16 - Call me NOW!

Today is day 16 (and my 16th 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 hope you'll take the time to go back and review my first 15 posts so you can catch up with my story.  If you are thinking there is nothing in our story 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 and needs an advocate, no matter their age.  For anyone who has been along for the whole ride - Thank you!  I appreciate the opportunity to share our story.  Regardless of whether you read only this post or if you have read the entire blog, I would also appreciate your thoughts and comments........please take an extra minute and scroll to the bottom of the page to the comments tab and share your thoughts and/or experiences.

Call me NOW!

As I stared at the phone, willing it to ring while waiting for the doctors office staff to "research" what happened with moms referral, I had visions of "Miss Cleo" and her television commercial several years ago.  "Call me NOW!" I chanted silently to myself as I waited.

I was not sure I could endure the wait if it was as long as it normally is when waiting for a response from moms doctors office.  Of course, when (or if) they did call back, I figured they would just tell me that it was someone else's mistake and we would just have to keep waiting.  To date they had never "owned" anything that went wrong.  However, they were always ready to take credit when something went right, not that there had been much opportunity for that this year. They also never seemed to take an urgent approach.  That was just the "norm", what I had come to expect. Anything other than that would just be a pleasant surprise.

I do like a good surprise!  It was a relatively short amount of time before I received a call back.  A kind voice told me they "didn't know what had gone wrong" or who had "dropped the ball", but they were "very sorry".  This was NOT a good surprise!  Through my tears of frustration (and fear), I curtly asked if "maybe this could be the reason it took so long to get accepted" and then said something to the effect of, "Sorry is NOT going to help my mother".  I'm sure I also used some other colorful choice words as I berated their lack of integrity and questioned their competence.  At some point, it occurred to me that this was someone I had not ever talked to before - I don't know why I thought it or why I cared.

I thought she must be new because she did not interrupt me with proclamations of no wrong doing on their part.  She did not interrupt me at all.  She listened patiently until I took a breath.  Once I finally did she calmly, sympathetically and professionally apologized for the mistake.  (She's gotta be new!)  She also assured me she would "see what she could do" and that I would hear from her before the end of the day.  I wasn't convinced, but she seemed sincere.  Which probably meant she wouldn't be there for long - that's just how it seemed to go.

I busied myself with the myriad of things that had to be done - I couldn't waste anymore time staring at that phone, willing it to ring.  You've heard of the old adage "a watched pot never boils"?
Well, I am convinced that a watched phone never rings either!

I must be right because as soon as I turned my back that phone rang again.  This person, whom I was sure was not going to last long, called me right back - she didn't seem to fit the profile I was accustomed to in this office.  She still didn't know what had happened or why the referral hadn't gone through, but she reasoned that we would just "waste more time" by worrying about why it happened or who to blame.  There was that voice of reason again and I had no choice but to listen.

She would take care of it, she would send it as an "urgent" referral and if I hadn't heard from anyone in a "few days" days to call back.  I didn't understand why it hadn't been sent as "urgent" in the first place, it WAS urgent!  This is MY MOM we're talking about.  I couldn't quite wrap my brain around "urgent" and "few days" in the same sentence, but I would give her the benefit of a doubt.  She had seemed sincere.  She had acted genuinely concerned about mom and our current situation.  (She's new alright! - hasn't been properly tainted - er, I mean trained yet!)

I would try to wait a few days.  I would try to distract myself.  I would try to be patient.  Sure glad I said I would "try".  I failed.

Within a few hours of speaking to her, I once again, called the facility.  Why do I do this to myself?  It's just more frustrating to know that it's not been done.  I'm sure it's not been done yet - it's only been a few hours -  but I have been wrong once or twice.  Besides, if it hasn't been done yet, maybe I can convince them to see her anyway.  And, if it has been done, then I can focus on something else, right?

I wound through the voice prompts once again before finally being connected to a live person.  After I went through the usual stuff - Name, Date of Birth, etc. - I was asked to hold "just a moment".  I waited for what seemed like an eternity, but was probably less than a minute.  The referral had "just came in".  I'm sure my heart skipped a beat as I held my breath.......Was this for real? (I TOLD YOU SHE WAS NEW!!!)

It was explained to me that the referral still had to be sent to committee for review and (hopefully) acceptance before an appointment could be scheduled.  I wondered how long it would take for the committee to review.  I wondered if anyone had ever died from waiting.  I wondered if this was really happening.

