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Tuesday, December 10, 2013

NOT A Good 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.
For anyone who has been along for the whole wild ride - Thank you!

Not A Good Time.......

On June 4th, 2013 as we began our 5+/- hour drive home, mom seemed to be experiencing some pretty severe withdrawal symptoms from eliminating the morphine.  We had been decreasing in 15mg increments for the past couple of months, with mom experiencing some minor withdrawal symptoms with each reduction.  It wasn't until the final 15mg was eliminated that the symptoms became what I would term as “severe”.  In case you are wondering, this is NOT a good time!

With each prior reduction mom had been weepy and fairly fatigued, but had not experienced much more.  Also, with each prior reduction, the withdrawal symptoms had not been noticeable for 2-3 days following the reduction and had generally lasted 2-3 days once they were evident.  Drawing from those earlier experiences of titration I had mistakenly believed that final reduction (which constituted elimination) of MS Contin would be a similar experience.  Boy was I wrong!

An hour in to our trip I was still wondering if I had done the right thing in allowing mom to travel without her back brace.  She didn't seem to be in pain (at least from her back), but I was concerned about what might happen.  What if we got in to an accident?  What if someone else got in to an accident causing our trip to be much longer?  What if…………….  By the second hour of our trip I was thanking God that we had forgone the brace for the day.

Our drive usually consisted of one carefully planned bathroom stop just over half way.  During our many adventures we had determined that particular stop to be the best of the many options.  Unfortunately, this trip we would discover many less desirable stops – I think we may have stopped at every bathroom on that 250-mile stretch of highway.  Moms’ nausea and diarrhea seemed unstoppable and I was getting worried.  I know it seems unlikely, but I was also getting hungry!

Nearly three hours in to our trip mom seemed to be feeling some better; we hadn't had to stop in nearly 50 miles!  With her dozing peacefully in the passenger seat I took the opportunity to drive thru a popular burger joint and grabbed a hamburger and some fries.  Mom didn't feel like eating, but assured me she didn't mind if I did.  I pulled to the back of the building, unwrapped my yummy smelling burger and took a big bite just as mom swung the door open and began vomiting.  My burger did not seem quite as appetizing anymore.  With mom apologizing and me assuring her everything was fine I managed to finish the burger before going around the car to see how much of a mess I had to clean up before we could continue.

I was astounded when I got to the passenger side of the car that mom had managed to hang far enough out of the car that there was no mess – again I thanked God that she wasn't wearing the brace.  I was terrified at the amount of emesis puddled on the ground.  “Aren't you glad I didn't wear the brace?” mom asked through glazed eyes.  I managed to find something to scoop dirt with and covered the mess to make sure no one stepped in it.  I secured moms seat-belt and we got back on the highway with mom seeming better, but very tired.  We managed to only have to stop twice more before reaching home.

Not only had the withdrawal symptoms been much more severe with the elimination of the morphine, they also lasted much longer.  For nearly a week and a half after returning home mom continued to experience many unpleasant symptoms.  Mom felt hopeless; I felt helpless; we were both exhausted.

The house became eerily quiet during those ten days.  It seemed there was no topic we could discuss without mom being near tears.  Simple things like telling her I was going to make myself a sandwich and asking her what she would like to eat would elicit a tearful response of, “I don’t care, but I DON’T want a sandwich” (as if she didn’t know that I would fix her anything she wanted).  Consequently our conversations were kept to a minimum of necessary topics.  Mom busied herself with any and every puzzle she was able to get her hands on and I had plenty to do with the enormous amounts of laundry that was being created; cooking meals; scheduling appointments; and preparing for our next trip – we would be home just under two weeks before we had to return for moms pre-op appointments.  Unfortunately, even the lack of conversation seemed to unnerve mom.

With a crack in her voice mom would say “I wish I could help you”.  It broke my heart to see her like this.  I was pretty sure it was depression as a result of withdrawal, but I constantly worried that my mother would fall in to a deep depression that she wouldn't recover from; that she would lose her will to live.  Her depression was consuming ME.  The few hours of sleep I was getting each night were invaded by nightmares and my days were spent wasting a lot of energy being angry as I recounted each injustice I felt my mother had suffered at the hands of doctors she had trusted.  The anger wasn't getting me anywhere except for in prison when I went to sleep.

Although I will never forget the horror of the past year, I began making a conscious effort to forgive.  I realize forgiveness will not change the past, but it may help me be better equipped to deal with the future.  Unfortunately, I had to test this theory before we had to make the return trip for moms’ pre-op appointments.

Although I wasn't happy about having to take mom for her appointment with her primary care doctor who had basically written my mother off when all this started, I was looking forward to NOT having to beg him for the correct dosages of morphine for mom.  I guess the forgiveness thing must have helped because I didn't feel anxious and I didn't spend the entire appointment having to convince myself that ripping his face off was not a good idea.  In fact, maybe because I had quit depending on him to do right by mom, I felt strangely at ease.  I didn't even bother to correct him when he, once again, asked mom about her diabetes WHICH SHE DOES NOT HAVE!  I also didn't bother to point out that we had successfully (without his help) managed to wean mom off all the narcotics and, maybe because I had lowered my expectations of him, I wasn't even annoyed that he didn't asked about her recent back surgery.  I did, however, almost lose it completely when he told us (not for the first time) how lucky mom was to be alive and acted like he thought he was a hero – luckily the thought in my head did not escape my mouth!

