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Friday, July 26, 2013

26 - Excruciating, constant and increasing. For anyone "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!

Excruciating, constant and increasing

Mom seemed to be responding well to the oral antibiotic they had started her on during her last hospitalization.  It seemed they had finally stumbled on to the right medication to at least combat the nasty staph infection, which resulted in bactermia, that had threatened moms life so many times over the past 10 months.

However, with a number of assumed diagnosis including (but not limited to): scoliosis; ankylosing spondylitis; osteomyelitis; and others, the pain in moms spine was still excruciating, constant and increasing in intensity.

I felt certain without an increase in her pain medication she would likely not be able to make the trip that could save her life.  As I dialed the number I had been given for Palliative Care, I realized how thankful I was mom had agreed to participate in their Transitions program.  I was told they would be a "liaison" between us and moms Primary Care Provider and would ensure moms pain was adequately managed. This sounded good.  We desperately needed a liaison.  It actually is a very interesting concept,

Unfortunately it was only partially effective.  To be fully effective it would require the cooperation of moms primary care physician.  He was part of the equation whether I liked it or not.

I tried to follow the rules, I really did.  I would first call moms primary care doctors office (as instructed), where I would leave a very detailed message with his staff about moms pain level and other symptoms.  Then I would wait at least most of one day (if not 2 or 3 full days) before I would get a call back.  "The doctor will have to see her before he is comfortable increasing the morphine", was what I was generally told.  I didn't have a problem with him seeing her first.  I did have a problem with waiting until they could "work her in", which could be anywhere from several days to several weeks.  I remember thinking (or maybe saying): "Oh, well, as long as he's comfortable", why should we worry about mom?  I wasn't certain, from day to day, if mom had "a few more days.

It was not quite the middle of the month and I had already called the Palliative Care Transitions team more than once since bringing mom home
from the hospital around the first of November 2012 and .   Mom's tolerance to the morphine she was taking for pain control seemed to increase every few days, requiring yet another increase in the dosage.  I didn't like the idea of her being on that much morphine, but it was better that watching her suffer with the incredible pain in her spine.

Each time the Palliative Care doctor would recommend increasing the dose.  They would immediately forward the recommendation to moms PC.  More times than not it would still be a battle to actually get the prescription necessary to accommodate that increase from the Primary Care Provider.  After waiting several hours I would call the primary care doctors office to be told "the message had been left for the doctor and we'll call you back as soon as he's had a chance to review it".  That was fair enough - Any idea WHEN WILL THAT BE?

During one of those, oh so special, conversations I was told to cut a pill in half so that I would have the correct dose "since I had so many" from the last increase, they didn't think we needed any more. SERIOUSLY?  It says right on the prescription bottle to not "cut; break; or chew" this medication I explained.  "It does?", the nurse sounded surprised.

They would have to get another message to the doctor and "get back to me".  Talk about a vicious cycle!  This was only the first step in that cycle.

Once we finally had the primary care doctors OK, the second step would begin.  I know the "rules" for dispensing narcotics and I am perfectly fine with driving across town (after we finally received word the prescription was ready) to sign for and pick up the prescription, driving to the pharmacy to drop it off and returning to pick it up when it was ready.

Going through the circus act of actually getting the "approval" from
the doctor and then waiting until he had time to sign the prescription, usually left me feeling a little cranky - getting to the office to pick up the prescription to find out it either hadn't yet been signed by the doctor or was the wrong dosage or quantity just made me mad.  It was particularly frustrating when I was trying to get "all my ducks in a row" in order to take mom to appointments that would take us away from home for several days or more.

"It's like they think you are taking my pills", mom said to me during one of my rants about how frustrating it was and how much less time it would take to get ready to go if her doctor would just join the team all ready.  I had enough to take care of with mom needing more and more help just to get through the day.

It hadn't really occurred to me that he would think I was a drug addict.  "I don't know if they really think that, mom.", of course I didn't really know what he thought.  How could I?  He barely acknowledged my presence.  I also didn't really care what he thought about me personally.

Since it was (in my opinion) imperative that I took mom on this winter road trip so she could be seen by several specialists in several disciplines and I was having trouble getting any cooperation from the PCP, I called for a "house call" from the Palliative Care doctor (yes, they make house calls).  After evaluating mom and looking over the records I kept for EVERY dose of pain medicine dispensed (in addition to my spreadsheet of all the medications), she called the PCP to recommend the increased dosage and to hopefully facilitate us actually getting the prescription before we were due to leave in a few days.

After being connected to the Primary Care doctor, the Palliative Care doctor advised him of moms current condition; pain level; etc., and made the recommendation for the increase in pain medication.  "No", I heard her say.  "No, I don't believe that is the case here at all", she continued, "If I did, we
would be having a whole different conversation".  When she disconnected the phone she looked at mom and then at me, "Don't be offended by that".  He really had thought I was taking her drugs!

The Palliative Care doctor spent a good deal of time telling us of the reports that had recently come out regarding care givers (and other family members) stealing prescription pain medication.  Morphine was at the top of the list.  "So, please try to understand he is just trying to be diligent", I think she knew it was sounding kind of hollow about then.

I felt outraged that after all this time he had barely spoke to me or even acknowledged my presence during moms many months of hospitalizations or when I accompanied mom to her appointments.  Her PCP had "jumped" to the conclusion that I was a drug addict.  I understand the need for diligence, I really do.  However, you can tell a lot about a person by actually talking and listening to them.  He had done neither.

I really hoped by taking mom away from here we would find a doctor that would have basic communication skills.  Someone with compassion.  Someone with empathy.  Someone with humanity.

I knew they existed.  Don't they?  They had to!  Didn't they?

Her first appointment this trip was scheduled for November 19, 2012.  I was just waiting for a break in the weather before we would resume our search for a doctor that could help mom.  Or, maybe a doctor that would, if they could might be a better way to put it.

I hoped they could help mom.  I have to keep reminding myself that I might not always like the answers we get.  At least if we had an answer (even if it wasn't the one we wanted), we could process the information and figure out what our next move was.

What if we get an answer we don't like?  Well, I guess I'd rather have an answer I don't like than an assumption I don't like.  At least then we can figure out our next move.

What would our next move be?

I am not a Chess player, but I think I would rather be a queen than a pawn.

Will there be any moves left?

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4 comments: said...

A few years ago, my mom was in the hospital with a serious infection so I understand how scary and frustrating this can be. One thing for sure, you truly are your mom's advocate and she is very fortunate to have you in her corner. Bless you for taking such good care of her.

Nicole said...

Pain is something I do not take lightly. Since I was a child, the smallest ache, pain, cut, scratch, bump, bruise, has hurt unlike anything anyone can imagine. I hope comfort is found soon. xx

healthcare hostages said...

I'm sorry you had to deal with the frustrations and I am so sorry your mother had to deal with the infection!

Thank you for your kind words - I try!

Bless you for taking the time to post your comment.

healthcare hostages said...

Pain is never fun for sure. Pain met with indifference is maddening!

Thank you for taking the time to read and comment on my post!

I hope you will stop by again!