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Sunday, September 29, 2013

The Contingency Plan If you're "just tuning in" this post may leave you wondering what the heck I am rambling about, I hope you take the time to go back and review my earlier posts so you can catch up with our story.
I very much appreciate your thoughts and comments.

The Contingency Plan.

I had slept very little the night before and was certainly feeling it on the morning of April 27th, 2013. Mom had been awake several times during the night.  We had been slowly but steadily cutting back on the narcotics she had been taking; each reduction resulted in a couple nights of very fitful sleep for mom.  The truth is, my lack of sleep had very little to do with the round the clock duties involved in caring for my mother. I was already awake each time she called; I was formulating the contingency plan.

Of course I am always very much aware of mom; I generally am listening to her every move through the baby monitors I have set up in the house, but there was much more on my mind that night.  My thoughts bounced around like a super ball; my emotions were equally as volatile.

Although I was thrilled about my daughter’s wedding in a few hours, I was also a little melancholy about it.  I kept picturing her as a baby; a little girl; a teenager; a beautiful young lady and today a bride.  My mind was displaying images like a slide show; I couldn't shift my attention away from the memories.  The visions of my daughter at various stages of her life warmed my heart; tears leaked from my eyes.

I also had tears in my eyes as I was leaving my mother for the day.  I knew I didn't need to worry; my sister would be there to sit with mom, but I couldn't help it.  Rationally, I know MY WAY isn't the only way, but it’s the way mom's use to; it works.  Unfortunately, I'm not always rational.

I think I may have mentioned once or twice that I am just a wee bit of a control freak; that day was no exception.  I tend to get frustrated when people don’t instinctively know what I need and when I need it; I just expect people to see what needs to be done and do it. Boy that sounds a lot worse in writing than it did in my head; maybe I do need counseling so I can analyze those feelings, huh?

I also have a tendency to over analyze things and try to plan for every possible contingency; I generally have a contingency in place for my contingencies.  It annoys me when others don’t see the need for my playbook; my playbook probably annoys them just as much.  Years ago, while on a family vacation, my younger sister had hit the nail right on the head when she said, “The reason we’re all so relaxed is because we know you’ll do the worrying for us”, or something to that effect.

I thought about my sisters statement a lot that morning as I ran to the pharmacy; the grocery store; the vitamin store and then set about making sure mom had everything she might need while I was away (more than once I had to remind myself I would be gone for less than twelve hours).  Before I left I fixed moms lunch and made sure her medications were set out.  I also set clothes out for mom to wear to the wedding; it wasn't looking promising, but I still hoped she’d be able to attend.

What was looking promising was the weather; it had been risky planning an outdoor affair this time of year in Colorado.  With the sun shining brightly, my daughter and I arrived at the venue right at noon; by four thirty we were ready for show time.

With nothing left to do but wait, I started worrying and wondering about mom.  I thought maybe I should call my sister to make sure everything was OK.  What if they had trouble getting mom in my car?  I hoped they were careful getting her down the stairs.  Then I reminded myself that my daughter was getting married and I needed to focus; mom was OK.  Even if she didn't make it to the wedding, my sister would always make sure mom was OK.

I jumped when my phone rang; I panicked when I saw my sisters’ number register on the caller ID.  “Never mind, I found it”, my sister said as I saw my car pull in.  I looked to the sky and thanked The Lord for bringing my mother to the wedding; for helping her achieve at least this one goal.

With no time to greet them in person (it was time to be seated!), I gave my sister parking instructions, which would allow mom to witness my daughter’s wedding from the car.  I felt elated as I took my seat in the front row and waited for the procession to begin.

My future son-in-law looked stunning in his tuxedo while he waited for his bride with obvious anticipation.

 My other son-in-law (also very handsome) brought a smile to my face as I watched him entertain my grandson until it was time to send him down the aisle.

I was pleased at how good my older daughter looked at almost eight months pregnant; she was a wonderful mother and a beautiful maid of honor.

My son was charming and as good looking as ever; I couldn't be prouder of the young man he had become.

I had a lump in my throat as my husband walked our daughter down the aisle; He was handsome and confident as he gave our princess to her prince and he didn't step on the dress!

