Originally posted on May 22, 2017
Just a heads up. There is not enough paint to make this a pretty picture. I completely understand if you’d prefer to pass.
MLMB…
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If you read what I posted the other night about being needlessly thrown into full blown narcotic withdrawal, you (as did 
I) only got a tiny glimpse into the hell my sister experienced that ultimately took her life. She was also on the fentanyl patch and it was she who told me about them all those years ago. We both thought they were a miracle cure and we were so grateful to feel “normal” and able to function once we found them.
Until recently, the fentanyl patches were only made in multiples of 25’s and the dosages are in micrograms (mcgs or “mics”). The highest strength patch that is made is 100 mics and for many years I was even on that high of a dose. But my sister? My sister was on fentanyl a few more years than me and at the end she was at 125 mics. Which meant that she was wearing two patches at one time (100 plus a 25) every…single…day. For years. And thus her body was physically dependent on an incredibly high dosage of this incredibly powerful narcotic when she arrived at the emergency room that Memorial Day Weekend in 2015.
She’d known something just wasn’t quite right and it seemed to have something to do with her stomach. We’d talked about it and she wasn’t sure what was going on but she just chalked it up to another episode of the ulcers she’d had in the past. She had scheduled an appointment with her doctor to figure out what the issue was. But before that day arrived she came to realize that something was very, VERY different and whatever it was, it was very, VERY wrong. So, as much as she hated emergency rooms – especially the one she would need to go to – she actually asked her husband to take her to the ER to see if they could help figure out what was going on.
As they checked her out, they determined that one part of the issue was that her kidneys weren’t functioning properly. The doctors explained to her and her husband that the fentanyl could be a part of the kidney concern so they thought the best course of action would be to wean her down on the dosage of the fentanyl. Seemed reasonable, and she was prepared for what might come and believed that, being in a hospital, if she had a problem she was surrounded with medical help.
So she sent her husband home that night because she was worried about Rusty and Oscar, their dog and cat. She was about them just as I am with Andy. I have a voice and can get what I need for myself. He is completely dependent upon me which makes him in every way like my child. I’ll put him before me any day of the week. She thought she was in good hands at the hospital and needed to know that her babies were too. He knew she’d never rest without knowing they were okay, so he reluctantly kissed his wife goodnight and went home to their “kids.”
The next morning, believing that the fentanyl would be slowly tapered as was discussed the night before, she ate breakfast as the doctors updated her husband. But they let him know they were going to change their course of treatment. In their infinite ignorance, they had decided that the fentanyl needed to be stopped… absolutely, altogether, and right away. As in, the patches on her body at that moment were due to be replaced that very morning. So their not-so-bright idea was to just let it run out. No weaning down as they’d said the night before. It had to go.
Completely.
Cold turkey.
Of this I have absolutely no doubt: for whatever reason, be it that she just wasn’t paying attention or she was just too sick to be able to pick up on it… she could not possibly have realized what they were about to do.
Knowing what she and I both know/knew about what happens to a person in just a few hours when you forget to change a patch on time, had she heard that instead of titration they’d decided on cold turkey she would have been terrified at the prospect and would have let them know in no uncertain terms that stopping suddenly and completely was simply NOT an option. I have no doubt that had she realized what was about to happen, she would have balked at a minimum… and might very easily have told them she would leave that hospital before she would allow them to put her in such a dangerous situation.
But she had no idea of the nightmare to come.
And so, in the early hours of that evening, when her body first began to register the absence of that incredibly high dosage of that incredibly strong narcotic that she had been on for so many years, she once again put her babies’ welfare ahead of her own. She once again shooed their reluctant Daddy back home. Against his better judgement, he once again kissed his wife goodnight. Whatever words she uttered in those parting moments about him staying or going, telling him goodnight, telling him she Loved him, and trying to convince them both that she would be alright… they were the last words her husband, her soulmate, and her sister would ever hear her speak.
