Thread by @LelenaPeacock

I have a grievance regarding my mom's care during her bout w/#sepsis. #dementia

At the end of October 2019, my husband & I awoke to find mom's breathing labored, & her mumbling to let her sleep. We let her rest. A fever spiked within the hour, & suddenly she became deathly ill.

She was twitching, sweating profusely, in full rigors, & unable to sit up/speak well. She looked TERRIFIED. I thought she had a stroke. Turns out, it was a high fever from an infected gallbladder. She landed in the #ICU. ALL her vitals were jumping around. It was horrible.

She landed in the ER & eventually the ICU. Turns out she had #sepsis from the infected gall bladder. The ICU's 1st step? Changing her meds around INSTANTLY. Specifically they rescinded ALL #opioids abruptly. After over a decade on them, she was thrown into acute withdrawal in ICU

I know what doctors will say: BUT LELE, we have to #stabilize patients who are having problems breathing, etc. YES, DO THAT. But was it necessary to take EVERY mg of her pain medication away abruptly? Cut her celexa IN HALF? I begged for 1/5 of her dosage to prevent acute w/d.🤔

I politely addressed the doctor & asked if that would be a reasonable solution to the problem I knew she would have to largely endure most of the pain, but these abrupt & drastic cuts in meds were devastating. Her BP skyrocketed. The doctor agreed my request was reasonable.

I thought it was a decent plan! I'd go home feeling worlds better about leaving her in the ICU, only to return the next day to find her agitated & begging for help. Sure enough, all pain meds were rescinded. To my shock, her #neurontin was now slashed in 1/2 too. Again, I begged.

I asked why they cut her dose of celexa & neurontin as well. I was told doctors were afraid, & mom was on an ^unacceptable^ dose of certain drugs for her age-according to the guidelines from CMS. The doctor admitted being scared to prescribe #opioids.
Finally, the truth came out.

He said: The hospital doesn't like it, Medicare doesn't like it, & we get threatening letters about #opioids & ANY drug we Rx that goes outside the #StandardOfCare. The doc's shoulders slumped in sheepish defeat.

I'd put him at about 35 years old-yet he appeared sad & haggard.

In the last week & a half, I have tried to #advocate for several things. Restoration of a #PainRegimen that works (I DO NOT CARE WHAT IT IS), a preventative for her recurring UTIs, & the removal of a foley catheter that was likely added for convenience. She has a UTI. Again.

She has taken 4 falls this week, & pulled out the tube draining her gallbladder of stones, sludge & infection in a fit of agitation, pain, & frustration. She falls in the middle of the night. I suspect she's trying to get up to ^find aspirin^. UTIs are agonizing for her.😢

By some #miracle, she has broken no bones & sustained no concussions. NO, THIS IS NOT THE HOME'S FAULT. Falls are part of her reality when #infection strikes. The pic below is just before the UTI. She's leaning forward to relieve #lumbar pressure. She isn't mad. It's the pain.

Her apetite is gone. Yesterday I found out #hospice took her on. YES! I was so relieved!

But #hopsice hasn't shown up yet.

I just want to get her back to THIS.⬇️
She can tolerate a LOT of physical pain. She is hurting in all of these photos, but she has #analgesia.😲🤗🤗😁

The #truth is finally coming out amongst harried #HealthcareProfessionals. I've had almost every nurse or doctor flat out admit that they MUST adhere to #guidelines & avoid controlled substances. They could lose their license or WORSE. I don't blame them for the #BrokenSystem.😖

It's worth emphasizing that doctors, especially in hospitals or large practices/clinics, are unable to provide #PatientCentricCare. It's long gone now. Our current system rewards doctors 4 following rigid rules & regulations (GUIDELINES). There are pitfalls for docs everywhere.😔

My mom doesn't fit within the treatment parameters #CMS demands. This means she was treated cruelly in the ICU while she had #sepsis by docs I believe are #compassionate. I'm worried. In this system, I don't expect my mother 2 survive long. If a med has risk, it's denied/changed.

I need to let go of her day to day care & become a daughter again.😔

But I can't.

Not yet.

Mom doesn't even have tylenol during the fever & #IntractablePain.

I'm losing her to a #BrokenSystem. I'm exhausted, & it's hard to hold back the tears.💔

And I can't fix it. #Help