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Wednesday, July 17, 2013

17 - Why does mom always have to be so practical?

Today is day 17 (and my 17th 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 16 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.

Why does mom always have to be so practical?

We were like school girls as we talked about how lucky we were to have gotten this referral. We
just chattered as we decided what to pack.  We talked about the things we could do in the "City".  We talked about how nice it would be to just get away.  We talked about what a miracle it would be if this new set of eyes on mom would see something that had been missed.  We were having fun getting ready to go.  Then things got serious.  Why does mom always have to be so practical?

Mom seemed to be thinking seriously all of the sudden, "I wonder how my oxygen level will do over the mountains".  Oh, man, I hadn't thought of that.  Something else to worry about.  Then, as if she hadn't just mentioned what could be a major obstacle, "I hope it doesn't snow".

I wasn't much worried about the snow.  I had driven those passes hundreds of times and many of those times had been in some pretty significant snow storms.  The oxygen, however, was cause for concern.

Mom had not been out and about a lot over the past few months and I had noticed that sometimes (with exertion) she was a little short of breath.  I wasn't sure how she was going to do over the mountains.  I didn't want to find out on top of a pass on the way to her appointment.  How could I find out before we went?

Mom's last day of IV antibiotic therapy at the clinic and the HBOT clinic would end on the same day.  September 17, 2012 we said goodbye to the nurses from those clinics.  They had joined our team and we had grown quite fond of them over the past 6 weeks.  And, now for a "trial" run.

Since mom seemed to be feeling pretty good, I asked if she wanted to take a ride over one of the mountains surrounding the valley.  Neither of us had done it in several years and it was truly a beautiful drive.  It would only take a couple hours and a home oximeter that I picked up at Walgreen's to convince ourselves that we could make it over the passes.  We had a beautiful drive, ate a great lunch, and visited lakes & camping areas that we use to fish or camp at.  We laughed at stories from when us kids were young and the silly (or stupid/scary) things we had done.  Every few minutes, as we climbed higher in altitude, I would have mom check her oxygen level.  Success!  It never went below 94% the entire way.  We could do this!

On September 26th, 2012, with my SUV packed so full I wasn't sure we could get the doors closed, we set off.  It was a fairly uneventful trip over the passes and in to the city.  We checked in
to the hotel just after 3:00PM and settled in.  We could run our for some dinner after mom rested and maybe take a drive to figure out what the best way to get to the facility where mom had been referred.  Her appointment was for 9:00AM the next morning and I wanted to figure out a route that would avoid rush hour on the Freeway.

Our exploratory expedition had paid off.  We rolled in to the parking lot at 8:40AM on September 27th, with our briefcase full of moms medical records for the past year (I had spent a LOT of time gathering them).  There were dozens of people already ahead of us in line and more people pouring in the door.  This was going to be a long day, I could just tell.  The day did get awfully long, but not for the reasons I expected.

I had figured with that many people the doctors would be running behind (which we were more than use to).  I also assumed, since I was sure they would be behind, that we wouldn't even see a doctor before at least 10:00, even though our appointment was at 9:00.  That's just what we had become accustomed to.  Some days it's great to be wrong!

Moms name was called within minutes of us getting checked in.  Blood pressure, temperature and medication list were reviewed by the "intake" nurse and we were sitting in the exam room WITH THE DOCTOR by 9:05.  I was still marveling at the speed at which we had just gotten in to see the doctor when mom began telling the doctor our story including why and how we got there.

Mom told her she understood she was 76 years old and had very severe RA, but since The Lord had let her live she wanted to do it as "comfortably as possible".  Of course we were very concerned because mom was unable to take ANY medication for her rheumatoid and had been unable to since she was diagnosed with a staph infection.  Prior to the infection mom had been on several pretty heavy duty medications including (but not limited to):
Remicade: http://arthritis.about.com/od/remicade/p/remicadefacts.htm
Methotrexate: http://www.nlm.nih.gov/medlineplus/druginfo/meds/a682019.html   and, most recently, Arava: http://www.arava.com/hcp/default.aspx

This doctor listened, asked questions and listened again while we answered.  She told mom "76" was just a number.  She also said she didn't think mom looked like someone who should be making funeral arrangements.  I was feeling pretty positive that this woman was going to be able to at least help mom with controlling the RA.  Although it had not been super active since the infection, after 50 years I couldn't believe it was just going away or getting better.  I suspected when (or if) the infection was cleared the RA would become active once again.  The doctor drained moms knee and said it didn't look quite right - we should keep an eye on it.  We then started discussing what we should do next - I wasn't liking that she started the discussion with "Unfortunately".

"Unfortunately, we're not going to be able to do much for the RA until some of these other problems are addressed", she told us.  I wanted to scream, instead I cried.  I didn't sob, but the tears were rolling.  I wanted to know how we were going to do that, we had been trying for going on 8 months.  I was confused.  What was she talking about if she "couldn't help"?

"I will pretty much have to take a back seat at least until we can get some consults" she said, and then continued, "I'll see who is available and we'll go from there".  With a promise to call as soon as she knew more and had the test results.  She sent us off to the lab for blood work and the radiologist for a BUNCH of X-rays and other tests.  In less than 3 hours we had more testing done than had been done in all of her hospital stays combined.  Even more amazing, before we were even finished with the X-rays we had an appointment scheduled to see an Infectious Disease doctor the following Monday.  The Cardiology and Pulmonary consults would "take a little longer".