I didn't have to wonder for long.  The representative cheerfully pointed out that they were "generally very busy" and that it would depend on how many had come in before moms referral as to when it would actually even go to the department committee.  After all, they had people being referred from all over the country "every day" and every committee from every department did NOT meet EVERY DAY.  "It could still take some time", she explained.  I had to make her understand how long we have already been waiting, my mind went in to overdrive trying to think of what I could possibly say that would change this course - how much would it cost to bribe her?  May she could just move us to the TOP of the pile NOW!

I felt the panic rising.  There had already been so much wasted time, how much more time did mom have?  A soft voice brought me back to the conversation at hand, ".......but, since it's "urgent", it should move up in the line fairly quickly".  Another relative term - "fairly quickly".  I thanked her, got off the phone and began wallowing in my own self pity and sense of failure.

Moms approved HBOT and IV antibiotic therapy will be ending fairly quickly.  I am terrified.  I am thinking one or both of those therapies might be the only thing keeping mom alive.  What's going to happen when they ended?  If she had MRSA, can she live very long regardless of what happens?  http://www.advisory.com/Daily-Briefing/2012/06/15/Study-Six-factors-that-predict-MRSA-mortality

More importantly, what kind of quality of life will she have while she is alive?  She is already on so much pain medication her mind is sometimes foggy.  Her smile is not as bright as it once was and the sparkle in her eyes is all but gone.  I just didn't know what to do anymore.  I was kind of feeling like the "crash test" dummies - how many more time are we going to have to hit that wall?


There goes that darn phone pulling me away from my pity party......don't they know I don't want to be bothered?  Seems everybody wants to call to "check in" on us.  I was feeling pretty negative.  I wasn't sure I could find anything positive to say right now if I answered the phone.  I didn't really think I could talk to anyone right then.  Since I figured I wouldn't hear from anyone about moms appointments for several more days I would let it go to voice mail today and screen calls.  I can return them tomorrow.

I didn't want to answer the call that came in just a day or two later from an "unknown" number, I still didn't feel like talking to anyone.  I didn't want to take a survey.  I didn't want to buy some piece of medical equipment that "could be" 100% paid for or reimbursed by medicare for mom.  I didn't want to hear "important information" about credit card accounts that "there is no problem with".  And, if it was yet another of moms appointment reminders, they could leave a message. WAIT!  Something made me change my mind.  I dove for the phone just as it quit ringing.

I immediately began beating myself up because that "might have been them".  How could I be so stupid......I have been waiting and waiting for a phone call and now I probably just missed our last chance!  I was trying to get my head to clear so I could focus and decide what I needed to do when the phone rang again.  Without looking at the caller ID I punched the on button and was greeted with a reminder from the power company that they "would have someone in our area.......".  Ugh. Back to my self chastising.  How could I not have answered first call?!  Just then "unknown" popped up on the ringing telephone in my hand.

I answered it so fast I almost dropped it.  After introductions; verification of information and pleasantries, I was given an appointment date and time for mom.  Finally, we had a doctor that could maybe at least help her with the RA.  They were "sorry it was going to be so long", that was just as soon as they could get her in.  I stammered and stuttered, thanked them for their time and quick response and hung up the phone.

I need to remember to say "Thank you" to that girl at the doctors office.......I wish I remembered her name!  I hoped she would be there when I took mom next time.  I headed in the house to tell mom about the call and stopped short.

Before I said anything to mom I had to find out when her other "daily" therapies would be completed here.  There were a lot of things to figure out.  This is what I had asked for.  This is what I wanted.  This had to be done.  How are we going to do it?  Can we really make this happen?  Do we have the financial capacity to get through this?  It will require 250 miles (each direction) for the driving, approximately 5 hours each way; hotel rooms for at least 3 days each time we went - I was sure mom could not handle the round trip without a day on either side of the appointments; and I was sure there were going to be other expenses.  There was so much to think about!

I had been told over and over again by moms doctor(s) and others how long it would take to get an appointment.  I hadn't thought ahead to some of the logistics.  I thought I would have months to figure out the details if we ever got the appointment, but I could do it in weeks.  Couldn't I?

I just hoped, with enough pain medicine on board, that mom would be able to make the trip.  I wasn't sure how she would do sitting for 5 hours in the car.  I also wasn't sure we would have enough room in the car to haul all the assistive devices mom now needed to just get through the day.  The worries were endless: Where would we stay?  How long would we have to be away from home?  Who would care for the animals?  What was it going to cost?  Was it the right thing to do? My mind was going in so many directions I was getting dizzy.  I needed to focus!

Another old adage comes to mind: "If it's meant to be, it will be".

Is it meant to be?  Or, will this be yet another dead end?

What do you think?

Am I doing the right thing?  I'd really like your thoughts, opinions and ideas.

I hope you will share your comments and/or suggestions for me!  Sharing promotes caring!