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Sunday, August 10, 2014

I don't always like the answers

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!
Thanks for hanging with me!  I would very much appreciate your comments/ helps to know someone is out there!

I don't always like the answers

When I opened my eyes, at nearly 10:00am, on August 24th, 2013, I almost panicked before I remembered that my husband had left the hotel early to go have breakfast with mom; he would have called me if there had been a need for me to hurry to the SNF.  It felt good to not have to rush; to just lie there; to just relax.  As I lay there, I wondered how long it had been since I had actually slept in; I honestly didn't know the answer.

Since March of 2012 I had been up early each morning to take care of mom; even when she was in the hospital, I felt the need to be there almost immediately after opening my eyes to help mom with the things that seem to get overlooked (or ignored) by medical personnel; things that were important.

Other than when mom was in an Acute Rehab setting, getting help with basic things like brushing her teeth; washing her face; or even getting to the bathroom on time, were luxuries (without enough staff to afford them).  While it’s true, especially in the beginning of moms’ decline, these things could be very time consuming (she couldn't even hold a tooth brush, much less use it); in my mind, they are necessities, not luxuries.  The times I had questioned the lack of staff to accommodate the individual needs of each patient; I hadn't liked the answer.

I may be naive, but, it seems to me that it should be a requirement that EVERY medical facility (hospitals; nursing homes; skilled nursing facilities; rehab facilities; etc.) maintain a staff to patient ratio that allows for adequate personal hygiene.  And, yes, I've looked at both the state and federal regulations that state (in part):

7.3.1 Staff shall be sufficient in number to provide prompt assistance to persons needing or potentially needing assistance, considering individual needs such as the risk of accidents, hazards, or other untoward events. Staff shall provide such assistance. (and)
§ 483.30 Nursing services. The facility must have sufficient nursing staff to provide nursing and related services to attain or maintain the highest practicable physical, mental, and psychosocial well-being of each resident, as determined by resident assessments and individual plans of care.

In my opinion, both regulations are written in such a way that much is left to interpretation and open to manipulation.  I’m pretty certain “helping Mary brush teeth” was never written in to ANY individual plan of care, so does that mean there just isn't time?  Seriously, if a patient (who is unable to be completely self-sufficient) doesn't even get good oral hygiene, how can they say they will “attain or maintain the highest practicable…………well-being”?

Although I had slept in, I certainly didn't relax that Sunday morning.  I had spent an hour obsessing over the indignities my mother had suffered at the hands of medical professionals (I use the term loosely); the injustices I had witnessed and perceived; the cavalier attitudes of many providers; how it use to be; how it should be.  I had so many questions and very few answers.

Has it always been this way and I was just too removed to really see it?  Was I just as much to blame as the next person for what our medical society had become because it was easy to ignore and turn a blind eye to things that hadn't affected me personally?  I wish I knew the answers.  Yeah, I think obsessing pretty much covers it.

My obsessions carried over in to the shower as I thought about moms’ imminent surgery and the chances of them not being able to save the leg; amputation had been discussed a number of times over the past year and a half and I hoped, with this new set of problems, that wasn't the only answer.

I also thought about all the past surgeries; what she had gone through; the preparation; the instructions.  Uh-oh, had the SNF received the instructions?  Did they know what the preparation entailed?  It’s always better to obsess over something you might be able to do something about, don’t you think?

As soon as I arrived at the SNF I went looking for moms’ nurse and make sure things
were on track.  “Yes, we have them”, the nurse said as she quickly flipped through moms’ chart.  I thanked her for her help and started to head to the dining room to meet mom and Mark for lunch when the nurse smiled and added, “As soon as our doctor gets back on Wednesday, we can implement them”.  Excuse me?! I really didn't like that answer.

wasn't sure I had heard her right and I couldn't believe we were going to do this dance again.  “What?” I asked incredulously.  Some of moms’ medications should have been stopped the day before and some of them were to be stopped Monday morning, there was no way I was going to wait until Wednesday to address this.  Someone needed to answer to this NOW.

I can tell you that there weren't enough hours in a day for that nurse to have managed to have a minimum of two hours per patient that day; at least a third of her day was spent dealing with me.  It was well after 5:00pm by the time a PA finally came in and signed the orders.  One would think after all that, the problem would be taken care of; I wasn't so sure.

As I was helping mom get ready for bed that evening, I alerted her to be on the look-out for the discontinued medications; we went through her list of meds and discussed which ones she should not take before surgery.  Luckily, although my mother has certainly dealt with her share of physical disabilities, with the infections under control and her no longer taking morphine for pain, her mind was still pretty sharp.

For two days after my discussion with the nurse and the PA signing off on the orders, they were still trying to give mom the medications that were to be discontinued; mom politely refused them.  Mom also had to remind therapists that she was now NWB over and over again; couldn't they read their notes?  I couldn't wait to get mom out of there, even if it was to go back to the hospital!  How sad is that?

Sadness seemed to be the theme for me for the next few days.  I was sad when my husband left to go back home; I was sad I hadn't gotten to go back home; I was sad that mom was facing another surgery that could cost her leg; I was just sad.  I needed something to pull me out of this funk; something to lighten my mood and comfort my heart.  Wait!  I know the answer to that one!

How long had it been since I’d really prayed; since I had “Let go and let God”?

That night I prayed like the sinner I am; I thanked God for the many blessings He has bestowed on me; asked forgiveness for my sins and to help me forgive others; pleaded with Him to not let mom lose her leg; and I tried not to question His plan.  OK, I said I “tried”.  I really needed answers.

I mean, I know He has a plan and that somehow everything we were going through was part of it, but I still struggled with it; I still cried myself to sleep as I wondered how my mothers’ pain and suffering could be part of any plan.

For the next several nights, I had vivid dreams about how I would take care of mom if she only had one leg; let’s face it, they were nightmares.  “Oh, Dear Lord, please don’t let this be an omen” I prayed silently each morning when I woke.

In my heart of hearts, I know God answers all prayers; I also know I don’t always like the answer.

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