A glimpse at senior health care through a care givers eyes. Healthcare reform will be worthless if we don't see an attitude change in many providers. Although my story is focused on senior health and Rheumatoid Arthritis, I believe we are all affected.
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/thoughts.......it 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
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”.
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Has anyone ever asked YOUR opinion about what should be "reformed" when it comes to healthcare? Well, they have NOW! Can you think of one thing (or 10) that would better our healthcare system?