Priceless

Some events are hard to put in to words.........some posts are very difficult for me to relive as I tell our story.  Please be patient with me as I struggle to spare you some of my very raw emotions on this subject.  Many posts are written (and re-written) several times as I attempt to capture the meat of the story and leave some of the seasoning behind!

For those of you just tuning in and wondering what I am rambling about, I hope you will read my earlier posts and catch up with our story.  For those of you who have been along for the whole wild ride, thanks for hanging with me!  I would very much appreciate your comments/thoughts.....

........it helps to know someone is out there!

One year ago...............

Priceless

“Thanks for sharing your birthday cake with me” mom beamed as she wiped the cheesecake from around her mouth.  I don’t know if I looked tired or if mom just knows how much I like to sleep in the mornings (since I don’t do so well night), but before I left that evening mom said, “I’ll be fine in the morning, you should sleep in a little tomorrow for your birthday”.

I had celebrated my 50^th birthday a day early with my older daughter and her beautiful family at the Cheesecake Factory; I had never been there before.  Getting lost on the way was frustrating; circling the parking lot, for what seemed like forever, was maddening; watching my grandson enjoy my birthday cheesecake was PRICELESS; the delight in moms’ eyes as she finished the last of it was just as priceless.

I have to admit, sleeping in sounded like an awesome way to start my birthday.  “Are you sure you’ll be OK if I wait to come in until a little later?” I asked mom.  Mom assured me she would be fine and would call if she needed anything before saying, “I’m sure toothache girl will be in at 5 to make me use the bedpan”.  Huh?  (we didn't know her name, but had called the aide "toothache girl" ever since she had informed mom that she knew what kind of pain mom was in because of her toothache).

When I questioned mom about using the bedpan rather than the commode, she told me that when this particular aide worked she always made her use the bedpan AND she had woken mom up the past two mornings so mom could “try” to go.  “It’s OK, it’s just hard to get back to sleep”, mom was resigned to it being the way things were.

“Why does she wake you to use the restroom?” I wanted to know, “have you had accidents?”  My mother assured me she had not had any accidents and the reason the aide gave her for waking her was that the aide was leaving early and there would be no one there to help for a “couple hours”.  WHAT?

Obviously, it was too late that night to talk to the director, so I mentioned to the nurse on my way out of the facility that I was not happy that my mother was being inconvenienced because an aide had “other commitments” and I was concerned that there wouldn't be “anyone to help for a couple of hours”; he didn't understand why I was upset.  I didn't understand why this was happening and he couldn't explain it.

On August 28^th, 2013, I opened my eyes and squinted at the clock; it was just after 7:30am.  “Happy birthday to me”, I said to myself as I drug butt out of bed and got ready to head to the SNF.  I knew it was too late to save my mother from the indignity of the bedpan that morning, but I planned on being perched on the bench outside of the director’s office when she arrived.

Of course, the director feigned the proper amount of disbelief regarding the problem and was adamant that mom would not be woken to use a bedpan “at that hour”.  “Or any other hour”, I reminded her that mom was still able to transfer with assistance and that I expected her to have that assistance when she said it was time; not when someone else decided she should be ready.

Knowing I was fighting a futile battle, I left the bedpan incident to rest and headed to moms room; at least toothache girl wouldn't be back before I got mom out of there.  It hated that I would be taking her out of the Skilled Nursing Facility and right back to the hospital instead of home; just thinking about mom having to have another surgery annoyed me all over again.  Unfortunately, this hadn't been the first time mom had been further compromised by incompetence, arrogance, ignorance and/or negligence; I could only pray it had been the last.

It seemed no matter how many times I attempted to explain moms’ fragility to various medical professionals (doctors; nurses; CNA’s; therapists; etc.), I was always met with a condescending look or comment.  It wasn't that I thought they were ALL incompetent; my mothers’ conditions were very complex and her body was extremely fragile.  I just don’t understand why the “whole person” is not taken in to account when providing care.

Many times when I would try to explain some of the nuances of moms’ rheumatoid disease, I would hear about their knowledge and/or experience with “arthritis”.  It’s obvious that many people don’t understand the ramifications and/or the systemic effects of RA, or that OA (while still very painful, I’m sure) is not quite the same.

http://www.diffen.com/difference/Osteoarthritis_vs_Rheumatoid_Arthritis

Fortunately, and interestingly (at least to me), since she had been on the antibiotics that were prescribed to treat the Mycobacterium Avium Infection, moms’ RA had not flared; her lungs seemed to be clearing some; and, in spite of the pending “urgent” surgery and again the possibility of losing her leg, her spirits were good and her faith in God was solid.

Unfortunately, the advanced stage of moms’ Rheumatoid Disease came with other

complications.  Even when she wasn't in a flare, moms’ crippled hands made it difficult for her to hold things and impossible to open things; the deformities in her feet made it painful to stand; her “good” knee, as well as her shoulders; wrists; hips and ankles made a grinding sound every time she moved; and a good day was any day that her pain could be brought down to a 3 on the pain scale.  Of course, she has lived with RA for 50+ years, so a “3” for mom would probably be a twelve for me.

As I sat with my mom that morning and in to the early afternoon, I wondered if there had been something, anything, I could have done to alter the course we seemed to now be on.  Maybe, if I hadn't been such a brat when I was a teenager and not caused my mother so much stress, she would have had fewer flares resulting in less overall damage.  Maybe, if I hadn't been such an accident prone child moms’ stress level wouldn't have been so high.  I know she was diagnosed around the time she was pregnant with me, so maybe I caused this horrible disease in my mother.  I didn't voice any of these ridiculous thoughts to my mother; my despair would only be another burden for her.

By the time I returned to the hotel I was feeling pretty depressed and very alone.  As I

pulled in to a parking space, a voice in my head reminded me I was never alone; I sat in my car and prayed.  Another voice reminded me the course we were on was, somehow, the road we were intended to travel; that I was not powerful enough to have in any way altered the course that God intended.  I was feeling better by the time I inserted the key in to my hotel room lock; not so alone.

The next thing I felt was sheer panic as I stepped in to my hotel room.  Someone was (or recently had been) in my room; something was different, I could feel it.  I glanced toward the counter in the small kitchenette hoping to spot something I could use as a weapon in case someone was hiding in the bedroom or the bathroom.  Deciding a butter knife probably wouldn't be an effective weapon, I thought maybe the best course of action was to back out of the room and get help at the front desk.

As I backed out as slowly and as quietly as possible, I scanned the room looking for

something out of place.  I had almost pulled the door closed when my sight landed on something that certainly hadn't been there when I left that morning.  I just stood there staring; wanting to know who had left it and how they got in.  I nearly jumped out of my skin when my cell phone rang in my hand.

“Hi mom, Happy Birthday!” my younger daughters’ voice made me relax a little.  I stepped quickly out in the hall and closed the door as quietly as I could before saying “Thank you, honey”.  I was halfway down the hall toward the elevator and was getting ready to tell my daughter about the mystery in my room when she asked, “Did you get the flowers we sent”?

I stopped in my tracks; mystery solved; no need to alert the authorities!  Sure glad she called before I got downstairs!  I could just picture myself explaining that someone had broken in to my room and left me flowers; talk about priceless!