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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?


Tanya said...

I want to let you know that I am here and very interested in your story. I check everyday for updates actually. (blush). I am never really sure what to say because I know this is all in the past so nothing I can say will make it better. I was a critical care nurse before my RA diagnosis, so I know the medical field both good and bad. I cared for my great-grandma, all 4 grandparents, and my mother in my home until their deaths. I am now attempting to care for my father while fighting my own RA battle. I connect with your tale on so many different levels. You write with as much spice as you need. I have been cursing that home since the "Ouch". I hope it wasn't as bad as I suspect.

healthcare hostages said...

Thanks Tanya! I am so glad to know you are still hanging with me! I promise I am going somewhere with all this. I am not sure how bad you suspect, but I expect it will make you cringe even with your vast experience :(

Just knowing someone is really connecting is helpful, but I am sorry you connect on so many levels.