It was absolutely NO thanks to moms’ primary care doctor or her RA doctor that she had managed to live through the horror of the prior year.  In fact, in my humble opinion, much of what mom had to endure could have been avoided.  Fortunately for them, mom had lived and my focus was on her and regaining some quality of life for her.

Had mom not lived, I am quite certain, those two doctors would have been my focus and I am positive it would not have been what they would call a “good time”.

Thursday, November 21, 2013

Stick to the routine 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.
For anyone who has been along for the whole wild ride - Thank you!

Stick to the routine

I woke feeling rushed at 6:00 AM on May 30th, 2013.  Mom’s appointment for her culture wasn't until 9:15, but it was a long way across town in rush hour traffic and let’s face it, there was no “rush” about it!  Since mom’s back surgery, some things had gotten much easier and quicker to get around in the mornings; some things were more cumbersome and took longer.  The pain in her spine was all but gone and she was almost completely off of the massive doses of morphine she had been on just a few weeks prior.  Still, mom had a morning ritual that would upset her whole day if it wasn't at least somewhat followed.  I do my best to stick to the routine.

By 6:15 AM I was in the hotel lobby gathering several items that mom “might” want to munch on and a morning news paper; her coffee had already been made and was sitting in front of her at the table.  Although the spine surgeon had told mom she could start to wean herself from wearing the back brace that she so despised, she had found that her back became tired very quickly without it – those muscles simply hadn't been used for quite some time – so, even though it was very cumbersome, we took the time to snug her into both the back and the leg braces.  At 7:45 AM we were in the car and on our way for the culture that would determine how we would spend our next several months.
The results of the culture and the amount of tissue damage would determine if the knee could be resected and replaced during the same surgery or if it would require two separate surgeries; one to resect and another 6-8 weeks after to replace.  Of course we were hopeful it could be done in a single surgery, but I don’t think either of us were very optimistic.  With the cultures drawn and surgery scheduled for July 12, 2013 with only a 2% chance for a single surgery, we were back in the car heading to the hotel by 9:30 AM.

By 10:30 AM I had gotten mom a snack, helped her to the bathroom, and got her laid down.  With the promise of bringing something back for lunch in a couple hours I left mom at the hotel.  I had made sure her cell phone, water and any medicine she might need while I was gone were accessible; I still worried about mom walking on that knee even just to the bathroom, so I placed the bedside commode at the foot of the bed.  I had to believe mom would be OK alone for a couple hours; she had to be.  I tried not to speed as I looked at the clock and calculated the time it would take to get to the hospital; I prayed I would make it on time.

I guess I should have been more specific with that prayer - I should have prayed that I would make it on time to see my daughter before they took her to surgery; I didn't.  I did, however, make it on time to greet my new granddaughter when they brought her in to the nursery.  As I adored this new baby girl, I marveled at how many miracles God had wrapped in this child; how many prayers had been answered with her birth.

My daughter was doing fine; the baby was healthy; I had been able to be there; mom had lived to meet the newest of her great grandchildren (achieving the second of her goals) – these had all been prayers that I had spoken in the past few months.

Within hours after my granddaughter was born I had taken lunch to mom and we returned to the hospital for a proper introduction.  Mom beamed and with tears in her eyes, she said “I made it this far”.  Both mom and my daughter wore out pretty quickly and I took mom back to the hotel to allow them both some time to rest.  We had decided to stay a couple extra days to enjoy the baby and make sure everybody was doing well before heading back home.

On the way back to the hotel I was chatting about the things we needed to do in the next six weeks before moms’ surgery; I could tell something was on moms’ mind and it was making me jittery that she wasn't saying much.  Mom remained fairly quiet all evening and nothing I seemed to say or do inspired her to open up.  I knew from past experience there was either something weighing heavy on her mind or she was not feeling well; I really hoped it was the former.

Deciding there was little I could do to change moms’ mood or demeanor, I spent the next two days with my daughter as much as I possibly could.  Mom seemed to fair OK at the hotel and I checked in often; she was still quiet, but did not seem to be ill.  I knew she would share whatever was on her mind when she was ready, not before.

On Sunday evening June 2, 2013 mom was ready to share.  Shorty after she had taken her evening medications, mom turned to me and asked, “When did we do the last morphine reduction”?  BINGO!  That’s why mom had been so quiet; she had missed her 3rd goal – to be off of the morphine by the first of June.

I explained to her that I had decided to not do the final reduction (which entailed the elimination) of the morphine while we were traveling as there could be “unpleasant” side effects, but that if she thought she was ready then the dose she just took could constitute her last dose; I really hoped I didn't regret that decision.  It seemed amazing that just three months ago she was taking 500-700mg a day of morphine.  On June 2nd she officially took her last 15mg of the mind numbing drug.

