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Saturday, July 13, 2013

13 - You are going to be SO exhausted!

Today is day 13 (and my 13th 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 12 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.

It did take some time to convince the doctor that I was going to be able to handle the additional care that mom would need, but I finally succeeded.  Her IV antibiotics were to be infused every 24 hours (for 6-8 weeks) at the infusion clinic in the hospital.  It wasn't going to be easy with every thing else going on. "You
are going to be SO exhausted", I was told.  I was sure he was right.  I just wasn't sure if that grin he displayed when he said it was a "I wish it was easier" grin or if it was more of a "we're going to make sure of it" grin.  I also wasn't sure I cared.  I was already too exhausted to care!

With prescriptions for new pain pills & instructions to "alternate" them every 2 hours and a schedule for the first week of appointments for the Infusion clinic, we were off.  Mom had been in the hospital (this time) for a week when we finally headed for home.....again.

We were assured someone would call us soon to let us know if she had been approved for HBOT and, if so, where and when we should go.  That would be another appointment, 2 hours a day, five days a week.

On our drive home I began mentally preparing myself to prepare myself (something I seem to do a lot of lately) for what was to come.  Thoughts popping in to my head faster than I could process them, and then they were gone.  I didn't care for the one that stuck right then.............

WAIT! Pain pills EVERY TWO HOURS?  AROUND THE CLOCK??  OK, somehow I'll manage.  I can do it.  I know I can do it.  Can I do it?
My next thought was about how early in the morning those infusion appointments were scheduled.
Now I was sure about that grin!  I was more than ever convinced about my conspiracy theory!
THEY WERE TRYING TO DRIVE ME MAD!  It would be a short drive, merely a putt actually, but still!
Maybe it was even worse.  Maybe they were trying to KILL ME!

I had been taking care of mom long enough to know that between the pain in her spine and the pain in EVERY OTHER JOINT in her body, an 8:00AM appointment was going to be nearly impossible, or at the least extremely difficult.  It took 2-3 hours just to get some of the stiffness worked out of moms joints so I could help her get dressed and another hour to get her breakfast & pills.  Then there was the 15 minutes it took me to get her out the door and in to the car, 15 minute drive time, 10 minutes to park, 10 minutes to unload mom & get to the check in desk.  We would have to be up at four in the morning to make it.

I better call as soon as we get home and try to change that time!
"Sorry", I was told.  That was the only time they had available for us for the first week, but we "might" be able to change it next week.

Back to wondering about that conspiracy theory again!

I still don't understand why we can't just do these infusions at home?  Is it because they are trying to keep the SNF's full?  No body seems to know why it can't be done at home (many insurance companies DO cover it I am told over and over by so many people!).  Every time I get my hopes up that maybe we might find a loop hole, the knot gets pulled tighter.

It occurred to me that even if we did find that loop hole, it would likely take several weeks to loosen the knot and climb through it.  By that time the infusions would likely be coming to an end.  I needed to use what energy I had to handle the immediate problems.

Somehow we made those early morning appointments, but it wasn't easy.  Luckily we only had to keep that horrible early morning appointment for a few days before they were able to change our appointment for a LITTLE later most days.

I guess I'll take what I can get!

That doctor was right about one thing - I WAS EXHAUSTED!
It wasn't looking like that part would change anytime soon!

I still can't quite wrap my brain around the reason why Medicare won't pay for the infusion at home - probably I can't because the only reason I have been given is "they just won't", and that just doesn't make sense to me.  What is the reason and why do so many people tell me they have been able to do it?  After all, it would save a whole lot of money.  It would also save a whole lot of time and energy for us!  It just made sense as far as I could see.  Ah, that common sense getting in my way again!

Oh, well, we'll figure it out.  We have to!

I didn't know how, but we would make those dreaded appointments.  We would play by the rules, or at least try to!  We would get mom better, I hoped.

Tomorrow is another day and I can't think about this anymore tonight.  I hope I can convince my brain of that soon!

Thank you for taking this ride with me.  If any of you have any suggestions on how this could be easier, I'd love to hear them!  I need all the help I can get.  I'm only one person out of the (I would guess) thousands of people having similar experiences in senior health care and senior care giving.

Maybe somebody might have an idea that I haven't thought of.  Maybe YOU have an idea that I haven't thought of!!  I hope if that's true, you will share!

Any comments/suggestions are appreciated!

Tune in tomorrow for another episode of "I am my mother's keeper"!


nicole copeland said...

Prayers to you and your mother! I worked in an nursing home for a few years is it is exhausting...Ask for help from friends to come sit with her so you can rest :)

AMummys Life said...

I hope there comes some form of relief for you soon!

healthcare hostages said...

Thank you Nicole. Yes, it can be exhausting. I do have a pretty good family support system. Unfortunately, I am kind of a control freak and for the last many, many months there have so many details that it's hard to "pass it off" to someone else. My sisters and brother; my husband; my children; my aunt have all been amazing through all this.

healthcare hostages said...

Thank you.