He’d been home only a few hours when he received the first phone call around midnight that “she wasn’t doing well.” As he prepared to head to back over, he received a second phone call from one of her doctors. He was calling to ask if he’d like him to meet him at the hospital. This doctor – knowing what he already knew about her dire condition – actually found the need to ASK if it might be a good idea to meet her husband when he arrived?!! But more about him later.
When her husband walked back into the hospital for what would be the final time, that doctor – who met him at the door wearing shorts and flip flops – spoke these six short words:
“We just don’t know what happened”
By the time he had gotten back to the hospital, back to the bedside of my beautiful sister and the Love of his life, she had already coded.
Three times.
Stripped away from them both was the opportunity to say all of the things that two Lovers… these two previously broken people who had truly saved one another’s futures if not their lives… these two people who had a kind of Love that most people only dream of….
These two Lovers would never have the chance to say the things they would both want and need to say when the other half of them was dying. In every way they were the fairytale. The kind of couple who should have grown old together and many years later be found sitting in their rocking chairs on the front porch, still holding one another’s hand, and stealing quiet kisses when the great grandchildren weren’t looking.
But the final chapter of their fairytale life would be something bordering on some twisted sort of horror show.
Through all of this, with she and he not really knowing that what was going on was so deadly serious, they hadn’t yet been concerned enough to call and let me know that she was even in the hospital. But, of course, neither one of them could have ever known that things would spiral out of control so quickly. He called me around five a.m. to tell me that my only sister was dying. I was in a foggy haze when I answered and he was having trouble finding any words that made sense to him, much less to me. I think it took me way too long to realize that this was not a nightmare… that this was just one more incomprehensible phone call about one more incomprehensible loss of the only other female left from the family of five into which I was born.
That really was his broken voice In my ear. And he really was telling me, as best he could, that my sister was laying in a hospital bed and she was surviving only on the machines that were keeping her body functioning. He really was letting me know that, pretty much, my sister was already gone. He was telling me that the doctors – who’s incompetence had killed her – were asking him if she had given him any advance directives about end of life decisions. And he was trying to tell me that even though he knew what her wishes were, he still needed to know that he wasn’t alone in that moment… that I understood the gravity of what was being asked of him.
I did know her wishes. And even though I doubt I’d yet grasped what was actually happening… what had been done to her… I did understand the gravity of what he was being asked to do. I had known for many years that she and I were of the same mind. That my beautiful, Loving, vibrant sister would never want to be left to suffer on tubes and monitors and machines that she could no longer turn off of her own volition. And so, with a strength of will that I still can’t begin to fathom, this heartbroken man signed his name to a piece of paper that, although he knew would mean the final breath would soon arrive for the Love of his life, it would also mean that he would selflessly give her the final, blissful peace that she so deserved, especially given the additional needless suffering she had endured.
My fifty seven year old sister was suddenly dead.
And I wouldn’t even make it to her funeral.
You see, the old bastard that was our father wasn’t dead yet. And he lived a mere eight miles away from their home. And he was suddenly lurking…. Lurking around trying to find some kind of pathetic sympathy as some sad, poor old misunderstood fella who’d lost his only beloved daughter. He did give it his best shot, but his acting abilities had apparently long since faded. And he ultimately ended up not even showing his face at her funeral. I highly doubt it was out of shame though since, based on my experience, I don’t believe he had the capacity for empathy… much less shame.
It’s not as if I wasn’t physically able to get myself to Virginia. I could have driven or I could have flown. I wanted to go. I wanted to be there to at least honor her life and take part in letting her go. It had been double digits as far as the years since I’d seen or spoken to the man. And it speaks volumes that he and my sister, who had moved to Virginia in part to be near him (for she always had been Daddy’s girl… or wanted desperately to be) hadn’t spoken for the past seven of her final years. And so, once again, I allowed that sick, psychic bond with him to prevent me from being present at my only sister’s funeral.
But that was only the first layer of my guilt.
