't she just heard me say “got it”?  Maybe she was just making conversation. “So, what do you think?” I asked mom, referring to the car; she didn't answer.  “I bet Jazz is going to be happy to see us” now I was just trying to make conversation.  “Friday” mom said, looking at me.  Huh?  When I reminded her that we were going to leave on Saturday since her appointment was so late in the day on Friday, mom said “I wonder if Jazz will be happy to see us”.  I was getting concerned and really confused; it was like my mother wasn't listening to anything I was saying.  Or, maybe it was something else.

“Can you hear me OK, mom?” I asked as I was helping her out of the car.  “I can now, but sometimes it’s like I have water in my left ear and I can’t hear anything” mom added that she had “told the nurses”, but they “didn't seem concerned”.  I think I might have had a little steam coming out of my ears as I recalled a conversation with one of the nurses who indicated mom might be “depressed” or possibly be displaying “behavior” issues because she was “ignoring” simple interactions and/or instructions.  I took a couple deep breaths to calm down before wheeling mom in for her baseline vision test.  The infectious disease doctor had ordered baseline vision and hearing tests due to the antibiotics mom had to take for the mycobacterium avium infection she was fighting.  I decided to worry about the eyes today and the ears tomorrow.  I could only handle so much in one day!

“Have you ever used Plaquenil for your Rheumatoid”? The ophthalmologist asked mom as he peered in to her eyes.  Since I had never heard of the drug, I was surprised when my mother said “yes, a long time ago; they took me off of it because of problems with my eyes”.  I don’t know why, but I suddenly felt like there was a lot I didn't know; I felt an urgent need to research the “long term” or lingering effects of Plaquenil.

My need to research took a backseat to moms need to spend just a little more time out.  After a little sightseeing and more fragmented conversation, we grabbed some junk food before returning to the facility; mom said she needed “another” pain pill.  When I asked about her seeming to be using more pain pills than she had been just a week ago, mom said “My leg has been hurting more the past few days, I think from walking so much in PT”; that seemed plausible, but something was still nagging at my gut.

After getting mom settled back in her room, I stopped at the nurses’ station to let them know mom was back as I wasn't sure anyone had noticed us come in and it was time for moms IV antibiotic.  “Does she want another pain pill?” the nurse asked after a brief conversation about our outing.  I told her I wasn't sure but that mom would tell her if she did.  Bells were going off in my head as I stepped in to the elevator.  “How many times had I heard “another pain pill” today?” I asked myself as the elevator door closed.


It wasn't that I was concerned about mom becoming addicted to narcotics; in my opinion, that was a non-issue.  I figured she was 77 years old; had severe RA (currently unmedicated); had recently undergone a major back surgery as well as the recent knee surgery, plus another on the horizon, so needing a few pain pills was certainly within reason.  What I was concerned about was the timing; I needed to find out when mom started asking for more narcotics.

It took a little bit of energy and a LOT of patience to nail down the answer to my questions, but from the information I was able to garner the correlation of my mother’s increased pain and use of narcotics had a direct correlation to the timing of her last shower.  I managed to shut down the anger that was starting to surface before going to talk to the director of nursing and the facility coordinator; I found both in a meeting together with the director of therapy.  Feeling like it was a stroke of luck to have all three in the same room (which would save me the time of looking for each of them individually); I wasted no time voicing my concerns.  I may as well as voiced those same concerns to the bunnies in the courtyard for all the good it did me.

The therapist attributed moms’ increase in pain to her awesome hard work in therapy; the director of nursing insisted that the therapist was right and there was no correlation between the “Ouch” from the aide at shower time and moms’ need for more narcotics; the facility coordinator didn't “have any reason to believe” there could be any more to it.  Of course, they all thanked me for my "help" with mom and encouraged me to not hesitate to come talk to them "if" there were any problems.  Right!

I left that afternoon aggravated and frustrated.  I reminded myself that mom only had to be in the facility another four nights before we could begin our journey home; I had been counting the days for weeks!  I was seriously contemplating making it only three more nights; we could leave the afternoon of August 22nd, following moms’ last dose of IV antibiotics and her follow up appointment with the knee surgeon.  That would give the SNF one less day to screw things up for us!

Decision made.  Barring any complications, we would be home by the evening/night of August 22, 2013 if there were any way possible.

Was there any way possible?

Wednesday, July 2, 2014

Something was seriously wrong

If you're "just tuning in" this post may leave you wondering what the heck I am rambling about, I hope you take the time to go back and review my earlier posts so you can catch up with our story.
For anyone who has been along for the whole wild ride - Thank you!

Something was seriously wrong

It took a lot of persuasion and a little coordination to arrange for me to
be able to help mom with her shower at the SNF, but I finally got it worked out with the therapy department and they agreed that since I would be the one responsible for showering mom at home that it only made sense that they should make sure that I was capable and mom was safe.  It wasn't like I hadn't helped mom with her showers for the past year and a half, but I had to admit that the rod holding her leg straight did put a new spin on things.

