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Monday, July 15, 2013

15 - Why does this have to be so hard?

Today is day 15 (and my 15th post) in the 30 day blog challenge I joined.  For anyone "just tuning in" this post may leave you wondering what the heck I am rambling about, I promise it won't take too long to go back and review my first 14 posts so you can catch up with my story.  For anybody thinking there is nothing here that could affect you, I hope you're wrong.  I hope you are wrong, not because I wish bad things for you, but because that would mean that you are truly alone in life.  You see, although my story revolves around senior care giving and health care, I believe there are lessons within my story that could be applied to ANYBODY that might EVER know someone (or be someone) who is incapacitated, no matter their age.





Why does this have to be so hard?
In preparing for moms follow up appointment I had a number of tasks to complete to be ready.  Updating the spreadsheet I had created of her many medications wouldn't take long (unfortunately I had a lot of practice).  I don't know why I bothered.  Usually it was afforded barely a glance before being handed back to me or set on the counter to be forgotten.  Besides, I had something more important on my mind.

I mentally began gearing up for battle.  One I wasn't sure I could win.  One I wished I didn't have to fight.  One I was not certain I was even equipped for.  Why does this have to be so hard?

Somehow I had to make moms primary care doctor understand that mom NEEDED something more than she was getting.  She needed something to alleviate the pain in her back.  She needed something to control her RA.  She needed to be seen by a cardiologist.  She NEEDED more than he was obviously able to provide.

I spent hour after hour researching moms many symptoms and diagnosis's as well as doctors and facilities, all over the country, looking for answers.  Several of them sounded promising.  I made numerous phone calls, sent dozens of emails and stalked a handful of doctors.  I needed to find out what I had to do to have mom seen at one of these places by one of these doctors.  I had to find the help she needed - I just wish I knew what or where that was.

Although a couple of the doctors and/or facilities would see her without a referral, most required it (even though her insurance said it did not).  The couple of places that would see her without the referral would take months to get her in.  I didn't think we had months.  Sometimes I wasn't even sure we had days.  Mom was losing her will, I could just see it.

Coordination of thought and preparation of words simultaneously has never been a strong point for me.  However, I thought just maybe this time I could somehow make him understand just how important it was that, with the complexity of moms health and the host of problems we were dealing with, it was imperative that we look outside of the box.  I really needed to get him to expand the "team".   Heck, I needed to get him to JOIN the team!  Mostly, I needed him to understand that, although I might be a player he would just as leave on the bench, I was part of the team.

More importantly I HAD to get those referrals - maybe then we could recruit some dedicated players.  I was fed up with playing the game with someone who just didn't seem to have their heart in it.

I've not been real fond of my mother's primary care doctor for a number of years.  I just have never felt that he really had moms "best interests" at heart.  His bedside manner left a lot to be desired.

I was pretty sure that he would prefer that I not accompany mom to her appointments - I was just a bother and my questions took up too much time, or at least that's how it seemed.  This wasn't the first time my mothers complaints, which were few and far between, had been ignored or deemed to be "that darn rheumatoid" (which certainly may be a contributing factor).  This was just the most serious it had ever been.  This seemed to be never ending.

After waiting way longer than one should (in my opinion), we were finally ushered toward the back.  After all the "pre" stuff the nurse does, we were shown to a room.  "Maybe you would like to wait in the waiting room", the nurse gently prodded "this room is pretty small".  MAYBE I WOULDN'T!  We've been through this before, more than once.  Mom and I (and the rest of the family) had decided that someone needed to be with mom for her appointments - a second pair of ear and eyes were necessary.  That meant listening to what the doctor said; asking questions that needed to be asked; providing her medication list (for what it was worth); etc., not sitting in the waiting room with an outdated Golf magazine.   Most importantly, today it meant somehow I get those referrals - and preferably OUT of the area.

Once we finally had the exam room so both mom, myself and the doctor would be able to all fit in the room without standing nose to nose, we waited for the doctor to arrive.  As mom worked her puzzles, I went back to my task of deciding how I was going to get him to understand the need for that second opinion I had been asking about for months.  It was truly consuming me.  There HAD to be a way.

With, what always strikes me as, a forced smile and his usual attempt at humor (at least I hope it's a bad attempt at humor), the doctor joins us.  "I see you're still with us" or "You must be made of barbed wire", always makes me feel that he's surprised and possibly a little disappointed mom is still alive.  I need to focus.  I need to be pleasant.  I need to be persuasive.  I NEED his help with these referrals.