During that awful phone call it had crossed my foggy brain to suggest the idea of an autopsy… but he sounded so broken already that it just felt like the mere mention of it was more than he could bear. Or maybe more than I could bear to speak out loud…. So I remained silent only to discover months later that the same thought had passed through his mind as well.
On top of our mutual silence on the matter, it was no surprise to discover that the hospital and the doctors who “just (didn’t) know what happened” were none too eager to do an autopsy. Given their utter lack of curiosity, and most assuredly their concern for their own exposure in their contributions to my sister’s sudden death, they quickly checked the “NO” box for an autopsy and came up with no less than four labels for her death certificate to try to solidify their utter lack of responsibility – much less remorse – in hastening her death.
Looking back, I can accept there there is every possibility that my sister was so ill from the pancreatitis, the illness that she did not realize was the cause of her pain, that she may well have not survived that hospital stay. But due to their ignorance and the utter insanity of their decisions regarding her care, those doctors made her last hours on earth a living hell. And knowing what I know now after experiencing just a tiny piece of the agony and torment of the full blown narcotic withdrawal their actions put her through, I believe that it was the shock… possibly toxic shock… that literally blew her frail body to bits and ravaged her mind and spirit to the point that when death finally found her it was sweet relief.
I, along with many others including her husband, believe that had she been given proper care, the pancreatitis that is listed last on her death certificate might have been first. That had she been properly diagnosed and even been found to be at death’s door, she could have at least been granted some precious time to share those last hours… and possibly days… with her soulmate in some relative measure of comfort. That with rational, reasoned medical care she and he could have had the kinds of conversations that Lovers have when the other half of them is dying.
We tried to find her justice. He got an attorney who looked into the case. We even had a meeting, him in person and me on the phone, with the CEO, Medical Director, and a couple of other top dogs at the hospital, one of which I’m certain was a representative of Risk Management. The CEO was an asshole, which is putting it mildly, but the Medical Director actually seemed to show us some compassion. He actually seemed concerned about the treatment my sister received… or the lack of it. He even seemed open to my suggestion of creating a program of training and ongoing retraining of the medical staff on the protocols for patients who are on the fentanyl patch. I had even asked that it be called “Leah’s Legacy.”
But nothing was resolved in that meeting. So after hearing nothing for a month or so and without her husband knowing, I called and spoke again to the Medical Director. You see, even though the mortgage was well under $100K, her husband was in very real danger of losing their home… the castle that had held their fairytale. The Medical Director quickly lost even a hint of that previous veneer of compassion at the mere suggestion that they might help this man hold on to some semblance of the life he’d had before their incompetence had taken his wife.
He referred me to Risk Management, which I did call. Suffice it to say that the woman I spoke to was a great fit for the position. Based on her tone and her response, I could swear there was spit flying out of her heartless mouth as she basically told me that hell would freeze over before they would spend a dime of their for-profit loot on some schmuck who got suckered by a predatory lender.
Two last items of note:
(1) During that first meeting with hospital staff they made it a point to emphatically state that they had spoken at length with her doctor (you know, the guy who had met her husband in shorts and flip flops at the hospital after midnight?) and he had unequivocally stated on the record that “he had been there all night,” and,
(2) The most galling of all, her husband overheard the nurses giving her fentanyl in her IV after she had already repeatedly coded and was, in essence, beyond help.
And so, like our Mother before her, I would find no justice for my sister. And, like our Mother before her, another holiday weekend would be forever altered by her death. Here’s a portion of what I wrote about my Mom on Mothers Day… a story few of you know and I doubt I will ever post:
”You know, there is an urgent truth to the words that are so often spoken in the context of social injustice:
No justice.
No peace.
How does one find peace knowing that you were never successful in finding justice for the woman who brought you life?”
I wasn’t successful for my sister either so I’m 0 for 2. So come this Friday…
The Friday of this coming Memorial Day Weekend…
The time for a second chance at justice to even be an option will finally run out.
MLMB…