With each “procedure” mom had undergone since early 2012 came a new set of challenges; a required change in the way we did things.  Each change had been difficult at first and became easier as we developed a routine.  My feeling was that the presence of the rod would be no different than previous challenges; we would have to take it slow and easy until we were sure of ourselves.  Evidently the aide assigned to “observe” our showering techniques did not have time for “slow” and I’m not sure “easy” was in her vocabulary.

The aide sat in the chair fidgeting and sighing as I took my time getting mom ready to get in the shower.  Once I had her top off, I wheeled her in to the shower; positioning her at what I thought was an appropriate distance from the grab bar and asked mom “Are you ready for this”.

I felt clumsy and unsure of how best to help mom get to a standing
position safely; the presence of the aide should have been comforting, but it made me nervous.  I could feel the aides’ eyes boring in to me and hear the disapproval in her sighs.  After the first failed attempt at mom standing, I decided I needed to position her wheelchair at a different angle.

I always explain to mom what I am thinking when it comes to her care, but before I could even tell mom my thought process about how it might be easier for her to stand the aide stepped in behind her, put her forearms under moms’ arms and hoisted her to a standing position.  There wasn't time for mom to prepare or adjust for this movement.

“OUCH!” my mother winced in pain, “that hurt”.  I quickly stepped in
and stabled mom as the aide stepped away from her to scoot the shower chair in behind and just as quickly (and roughly) the aide set mom in to the chair as she said in a sarcastic tone, “It’s going to hurt, you just had major surgery and are just going to have to work through the pain”.

“You have no idea how much pain my mother has worked through” I was not happy and was starting to work myself in to a frenzy.  I talked myself off the ledge quickly when I looked at mom sitting naked on the hard seat of the shower chair waiting for the water to start.  I shifted my focus to the task at hand as the aide left the room to “take care of something”, only to return after the shower was done and I had mom dressed and back in her wheelchair.

An hour later, although mom felt better because she was clean and her hair was washed & styled, she was in obvious pain.  After making sure she was able to get the pain medicine she had asked for, I made sure mom had everything she needed for the afternoon before going to visit my grand babies and returning to my hotel room.  I was exhausted after the adrenaline quit surging through me; I needed a nap.

Napping is not something I do well, or often, but when I nap I REALLY nap.  I've never understood, but always envied people who could “power" or "cat" nap and feel refreshed.  No sir, not me.  I need HOURS of sleep before I even feel alive and I can’t say that I have felt “refreshed” since I became a full time care giver for mom.  I’m not sure how long I would have slept that afternoon if it hadn't been for the nightmare that invaded the sound sleep that had engulfed me within seconds of hitting the bed.

I struggled to wake myself and was sure I had been sleeping for hours;
wasn't sure if the clock was confirming or denying that belief.  Had I really slept for nearly 12 ½ hours?  I started to panic as I quickly put my shoes on; I hadn't left mom for that long without checking in with her since this whole ordeal had started over a year and a half earlier.  I was sure it was the nightmare that prompted the intense feeling of the need to get to mom as quickly as possible; I couldn't shake the feeling that something was seriously wrong.

didn't realize I had slept for less than thirty minutes until I was in the car and heading to the Skilled Nursing Facility to check on mom.  I was too worked up to even think about going back in and trying to sleep some more.  I still had the feeling that something was seriously wrong and I needed to see for myself that mom was OK.

It was eerily quiet as I made my way down the hall and to the elevator,
elevating my anxiety to a point I was having to remind myself to breathe; the elevator seemed to take forever as it chugged up to the second floor.  When the door finally opened to deposit me on to the second floor the silence was suddenly replaced by the familiar yelling and moaning coming from the room across from moms.  I was nearly half way down the hallway towards moms’ room, which was at the very end of the corridor, when I realized I had not seen even one staff member since I had entered the locked door on the lower level.  Where was everyone?

Hmmm, I couldn't imagine there was no one monitoring this wing.  I stopped briefly before continuing on to moms’ room to make a note about this observation, adding it to the ever growing list of problems I had observed since mom had arrived at the SNF.  As I got closer to moms room, the yelling from across the hall grew much louder and I wondered how mom ever got any sleep between that and the laundry machines running next to her room all night.  I was just steps from moms’ room when the yelling suddenly stopped and I heard voices coming from her room.

My heart sank as I entered the room; I had found at least four members of the staff.  There was a nurse at the head of the bed; an aide next to her and two people who I recognized as therapists on either side of the foot of the bed; I couldn't see my mother.

My heart was pounding so loud I couldn't hear myself think.

Something was seriously wrong.