We discuss moms intense pain levels and I suggest maybe she should see someone who might be able to help figure out what might help.  Instead we were given a prescription for a different pain medication that will "hopefully help".  One down, no referral for pain management.

He listens to her heart and comments on that "darn" irregular beat.  "Shouldn't she maybe see a cardiologist"?, I ask.  I reminded him of the A-fib and asked about the CHF again.  I also point out that she still has some pretty scary fluctuations in her blood pressure and a good deal of pitting edema in her feet and ankles. He doesn't think it's necessary to see a cardiologist "unless we have more problems".  Are you kidding me?!  I have to remind myself to breathe.  How many more problems do we have to have?  Two down, no referral for cardiology.

He listens to her lungs and comments on that "same old rattle".  I ask about seeing someone about her lungs.  Also, "not necessary".  It's most likely due to the nodules in her lung from the RA, he thinks.  Three down, no pulmonary referral.

I think I may have been clenching my teeth when I asked, "So, what are we going to do about the RA"?  He would defer to moms Rheumatologist for that.  WHAT?!  ARE YOU KIDDING ME?! Luckily mom spoke before I had a chance.

Mom very crisply reminded him that she no longer had a rheumatologist.  She seemed really annoyed when he asked why - we had been through this before.  He clearly had not listened to her during our last visit when she told him she needed to find someone new and had asked him for a referral.  She had gone in to great detail the first time explaining that she was not interested in seeing a doctor that basically told her to make plans for her funeral rather than trying to help her find a solution or referring her to someone who might.

He then said that second opinions would not prove beneficial.  "They wouldn't tell us anything new", he insisted.  "It won't help", he told me with a condescending smile.  "Will it hurt?", I wanted to know, "can we be any worse off than we already are"?  Bingo!  Those must have been the magic questions.
It was amazing that all of the sudden he spoke of the need for a referral to a rheumatologist to address and monitor her Rheumatoid lung.  It was like the idea had just surfaced, and of course it was a better idea now that it was his!  I sure wish I would have thought of that!

We left his office that day with the assurance that he would send a referral to (a nationally recognized institution) for an RA consult.  It was a start, right?  I still wanted the other referrals, but  we would have to take what we could get today.  We had already over stayed our visit, as the billing would show later with it's "extended visit" coding and costs.  We were assured the referral would be sent "right away", but that it could take a while (possibly months) to hear back from them.  There was no guarantee that they would even accept her.  With the newest diagnosis (that we first learned about during that visit), I was not even sure it would matter, but I couldn't give up!

At least a new diagnosis gave me something to do to pass the time as we waited.  Obviously I don't have enough to do!  More research - I had to learn as much as I could, certainly more than I knew about MRSA.   http://www.mayoclinic.org/mrsa/  Why hadn't we heard that term used before?  Who made this diagnosis and when?  How could we not have been made aware of it?  What would this do to our chances of finding help?  Was there anybody that even could help now?  Was it even possible for mom to improve with MRSA in her blood stream?  Should we just give up and enjoy what time we have left?  Who am I kidding - mom was in way too much pain to enjoy much of anything.  How much worse will this nightmare become before I wake up?

We resumed our daily, mind numbing, schedule and waited for someone to call about the referral.
 I am not very good at waiting.  A couple days seemed to be a month and by the time we had waited almost 2 weeks I couldn't stand it anymore.  I had to know what their definition of a "while" was.  How much longer would we have to wait?  Once they finally called, how long would it take before we would get an appointment?  I had to know something before I lost my mind, or at least what was left of it.  I had to know something before I lost my mom!

I, once again, was searching the Internet.  It took me only moments to find the number to call to inquire about "upcoming" appointments at the facility we were waiting to hear from.  In just a few more moments I was connected to a very nice, extremely helpful representative who spent some time looking for the referral.  They told me they would do a little research and call me back.  Less than an hour later I was assured that there had been NO REFERRAL sent yet.  I felt my blood start to boil.  I think I forgot I still had the phone to my ear.  It startled me when she spoke again, "Once the referral is received the department committee will review her case".  It could take some time after that before they would have an appointment available IF they accepted her case.  I was furious.

My next call was to moms doctors office.  My hands were shaking as I dialed the number and made my way through the voice prompts.  My mind was racing.  I really shouldn't have read Robin Cook thrillers in the 80's & 90's - Mortal Fear  http://en.wikipedia.org/wiki/Mortal_Fear_(novel)  sure seemed to be more than just a scary read about now!  I seriously wondered if they WANTED mom to die.  I remember thinking while reading that novel in 1988 how terrifying to think the world could ever come to that.  Now I felt like we were part of the story. I really need to get a grip, I'm going to lose my mind!