As I gazed at the 140+/- family and friends that had gathered to honor this marriage, including my mother, I felt truly blessed; for the first time in months, I felt relaxed.

hadn't really believed my mother would be able to join us and if she did I thought she would probably want someone to take her home right after the “I do’s”; sometimes it’s nice to be wrong!  Although she didn't have the strength to manage the entire evening, mom was able to stay for pictures and she wasn't about to miss the prime rib!

The venue really wasn't handicap accessible, but with concessions from the owner in regards to letting my sister park in a “no parking” zone where mom could see the happy couple from the car and fixing mom a plate before dinner was served so she could take her meds, it had worked out as well as we could have hoped.  My mom was smiling almost as big as my daughter was; they both had accomplished great things that day; they had both reached a milestone.

My daughter was radiant as she married the man of her dreams.

My mother had accomplished the first of several goals she had set after falling ill the year before and for the first time in months felt like adding to her “bucket list”.

Even I had accomplished something some pretty astonishing feats; I had relaxed and enjoyed the evening; I had delegated without micro-managing; I had graciously accepted help without feeling guilty.

Oh, and, by the way, we needed that contingency for the contingency plan!

Thursday, September 26, 2013

....No Rest for the Wicked... If you're "just tuning in" this post may leave you wondering what the heck I am rambling about, I hope you take the time to go back and review my earlier posts so you can catch up with our story.             I very much appreciate your thoughts and comments.

Ring bearer (my grandson)
Flower girl (my 3rd cousin)
There was no rest.......

On Wednesday afternoon, April 24th, 2013, I brought mom home from the hospital for the eighth time in the past year.  48 hours later, while my sister sat with mom, I went to watch the rehearsal.  I was enjoying my family, the fresh air and beautiful setting where my daughter would be married the next day; I tried not to worry about mom or the many things I was afraid still needed to be done before the bridal party; family and close friends arrived for dinner.

Coasters/party favors
Seeing the happiness in my daughters’ eyes brought tears to my own.  She was going to be a beautiful bride; I still hoped my mother would be able to witness it, but didn't think it would be possible.  Mom was weak from being so sick earlier in the week; still she was excited about the rehearsal dinner.  Since it was at her house and she was home, at least mom wouldn't miss the party.

I had fretted about this dinner for weeks.  First I was worried the weather would be bad; it wasn't.  I spent a good deal of time worrying about who would sit with mom and how I would find time to clean the patio; my sister did it.  I wondered how I would get the tables & chairs hauled over; my brother made sure they were delivered and set up.  I had worried about what we would serve, when I would have time to cook and what we would have for desert; my husband and kids took care of it.  I was running out of things to worry about, but of course I am resourceful!

I hoped it wouldn't be too much on mom having that many people around; twenty people was ten times more than were usually there.  I was afraid
mom would get depressed about not feeling well enough to attend the
wedding.  I tried to remember if I had refilled her prescriptions; or made sure mom had plenty of Zofran.  I just couldn't stop myself from thinking about what I would do if mom couldn't handle the chaos that was about to ensue.  See, I can always find something to worry about!

Mom had promised she would lie down in her room and watch TV if it got to be too much for her; which is where she was when twenty some people descended on the house.  Mom was able to get up long enough eat a small amount, say hi to the kids and meet my soon to be son-in-laws family before needing to lie back down.

The increased fatigue mom seemed to experience after each hospital stay was frightening.  I was use to mom resting in the afternoons; she had done that my whole life, it was necessary.

The toll moms' Rheumatoid Arthritis had taken on her life had required frequent periods of “down time” since she was a young mother; over the past year and a half moms’ down times had become much more frequent and longer in duration.  The many medications mom had been treated with over the past fifty years had provided periods of intermittent relief; that relief had not come without risks.

For years I had purposely tuned out the commercials about the various drugs used to treat RA and their possible side effects.  You know the commercials I’m talking about, right?

The commercials that show pictures of bicycling, carefree seniors or young mothers playing football with their children or some other such scene that makes you forget about all the horrible other things you might have to deal with; the ones in small print on the bottom of the screen or spoken so fast you couldn't make a list if you had to.  Since they always prefaced it saying there were only a small percentage of people who had experienced the devastating life altering results they quickly glossed over, I chose not to acknowledge them.