Wow!  There was only one more thing that I had been asking for FOR NEARLY 8 MONTHS that I didn't have after that first visit to this facility.  I still didn't know how I was going to get a referral to a GOOD Orthopedist for her back and knee.  For now, though, I would count our blessings.

 The ID doctor had felt that our current ID doctor (who we like and trust) had things pretty well under control.  He took blood cultures and would call with the results.  He told us that the course of action would really depend on whether mom was a candidate for surgery (which he doubted with the MRSA diagnosis) on her knee or back.  He wanted to refer us to a couple of different doctors for consult and then return to see him and we would decide what to do next.  He would have someone work on the referrals to not one, but two top Orthopedists: a spine specialist and a knee specialist and let us know when the appointments would be.  He qualified with the usual "it may take a while".  I pinched myself (seriously) so hard I left a bruise.  I had to be dreaming!

For months I had been asking moms PC doctor for these referrals - in his opinion they weren't necessary.  In my opinion - they were a critical component.  We would have a lot to deal with over the next few months, but for now we needed to get back home.

As I was getting us packed to head back home,  Mom was making plans and setting goals.  They weren't the goals she would have set just last week, which might have included things like: being dressed before the therapist got there in the morning; being able to stand at the sink to brush her teeth; or getting to the restroom by herself.  They were much bigger, longer term goals than that.

She wanted to see my daughter get married in April; return to her Bible study class; and someday drive her car again (I have to admit, that last one scares me a bit!).  More immediately she planned to attend a surprise birthday party which, with the help of my children; other family members and a few friends, I had been planning  for my husband.

On Monday October 8th, 2012 my husband of 26 years would turn 60!  We were both impressed by his continued encouragement and support, and we were thankful for his willingness to let me stay with my mother without making me feel guilty (I do that without help!).  Mom & I were both excited about this party.  In addition to being excited though, I had a LOT to get done in the next week.  I had only planned on being gone 3 days, not a week - I had lost 4 days already in the planning and execution of said party!

A lot to think about on our drive back home: Our good fortune with the referrals; our future; the party; how much it was going to cost to make all these trips; and, the fact that it can snow a LOT during the winter in the Rockies (and sometimes spring, summer & autumn too!).  I also wondered how I could make numerous trips more comfortable for mom.

Mom was in a lot of pain on the trip home, but in the best spirits I had seen in a long time.  She gushed about the doctors we had just seen. Mom rubbed her arm where blood had been taken and must have told me 10 times that trip how gentle they had been when drawing blood, "They didn't even leave a bruise".

I marveled at how quickly things were happening.

We had to believe these people could help - it sure seem like they wanted to!

We made a pact on that ride home that we would do "whatever it took - no matter what!" to see this through.

What do you think, can we do it?

Do you think we should do it?

What could be the harm?

What could stop us?

I wish those voices in my head would give me an answer once in a while instead of so darn many questions!




14 comments:

Stacy said...

Following your story with interest. Both of my maternal grandparents had severe RA and as I watch my mom's hips hurt more and more, I wonder what the future holds for us.

NOURISH said...

I'll have to go back and get caught up - as I'm not sure the back story - but good so far

Anonymous said...

Questions are good for the soul! <3 It can save a life! :-)

healthcare hostages said...

Thank you Stacy. I appreciate you taking the time to follow our journey.

I hope your grandparents didn't suffer too bad with the RA......it's truly a nasty disease! Don't let your mom wait too long to take steps towards a resolution for her hips. Quality of life can certainly be diminished when pain is in the picture!

The future is so uncertain for us all.

I hope you will continue to follow our story. I hope you enjoy the reading (of a pretty yucky subject!), I hope you find something of value in it!

Have a great day!

Brenda

healthcare hostages said...

I hope you can spare a few minutes to go back and take in the whole story, but if not I would love it if you will follow us from here!

Thanks for stopping by!

Have a wonderful day.

Brenda

healthcare hostages said...

Indeed! Just wish I always liked the answers!

Thank you for your comment.

Have a great day.

Anonymous said...
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kimberlycarnevale said...

Again, wonderful job portraying the ups and downs of your emotional story. Looking forward to continuing to follow the journey.

Blessings to you and your mom.

~Kimberly

kimberlycarnevale said...

As always, very captivated by your ongoing story. I love the tender moments that you include, ones that are SO important to cherish; especially when going through these times. It's so easy to lose sight of the tiny gifts in life, you've captured them beautifully.

~Kimberly

healthcare hostages said...

Thank you Kimberly. I know sometimes (ok always!) my posts are longer than "average" and I so appreciate your encouragement and support. I promise we are about to pick up the pace on this journey soon!

A good friend is hard to find but impossible to lose! Although we have never "personally" met, you are a good friend!

Thank you again!

Brenda

healthcare hostages said...

Thank you so much that's very kind of you! i very much appreciate You're taking the time to read my posts And taking the time to comment. I hope you will join us for the rest of the story!

Anonymous said...
This comment has been removed by a blog administrator.
healthcare hostages said...

I don't know how 17 comments on this post ended up in my spam folder, but I just saw them and am so sorry I didn't respond earlier!

I'm glad you find the story interesting. It's been a little rocky for me to relive some of the horror. As I write I find myself reliving the emotions I felt. I hope I don't bore too many people when I get carried away by those emotions!

I also follow your posts with much interest.

Thank you so much, my friend!

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