I tried to sound calm as I asked to speak to the doctor.  He was "out of the office" until............
I didn't really care where he was, I just wanted to know why moms referral had not been sent and I wanted to know NOW! They would look through her file and "see what happened".  I was promised a call back "as soon as possible".  I have seen my mother's file, it makes a law manual look like a Reader's Digest magazine.  It could take them days to get back to me "as soon as possible".

Have I mentioned I am not very good at waiting?  Unfortunately it was something that I seemed to be doing a lot of for the past 5+ months.......waiting rooms; emergency rooms; clinics; pharmacies, seems that's just what we do - WAIT!

They (who ever "they" are) say "everything happens for a reason".

"They" are probably the same people who say "Good things come to those who wait"

My response to whoever "they" are:

What could possibly be the reason be for all we've been through?

I'm still waiting - bring on the good things, I could really use some good things!

Truthfully, I know in my heart that God DOES have a reason for all things.  I don't have to understand, but I need to accept.  I also know that I should "let go and let God".  I try.  How do I know if I am really doing that?  Maybe God wants me to be a control freak.  Maybe He wants me to fight this fight.  Or, maybe He doesn't and I am fighting His will.  How do I know?

The other saying that keeps nagging at me is "Bad things happen to good people".

We are "good" people and this is really bad.  At least I think we are good people.  Maybe we aren't so good.  Maybe we brought all this tragedy on ourselves.  Maybe we are being punished for some misdeed from our past.  Maybe we've followed the road as far as we can.  Maybe there really isn't anything else that can be done.  Maybe it's time to give up the fight and just try to help mom be as comfortable as we can until the end.  The end seems so close all of the sudden.

Why haven't they called?



I don't want it to be the end.  I pray it's not the end.  It's not the end?  Is it?

They better call soon!  What if they don't call?

Will they EVER call?

I guess we just have to wait and see.



























6 comments:

Amethyst Wyldfyre said...

Holy Cow this is quite the journey for you - glad to see that you are putting all that "waiting time" to good use and chronicling the experience - I really question whether this is a "health care" system at all! Best to you and your mom as you navigate this gauntlet.

healthcare hostages said...

Yes, it is quite a journey. Sharing some of our trials and tribulations seems to be therapeutic for all of us.

Thank you for taking the time to take part of the ride with us. I truly hope you find something useful (or at least interesting) in our story.

Thank you also for your kind words and well wishes.

I hope you will join us for more of the story!

Abbas Baba said...

What a dreadful experience for you and your mother. I had to keep reading to the end of your blog to find out the outcome and was disappointed that you were still waiting. I hope you have the strength to keep on fighting for your mother to get the care she deserves. I know that there are times when we have to accept that what we wish for will not happen and then leave the rest to God. But, we also have to do what we can and in this case this means the doctor doing whatever he can to live up to his Hippocratic oath in order to save life. And for you, you would never be happy if you didn't do everything you could for your Mum.
Wishing you the best possible outcome.
Abbas
(calling in from UBC)

kimberlycarnevale said...

Quite the journey, indeed. I'm so sorry you and your mom are going through this. So grateful for all the folks you are helping with your story. Taking care of a senior, or other patient is a full time job---and as you demonstrate in your posts, you are often called to do other people's jobs as well. So frustrating. I admire your strength and fortitude. Blessings and comfort to you and your mom.

healthcare hostages said...

I don't know if you were able to take a few extra minutes to read my earlier posts, but I thank you for taking the time to read at least a part of our story and sharing your comment.

I also was disappointed that I was still waiting! I may go bald before this is over!

I pray for strength often and I do believe that God expects us and equips us to help ourselves sometimes.

Sometimes I think maybe HIPPOCRATIC is confused with another word with a very similar spelling and sound! No, I wouldn't be happy with myself if I just gave up without exploring every avenue.

Thank you so much for your comment and kind words!

Have a wonderful day.
Brenda

healthcare hostages said...

It is quite the journey, isn't it? Do you really think I am helping anyone else? Do you really think by sharing our experiences and pain others will benefit? I want to think so, but I am having trouble digesting that I might be able to help others through this journey - As I write I remind myself of my original goal of self imposed therapy! It is frustrating and downright maddening.

As always, thank you for your understanding; encouragement; kind words and blessings. And thank your for your daily posts which inspire me and always leave me with a LOT to think about!

(((((hugs)))))