I had mistakenly believed moms’ Rheumatologist and Internist would have the necessary knowledge of the drugs they were administering and the competence necessary to recognize the symptoms of the associated risks; I had believed they had her best interests at heart; there was a time I believed they cared.  One of my biggest regrets will always be that I didn't realize sooner how wrong I was.  I hate when things go wrong.

As wrong as so many things seemed to be going, my daughter had found Mr. Right and even if mom couldn't get out to the patio to socialize, I really needed to.  I was feeling pretty lucky that my sister was able to stay and look after mom that evening; it allowed me to join in the festivities.

It was quite a treat to meet my daughters’ soon to be in-laws (glad they weren't outlaws!); their down to earth easiness was refreshing and fun.

I also very much enjoyed watching my grown children and their friends reminisce; some of those stories would have given me a heart attack if I had known about them when they happened!

The highlight of my evening, however, was the time I spent with my grandson; that little boy lifts my spirits higher than I ever thought possible!

After the party was over and everyone was gone, something else happened that I didn't think was possible.  I had been worrying all evening because mom seemed to be so fatigued, which she was; I was convinced that all chances of her being able to attend my daughter’s wedding had been erased with her most recent stay in the hospital.

Imagine my surprise when, as I was helping mom get ready for bed, she said to me, “I think maybe I better go ahead and wear the brace to the wedding".  Evidently the extra rest she had gotten had rejuvenated her.

Rest was not something I experienced that night.  My mind had shifted in to high gear and was turning corners faster than I could process the thoughts.  I focused on what tomorrow would bring and tried not to let my imagination spin out of control.

My daughter and her fiancé had done an amazing job planning and executing their special day; my only task was to be there, and, of course, to make sure the contingency plan for mom would run smoothly.

Being an insomniac anyway, those two tasks kept my mind occupied and my eyes open for hours after I should have been sleeping.

Stupid insomnia!

I remember when I was young and my mother would say, “There’s no rest for the wicked and the righteous don’t need any”.  She told me it was up to me to figure out which I was.  I wonder if she knew then I would lay awake at night, some 40+ years later, pondering that very thing.
Well, I’m obviously not righteous; I’m not without guilt or sin and I certainly do need sleep.

I definitely fall more in to the “wicked” category, I must; there was no rest!

Sunday, September 22, 2013

Costing Valuable Time If you're "just tuning in" this post may leave you wondering what the heck I am rambling about, I hope you take the time to go back and review my earlier posts so you can catch up with our story.  I very much appreciate your thoughts and comments!


My sister and I had moved to the foot of moms’ bed allowing the nurse room to administer another dose of anti nausea medicine through the precariously placed IV.  Moms’ veins were so fragile it had taken several attempts to get the IV started; there was concern if it became dislodged from the back of her wrist, they would not be able to start another one.  We were all holding our breath as the nurse sterilized the cap, other than the beeping from the various machines monitoring mom, the room was silent.

The silence was broken by loud rumbling.  We all looked at each other as the sound returned.    We were all staring at mom as she started heaving again; her stomach sounded like a small volcano erupting.  Evidently we had all become complacent; not one of us handed mom the blue bag. Luckily the IV did not dislodge as mom jerked her hand away from the nurse as she grabbed for the emesis bag. This time she NEEDED the bag!  

For the next half hour (which seemed like an eternity) we handed mom bag after bag; each one held a fair amount of what looked like old coffee grounds.  I knew the implications of this new development could be as simple as the aspirin regimen she had been on or it could be much more complicated; much more serious.  Moms’ stomach finally quit thundering, she laid her head back and closed her eyes; she was exhausted.

With mom now sleeping and the nurse monitoring her closely, I consulted with the voices in my head and decided I better get some things done while I had the chance.  I needed to sleep, but I had a "to do" list a mile long.

After running a number of errands, I met up with my daughter.  We visited the venue where she would be married in just four days, made notes on what still needed to be done and a list of items needed for the rehearsal dinner.  I dropped my daughter off and headed for the grocery store.

