Caregiver fatigue

It's real.  It's hard.  It's consuming.  I'm tired.  Not tired like I haven't slept tired (but that's true too). The mental and physical stress of being a full time, rarely get a break caregiver is weighing me down.  I've said this before, but in case you don't remember...Lillian cannot bathe, bathroom care, or feed herself.  She can dress herself, but the choices are not always the best.  Most of my days are spent from one end of her mood to the other end.  One end being she's mad at me for taking care of her to no personal space love.  Aside from personal care giving, there is medications, treatments, doctor's appointments on end.  I.am.tired.   Of course, there is constant concern regarding illness and am I doing what's right and yada yada yada....never.ending.  

I am so grateful, we have managed thru December without hospitalization.  I have experienced joy and peace throughout the season while walking through tough days.  I am grateful but I'm tired.

I did not want to go to church today.  I received a text from a friend who is in her own caregiving battle.  My first thoughts are that she must be tired.  I told her how I felt and asked her how she felt.  We know the Lord is our strength.  Most of our days, though, are fighting uphill battles with those we love the most.  We got into church just as the praise songs had started.  We are sitting in the balcony to avoid the crowd.  I miss physical contact and greetings with my church family.  So I often holler from the balcony to blow kisses and air hug those that I miss.  

I wanted to take E to see a movie over Christmas break, but I have to think and look at showtimes and try to go when I hope the rest of the world won't be attending, in the end, I will let Matt take him and I'll be on duty with L for the duration.  I know you might be reading this and thinking, that's not such a big deal.  Having your family constantly divided it exhausting.  

Thank God for his neverending mercy and grace, because I need it.  I NEEEEED it.  

Over the hill and how about that CT?

 Lillian is doing better, still needing frequent treatments and still has a good cough, but definitely over the hump I believe.  We saw her plastic surgeon today for the results of the cat scan and her entire left frontal sinus is blocked all the way to her nasal septum. He does not believe it's a tumor.  He's referring her to ENT because she may need a surgical procedure to drain it...oh and she has to have another head CT to see, if by chance the steroids helped at all. Long day...long week...long couple of weeks.  

17...sick...and no scope next week

 So Lillian had her 17th birthday and it was so much fun.  She enjoyed herself so much!   A week later, she got sick. A respiratory infection, I'm sure. I had to go up on her treatments every four hours and prayed things would not get worse.  She had an appointment today with her pulmonologist that they added us on to so he could give clearance for the scope.  He did not clear her.  So the scope we have been waiting to do for well over a year to check her Crohn's disease is not put off until March. I'm fine with that, really...I don't want her under anesthesia sick and neither do the doctors.  

Now, to say everything was smooth sailing...it wasn't.  I had to leave here (have her fed and treatments done and have Ezekiel to school by 8) as soon as I dropped off Ezekiel to get to her 0930 appointment.  Guess what, she wasn't on the schedule.  I recently got a new phone and I couldn't log in to mychart to show the messages that clearly stated she had a 0930 appointment.  After quite some time, a young woman came out apologizing over and over that she put the date in the system wrong and we could go ahead and see the nurse practitioner...(in this case, I would have preferred her doctor but what. ever. ) Immediately, I was near tears, which is cray.zay.  Why should that make me dissolve into tears???  Lord help me be more gracious....ugh.  

They are putting her on a round of steroids and if there isn't significant improvement by Monday, I'm to call back. I'm also to increase her inhaled steroids for the forseeable future.  She's supposed to have an infusion next week and I'm thinking that's not going to happen if she's still in this condition.

I'm tired.  It's been a long busy weekend through today with my husband at work.  I'm so grateful she's not in the hospital.  I can't help feeling a bit discouraged.  She's never cleared up from this previous nasal issue either.  I'm rambling.  

That's the story for today.  Pray for her.