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.
Wednesday, January 8, 2014
..........had to do the dance.
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. I very much appreciate your thoughts and comments.
For anyone who has been along for the whole wild ride - Thank you!
.......had to do the dance.
The problem with rumors and gossip is that no matter how true
they may be, until they can be substantiated, the powers that be must follow
their procedures - no matter how much harder it makes it on everybody (including themselves).
Contrary to what the first two therapists had
said (who had not been there for an evaluation, but simply for daily inpatient
therapy), mom had been told by nurses; therapists; and even doctors that she
had been accepted and would be moved to the Acute Rehab Unit within a couple
days, but the paperwork hadn't made it to the Discharge Planners’ desk, so we
still had to do the dance.
“I will NOT agree to mom being transferred anywhere that there
is not a doctor on staff” I told the planner, determined to stand my ground. We had been down this
path before, if mom couldn't go to Acute Rehab I wanted to take her home and we would continue her rehab there; I knew once I got her home I could provide the care she needed. I had serious concerns about placing mom in a
Skilled Nursing Facility. It had been my
experience and was my opinion because of the tendency for those facilities to staff at the minimum level required by law, there simply weren't enough hours in a day for even the best intentioned nurse, CNA or therapist to provide the level of care I felt my mother (or any patient with multiple
Up to this point our exchange had been civil and professional
but I had worked with this Discharge Planner/Social Worker before; we both knew
this could get ugly. She was just
starting to tell me why I “couldn't” take mom home when there was a knock at
the door, “TRANSPORT” they announced as they pushed the door open; ten minutes
later I was pushing the cart full of moms’ stuff down the hall to the Acute
Rehab Unit. Disaster averted! For now.
Mom was settled and officially admitted to the Acute Rehab Unit
on July 16, 2013, four days following surgery for the removal of her old,
infected prosthetic knee. She had rods
and an antibiotic spacer holding her knee straight; a PICC line delivering IV
antibiotics attaching her to a pole; the chronic pain and fatigue associated
with her severe RA, to say mom wasn't getting around well was putting it mildly.
The surgeon had cleared mom to bear weight “as tolerated” and
she was working as hard as she could, probably too hard. Within two days of entering rehab mom ended up
with bursitis in her left hip from favoring her right leg so much in
therapy. I had been impressed at how
quickly they had ruled out anything more serious with X-rays and an MRI, but it
tore at my heart to see my mother in so much pain – AGAIN. It just seemed like every time we made a
little headway something new came along to throw a wrench in the plans.
As I watched mom sleep after her pain medication I wondered how
much more she could endure; how many more wrenches she could duck and which
direction they would come from. I almost
dozed off myself when the thought that maybe they would make mom go to a
Skilled Nursing Facility because of her bursitis nagged at my brain; she
certainly wasn't able to participate in therapy to the extent she had the couple days before. As quietly and
quickly as I could I headed out to find the nurse.
I had to find out what the procedure was for something like this. How long would I have to make a decision
about moms’ placement? My mind was going
a mile a minute by the time I stepped in to the hall and leaned against the
wall; I was feeling dizzy and my throat was constricting. What was happening? Why did I feel so strange? I was getting scared.
For what seemed like hours, but I am certain was only seconds, I
stood with my back against the wall wondering what I was going to do. The thought occurred to me that at least I
was in a hospital; if I went down someone would be there to help me, but what
would happen to mom if something happened to me? The next thing I wondered was how long it had
been since I took a breath. “Breathe” I
I gasped for a breath of air and instantly felt better; or at
least I felt better for an instant before I remembered what had sent me in to
panic mode to begin with. Realizing it
was getting late and I wasn't likely to get a lot of answers tonight, I changed my course and walked back in to moms’ room.
I had decided not to wake mom and was gathering my purse when
the CNA entered the room to check on mom and take her vitals. Mom stirred and smiled when I told her
goodnight. “I’ll see you in the
morning. I love you” I gave mom a kiss
and left for the night.
On the way down in the elevator I typed out a group text
outlining my current source of anxiety to my sisters and brother and hit send
when the doors opened; before I made it to the parking lot I had replies from
“Get some sleep. I’m sure
you’ll make the right decision after you've had some rest.” my little sister was
“I’m sure you’ll do the right thing. I love you” my older sister was encouraging.
“I’m sorry I can’t be there with you, sis. I trust your judgment completely” my brother
Still trying to calm down and probably looking for validation, I
sat in my car with the air conditioning blowing full blast and dialed my
husbands’ cell phone. I glanced at the
clock when his sleepy voice answered, “Hi babe.
What’s going on”?
I hadn't realized it had gotten so late and immediately regretted waking him. I needed to make a quick decision, should I
just tell him I love him and let him go back to sleep? Or, should I unload everything that was
bothering me? I chose the latter; I knew
he wouldn't have any trouble going back to sleep – he was lucky that way.
In less than five minutes I told my husband everything that was
going through my head (there’s not a lot of room in there, so it didn't take
long!). I could picture him trying to
stay awake as he listened to me ramble; I knew he had to get up at 4:00AM. “I just don’t know what to do” I finished
with a lump in my throat and tears stinging my cheeks.
“I’m sorry honey, I wish I could be there with you” my husband
was saying, “Get some sleep and I’m sure you’ll make the right decision”. He told me he loved me and we said goodnight.
I dropped my phone in my lap and sat there wondering if my
family had all rehearsed what they were going to say to me. I needed to get some sleep. I wished somebody could be there with
me. I hoped I could make the right
decision. I needed to trust my
Hhhmmm, maybe it wasn't a rehearsed conspiracy, huh?
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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?