On June 3rd mom seemed fine as I headed out to see my daughter, son-in-law and the babies.  She still seemed OK, but not as perky when I returned and started packing for our trip back home.  On June 4th it was obvious mom wasn't feeling great, but she wasn't complaining as we headed across town and into the mountains towards home.  Luckily we at least made it over the passes (but still 2 ½ hours from home) before things got ugly.  Remember those “unpleasant” withdrawal symptoms I mentioned earlier?  I’ll never forget them!

There are a lot of things I’m sure I don’t know, but what I DO know is morphine withdrawals can make that 250 miles of highway seem a LOT longer!

Saturday, November 9, 2013

We Needed A Miracle 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.
For anyone who has been along for the whole wild ride - Thank you!

We Needed A Miracle

With my younger daughters’ wedding behind us and the first of the goals accomplished, our sites were set on what was to come.  The future held a lot of uncertainty for us; it also held a lot of hope and promise.  With absolutely no control over our collective futures, I reminded myself daily to “Let go and let God”; of course we all know that is sometimes easier said than done.   All I could do was follow the instructions the surgeon had given to mom and pray.  We needed a miracle.

Mom had to be off of the antibiotic for at least 2 weeks before the surgeon would culture her knee for infection, once that was done the surgery would be scheduled to remove the prosthetic knee that my mother had been sporting since 1987.  It was decided that mom would stop taking the Levoquin on May 6th 2013, which would more than prepare her system for the culture that would be drawn on May 30th.


 “Last time it was only a matter of days before you got sick and ended up back in the hospital”, the infectious disease doctor reminded mom, “I’d much rather you stop it on a Monday so I will be more readily available if there is a problem”.  I prayed hard that there wouldn't be a problem, but after mom stopped the antibiotic I was worried sick that there would be.

I also worried constantly about my daughter who was nearing the end of her second pregnancy and was starting to have some problems; her first pregnancy had resulted in an emergency C-Section, and a delightful baby boy.

I was still holding out hope for mom’s surgery to be scheduled just before my daughters’ baby was due to arrive, which was June 15th, 2013.  Since my daughter lived in the same city we traveled to for moms’ surgeons, I might have an opportunity to spend some time with my daughter and the baby while mom was in rehab.  My hopes were dashed when I received an email from the surgeon explaining that the surgery would likely be done six weeks after the cultures were drawn - which would make it the middle of July before the resection of her knee would be done.

On the 27th of May I was feeling disconcerted and out of sorts as we made our five hour trip for moms appointments on the 29th and 30th; I was heartbroken that I wouldn't be there when my granddaughter was born.  I was still trying to figure out a way that I could make another trip in two weeks when my daughter was due.  I didn't know who could take care of mom for more than a day or two if I left, I also knew I would worry about her endlessly and that wouldn't be a help to my daughter.

As we drove over the mountains I chatted with mom about possible scenarios of who could care for her while I was away.  We finally decided mom should just make the trip with me.  After all, there was no law that required us to have a doctor’s appointment to go; we could go for fun!  Besides, living long enough to meet her newest great granddaughter had been another of moms’ goals; it gave her something to focus on.  We had a plan!

Although I was pleased that mom had agreed to make the trip, something seemed to be nagging at me; I just knew we would not be traveling in another two weeks.  Something was wrong but I had no idea what it was.  I tried to put all the negativity out of my mind; I needed to focus on mom and the business at hand.  I didn't have time to give in to the tears that wanted to flow as I realized I would not be there on my daughters due date in mid June; the lump in my throat was so big it was painful.

I reminded myself to be thankful for what I had and felt some consolation that we would arrive with a full day to spare before the battery of appointments mom would have to endure.  The extra day would allow me some time to spend with my daughter, her husband and my grandson, which softened the blow that I wouldn't be there if my daughter needed me; that my granddaughter would likely be a full month old before I would meet her.

I prayed for a miracle.  I should qualify that, I prayed for ANOTHER miracle.  No, that’s not right either; I prayed for a LOT of miracles.

As we pulled in to the parking lot of the facility where moms first set of appointments were on the morning of the 29th of May, I thought it was a miracle we had made it in time.

As we finished the day’s appointments just under three hours later, I thought it had been a miracle that we had gotten through so quickly.

As we drove back across town through traffic, I realized it had been a miracle that mom seemed to be doing so well after quitting the antibiotic.

When we arrived back at the hotel I called my daughter to let her know we were done for the day and how things had gone.  She listened to my report of moms’ condition and the outcome of the days appointments before telling me her own news for the day.

With tears in my eyes I returned to the room to explain the new turn of events to my mother.  My daughters’ news would definitely change our plans.

“I don’t think we’re going to be able to go out to lunch after your appointment tomorrow, we’ll just grab something on the way back”, I knew mom would understand that I needed that time with my daughter; my mothers’ resilience and adaptability never ceased to amaze me.  I’m sure she might have been a little disappointed, but I had a plan to make it up to her!
As I lay in bed that night I prayed for yet another miracle.

I lost count of the many miracles The Lord had already blessed me with as I fell asleep that night.

Was it selfish of me to pray for more?

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!