While I was putting away the groceries, I called the ladies from the church who had offered to sit with mom on Saturday. I didn't think mom would be home anytime soon.  “Let us know if anything changes”, they told me they would keep their calendar open “just in case”.  I made several other calls as I stared in to the refrigerator, wishing something sounded good; nothing did.  I was glad the calls were done; I didn't want to talk to anyone else tonight.

I had no sooner set my phone on the table before it was ringing again.  I was startled to see moms’ cell phone number pop up on my caller ID.  Who would be using her phone?  In the seconds it took me to accept that call my mind conjured up a half dozen scenarios of why someone would be calling from moms’ phone; none of them surprised me as much as the voice on the other end of that call.

“Hi”, my mother sounded weak, but cheery as she continued, “How are you?”  I marveled at my mothers’ character; even while lying in a hospital bed she worried about everybody else.

I was amazed at how much better mom looked when I arrived at the hospital.  It was like night and day.  When I had left a few hours earlier, I wasn't sure mom was going to make it through the day; what a difference a few hours had made.  “How are you doing?” I asked as I stood by her bed.  Mom told me, since the nausea had passed and she had gotten a couple hours sleep, she felt pretty good.

“I’m sorry, I know this is messing up your week”, my mother looked so sad, “How many people are coming to dinner Friday?” she wanted to know.  I held back the tears when mom smiled and said, “I almost made one of my goals”.  I sounded hollow and neither of us believed me when I told her there was still a chance she would make it to the wedding.  I asked mom if she wanted to pray; she did.
After our collective prayer, we both fell in to silent prayer.  I continued praying for God to comfort our family and guide us through whatever was to come.  I kissed mom goodnight and added a number of post scripts to my prayer as I drove home; I added more as I drifted in to a sound sleep. 

With renewed energy and a feeling of hope, I woke nearly twelve hours later.  Other than the dog prancing around and giving me the sad eye look to let me know I had slept through her usual breakfast time, the house was quiet.  It was like I had been offered a morning of solitude; time to gather my thoughts.  It also gave me time to formulate a contingency plan.  At this point, I had no idea if mom would be home or not but I needed to make sure I was prepared either way.

Regardless of moms’ condition, I had to be a smiling Mother of the Bride in three days; a gracious hostess for the rehearsal dinner in two.  YIKES!  Luckily, my imagination didn't have time to shift in to over drive before the phone rang; afterward it was turbo charged!

I hate when “UNKNOWN” shows up on the caller ID; either someone is trying to sell me something or it’s from the hospital (which was much less likely).  I wasn't going to buy anything and I would be to the hospital within a couple hours; should I answer it?  Or not?  The voices in my head argued too long and the phone stopped ringing before I had made a decision.

OK, admittedly, the lack of making a decision was a decision in and of itself.  Unfortunately, the lack of decision meant now I had to make another decision.

Should I continue with the errands I was going to run before the phone rang; errands that had to be taken care of?  Or, should I go check on mom first in case the call was from or about her.  I didn't remember putting it to a vote, but the voices weighed in anyway.

I had a talk with the “voices” as I abandoned the myriad of errands and drove straight to the hospital. They had to quit interfering with my decision making abilities; the voices were COSTING VALUABLE TIME!

Monday, September 16, 2013

When am I going to learn......? For anyone "just tuning in" this post may leave you wondering what the heck I am rambling about, I hope you take the time to go back and review my earlier posts so you can catch up with our story. I thank you all in advance for your thoughts and comments!    For anyone who has been along for the whole wild ride - Thank you!

When am I going to learn......?

It was near 7:00 PM, April 22nd, 2013 when I followed the ambulance down the street to the other hospital.  We had already spent a number of hours in one ER that day before mom was dismissed.  I was scared.  I was angry.  I was emotional.   I was completely exhausted; I could only imagine what mom felt like.

She had been retching for hours; mom was dizzy; her blood pressure was dangerously high.  She needed medical attention.  My mothers’ fifty year history of Rheumatoid Arthritis and the complications of many years of the “latest and greatest” drug therapies had taken its toll on her; mom had experienced nearly every possible complication associated with RA.  I hoped the ER doctor here would show an interest in my mothers' impressive medical history.

