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Sunday, July 14, 2013

14 - A Rocky Routine

Today is day 14 (and my 14th 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 13 posts so you can catch up with my story.  For those of you who are returning to find out more of my story, "Thank You"!  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.


 A Rocky Routine

Within a few days mom was approved and scheduled for her HBOT.  Unfortunately, the times were going to either overlap with the infusion clinic or leave us with, what I can only compare to, a really long lay over after a horrible vacation .   The good news is, that didn't last but a few days before we were able to coordinate between the two clinics to develop a little more favorable schedule.  Now we could sleep until at least 6!

 By the end of the first week we fell in to a rather rocky routine.

Our schedule made me almost miss the "free" time I had when I was working split shifts and still managing to keep my real estate business alive.  At least then I could hide in the break room or not answer my phone to capture a few minutes of down time.

But we settled in to a routine that went something like this:
Wake up: 6:00 AM -  Breakfast (take pills)
8:00 AM -  (take pills)
Infusion clinic: 10:00 AM or 11:00 AM Seven days a week (1 hour infusion)
Snack during infusion (take pills)
HBOT: 12:30 - 2:30 PM Five days a week
2:30 PM -  Lunch (take pills)
3:00 PM - Rest
4:30 PM - (take pills)
5:00 PM - News/TV
6:30 PM - Dinner (take pills)
8:30 - Snack (take pills)
9:00 PM - Bed
11:30 PM - (take pills)
2:00 AM - (take pills)
5:00 AM - (take pills)
In addition to "THE schedule", we had another schedule.  Home Health Care (nurse, PT, OT).  Doctors appointments.  Coordinating prescriptions.  I'm sure there were others too.

I was feeling pretty proud of the fact that we managed to never miss, or even be late, for any of her appointments.

Even with the obvious lack of sleep (for both of us), mom seemed to be getting better.....again.  Mom was now able to get up in the middle of the night by herself to use the restroom and take the pain pills I had set on her bedside table before I went to bed, usually 2-3 hours after she did.  The first few nights I listened intently through the monitors I had placed in her room to make sure she didn't fall or need any help.  Soon I was sleeping right through it.  Definitely better for the exhaustion level!

The pain in her back was some better, most days it was down to a 6 or 7 on the pain scale (with her pain pills).  Her outlook seemed more positive.  Most days we were able to leave the wheelchair at home and mom would stroll through the hospital with her pretty pink walker going from clinic to clinic.  We were able to do a little shopping and go to lunch once in a while.

With gentle reminders to "tuck her butt" or keep her "nose over toes" she did very well, and seemed to be improving each day.  The pain wasn't gone, but between the pain medications that she was still having to alternating every couple hours (with not a lot of relief) and her sheer determination, she was actually getting along better than I would have dared to hope a short time before.  I was still worried though.

I was worried enough that, more than once and more than one doctor, I asked a question that I didn't think I wanted to know the answer to. "Could it be cancer"? I asked on a number of occasions.  I hoped that wasn't it more than anything.  From previous experiences with loved ones I tend to look down the cancer route when there is no other explanation for pain and/or sickness.

I was assured on each occasion that they saw no reason to believe she had cancer, or to even run any tests for it.  I had watched 3 people succumb to cancer over the past twelve years or so.  At least two of those people may have had a different outcome - a "fighting chance" - had the diagnosis been made much sooner and the treatment more aggressive (if they so chose).

I worried about it constantly.
Why did she keep getting that infection?  Where was it coming from?  The pain shouldn't be that bad, should it?  With all those narcotics the pain should have subsided, shouldn't it?  And they weren't even really working - mom was just working through it.

I still wanted to know why there had been no referrals to specialists.  Even though she's doing better, she's not doing good and she had been near death more than once in the past few months.
Uh-oh.  Another one of those thoughts that stuck in my brain and would consume me all day.

In the past few months mom had suffered with A-fib.
http://www.heart.org/HEARTORG/Conditions/Arrhythmia/AboutArrhythmia/Atrial-Fibrillation-AF-or-AFib_UCM_302027_Article.jsp

I heard the acronym CHF thrown around more than once.
http://www.mayoclinic.com/health/heart-failure/DS00061

.  She had a bout of pneumonia so bad that it was a miracle she was alive.
http://www.mayoclinic.com/health/pneumonia/DS00135

She had lived with severe Rheumatoid Arthritis for nearly 50 years.
http://www.mayoclinic.com/health/rheumatoid-arthritis/DS00020/DSECTION=symptoms

She had nodules in her lungs, presumably caused by the RA.
http://www.mayoclinic.com/health/rheumatoid-arthritis/AN00345

She obviously has spinal problems, including (but not limited to):
A compression fracture,
http://en.wikipedia.org/wiki/Compression_fracture
 scoliosis
http://www.mayoclinic.com/health/scoliosis/DS00194
And, now, a diagnosis of Osteomyelitis.
http://www.mayoclinic.com/health/osteomyelitis/DS00759

She had been diagnosed with an staph infection (for that we already had a specialist)
http://www.mayoclinic.com/health/staph-infections/DS00973
and had become "septic"
http://en.wikipedia.org/wiki/Septic_shock

Oh, and, that knee, it still doesn't look quite right to me.  I was very concerned about the 25 year old artificial joint.
http://www.livestrong.com/article/96979-symptoms-failing-knee-replacement/

Why were there no referrals to any of these specialists?
I need to remember to talk to her primary care doctor about that.
I need to make him understand how important it was.

I had managed to make an appointment with her doctor that we were able to work around the infusion clinic and the HBOT clinic.  I decided that I would make asking for referrals a priority during that visit.

 Will he give us the referrals?  Am I going to offend him?  How long will it take? Who will he refer us to?

Again, more questions than answers.

Again, frustrations at our lack of progress.

Again, I am feeling lost.

Well, mom was getting better, in spite of all she'd been through.  That's good.  She will need to be better to survive what's surely yet to come!

What is yet to come?

I hope you will join me again to find out!

Have a great day.
Oh, and tell your parents you love them!  Let them know you appreciate them!!

6 comments:

kimberlycarnevale said...

Your schedule makes my head spin! Your posts are so important and full of information for others, whom I'm sure feel like they are alone. Keep up the great work!

~Kimberly
www.SpeakerKimberlyCarnevale.com

PAMELA HODGES said...

What is yet to come? I do want to know. I will be thinking of you both as you navigate the health care industry.
Were you able to get a good nights sleep?

Jeanne Doyon said...

Thanks for allowing me along for the journey. My Memere struggles in the same ways--so hard at age 95. We love her to pieces and are thankful for each day we have with her.

healthcare hostages said...

My schedule usually makes MY head spin too! Thank you so much Kimberly for your kindness and encouragement, it means a lot to me.

Oh, and thank you soooo much for your Sunday Fun day post today! I loved it!

healthcare hostages said...

There is so much left to come that I was just thinking I wasn't sure I could cover the following almost year of time in the next 16 posts! I guess I better pick up the pace!

If I wasn't an insomniac to begin with I might get MORE good nights sleep! It'll get better, don't you think?

I appreciate your comments!

healthcare hostages said...

I hope you'll continue the ride with me! It is hard as our loved one's age......It's so worth it to have the time to hear their stories and see the sparkle in their eyes as they tell stories of when they were young. Each day is a gift, cherish it and continue to be thankful!

Thanks for your comments!