I had compiled a briefcase full of moms’ medical records, which was no easy feat.  I had also done a whole lot of research on the many afflictions plaguing my mother.  I shared moms’ past medical history, as well as the most recent discharge summary, with the attending physician at the second ER.  Although the doctor didn't discount the earlier diagnosis, he had some questions, “Did they do any other tests”.  They hadn't.  Since the first hospital had done a CT scan, blood tests and a visual evaluation to rule out stroke, but not the appropriate tests to diagnose BPPV; mom was taken for an MRI.

While mom was undergoing the MRI, the doctor reviewed her health history; he was concerned.  “Regardless of the test results” the doctor said, “your moms’ blood pressure is reason for concern”.  I felt my very tense neck & shoulders relax some just knowing he cared, his compassion was apparent.  The doctor continued, “I think it would be a good idea for us to keep her for observation”.  He explained he didn't have reason to “admit” her (per medicare guidelines).  I hoped he was as competent as he seemed to be.

I knew there was a difference (a financial impact) between observation and admittance, but I didn't know exactly what the difference was; I didn't care.  Mom needed more care than I could provide right then and I needed sleep!
I waited with mom until she was settled in a room and I felt comfortable with her care.  I introduced myself to the nurse and told her of moms’ recent back surgery; pending knee surgery and a host of other details.  I couldn't rely on the charted information to fully relay the complexity of moms’ fragile condition.  The obvious concern, compassion and competence shown by that nurse, the entire ER and inpatient staff was comforting to me; I thought I might be able to get some sleep while mom was being observed.

After being awake for nearly 24 hours and in hospitals for around sixteen of those hours, I was exhausted.  It was close to 2:00 AM on April 23 when I laid my head down.  I desperately needed sleep, but my mind would not shut down; I had so much to do.  It was almost 4:00 AM the last time I looked at the clock; I fell asleep wondering how I was going to manage.

I don’t know if one can get PTSD from bad experiences in the health care industry, but I suspect any traumatic event could cause it; I also suspect that I had fallen victim to it.  My skepticism of the medical community consumed me.  There had been too many errors; too much overlooked and written off to her age and/or her Rheumatoid Arthritis.  Even though mom was not currently under the care of the same doctors and hospital where she had nearly died several times, I couldn't relax.  My nightmares were terrifying; one more misdiagnosis (or missed diagnosis) could have devastating results.  I woke with feeling of urgency at 6:30 AM.
By 7:00 AM I had brought in the paper, fed the dog, let the cat in, and was ready to return to the hospital.  I couldn't erase the picture of mom from my mind; she had looked so bad.  I had to check on mom before I was going to be able to concentrate on anything else.  My daughter was getting married in four days; I needed to concentrate on something else!

When I returned to the hospital, I was pleased to see how attentive the nurse was.  At this point “being attentive” simply meant making sure the blue vomit bag was where mom could reach it.  Mom was still nauseous and had been experiencing dry heaves for going on forty hours.  The dizziness had not subsided; her blood pressure was still bordering emergent; moms’ eyes were sunken and dark.  I had a pit in my stomach as I imagined having to plan a funeral the same week as my daughter’s wedding.  All at once I knew that a heart really could break; the pain was real.

The pain I saw in my mothers’ eyes was reminiscent of the months before her spine surgery.  Even though I only planned to be gone a few hours, I felt guilty about leaving her when she was so sick; I felt like I was abandoning my mother.  With assurance from the doctor, nurses and social worker that mom would be closely monitored until it was safe to send her home, as well as my sister stationed by my mother’s side, who would call me if anything changed, I left the hospital.  I had missed so much in the planning of her wedding; I needed to spend this time with my daughter.

My daughters’ happiness and excitement was contagious.  A long lunch was just what I needed.  OK, it was a quick lunch; we still had shopping to do!  With the last of the centerpiece supplies purchased and feeling like I might just make it through the week regardless of what happened, I dropped my daughter off and returned to the hospital; nothing had changed, except maybe mom looked worse.

Mom was not getting any better; none of the medications were working to control her nausea, blood pressure or dizziness and nobody seemed to know what was really causing it or what to do about it.

Could this get any worse?

When am I going to learn to stop asking that?

Things were about to get ugly!