Our Jeff was facing LIFE in prison, due to being a "repeat offender", which is the ultra simplified version. In actuality, it's well documented, even on the news clips from the arrest, that this was a man suffering from mental illness delusions. Every arrest has been due to this, yet he still gets punished for his disability.
Jeff has never been a criminal. Jeff is a victim of being damaged by medications his body cannot metabolize, and that actually made him more psychotic, instead of less. He is 49 years old, and this has been going on for 30 years.
DAMAGED by the system, and by "treatment". Oh, they've treated him, alright. There are volumes of stories about how he has been "treated". Mistreated. Raped. Held in seclusion. Beat up. Restrained, phsically and chemically. Trauma from a young age, nonstop. HE IS A SURVIVOR.
Looking back on a breakthrough year, here's the rundown.
January 2018
Armed with momentum from nonstop networking... call after call, conversation after conversation, searching for a lawyer for years, to DECRIMINALIZE our mentally ill loved one, who was suffering severely in DLMCJC Tulsa County jail (yet again).
The family put our money where our mouths (and hearts!) were. The stars lined up when we landed the perfect legal team. Brave, ultra intelligent, rare. In a state that has zero mental disability attorneys, these are legal SUPER HEROES.
FEBRUARY 2018 brought:
Knowledge-sharing.
Expert-finding.
Evidence-gathering.
Meetings that slammed doors in our faces -
yet became open windows of FREEDOM!
A very challenging month.
But this is when the axis began shifting, from: |
| REVOLVING DOOR |
crisis center>to>homelessness>to>jail>to>homelessness>to> crisis center>to>jail>to>homelessness>to>crisis center>to>homelessness>to>jail>to>homelessness>to> crisis center>to>jail>to>homelessness>to>crisis center>to>homelessness>to>jail>to>homelessness>to> crisis center>to>jail>to>homelessness>to>crisis center>to>homelessness>to>jail>to>homelessness>to> crisis center>to>jail>to>homelessness>to>crisis center>to>homelessness>to>jail>to>homelessness>to> crisis center>to>jail>to>homelessness
...AND ON AND ON AND ON...
...AND ON AND ON AND ON...
MARCH 2018
...blew in a high stakes, dramatic entr'acte of law-and-order that turned the tide of torture and death, toward safety and care, via some never before litigated mental health laws.
Amazing what following the law, can do.
 |
| The winds of change. |
(That's all I'll say on that. Must save the meat of this shocking true story for the movie!)
APRIL 2018
The curtain was drawn back.
No more crying "ignorance."
For, Behold!
"Consumer Bill of Rights"
Listed on the Oklahoma Department of Mental Health and Substance Abuse Services' website:
For those that don't know, the word "consumer" refers to patient.
From the POV of the patient, that word is insensitive, hurtful, and has to be changed.
Document is found specifically at this link:
We found out WHY
our loved one
got worse in the name of mental health "treatment,"
by asserting this right:
"Each consumer has the right to request the opinion
of an outside medical or psychiatric consultant
at his or her own expense
or a right to an internal consultation upon request
at no expense."
!!!EUREKA!!!
!!!EUREKA!!!
I'll bottom line it:
We brought in an outside psychiatrist. This doctor was able to administer a DNA swab, to show which medications the patient can metabolize, because each individual human being has unique DNA. Should be the FIRST thing they do, prior to forced "meds". Seems like a no-brainer, right? What better way to zero in on the most effective, least damaging, least expensive, approach? But caregivers RESIST (HARD). YOU HAVE NO IDEA. Mind boggling! This simple mouth swab - developed by the Mayo Clinic - is a foolproof tool to GUIDE the caregivers to appropriate treatment, and lessen the guessing game of "this drug or that." You see, not everyone's DNA can tolerate certain chemical concoctions. Some people are allergic. So, we exercised the patient's rights, and got it done. What we learned is...
Sometimes
the pill and/or injection
IS THE PROBLEM
Plus, the arrogance of caregivers that don't believe the patient when the patient or the patient's family/advocate says the drugs are harming the patient is a massive, over-reaching, expensive issue that needs a seriously humble solution. Laws about this are broken every day, at every facility. This leads to the criminalization of the patient. There needs to be an oversight committee to make sure the patient's rights are being upheld and not usurped by misinformed employees and omitted by those that should know better! Hospitals need to be training employees on the rights of patients and the treatment advocate...blatantly ignored. This all adds to the patient's suffering.
MAY 2018
The day we got the www.Genesight.com DNA mouth swab results, proving that three decades of forced meds have indeed harmed our loved one, felt MIRACULOUS. FINALLY! Relief found, in genetic facts. Complete horror at the 49 legal pages - the database/list mom has kept of every psych drug Jeff has been forced to endure, and every "hospital" that exisits in Oklahoma that he has been a patient at over the years. It's daunting, and truly a miracle Jeff is still alive after decades of harmful drugging, homelessness, jail, hunger, and abuse.
Jeff's story is an important story.
His story will be told.
This is just the beginning.
This is just the beginning.
The damage is beyond immense and extends exponentially to mom, and the rest of the family.
We were told by one of our attorneys that families always give up on their loved one in the mental health system, because it's too hard.
You got that right.
WAY TOO HARD.
JUNE 2018
The legal process found everyone looking for an appropriate place for Jeff to live, upon discharge from the crisis center. (I've blogged about this.) There is a gaping hole in a system that allows vulnerable psychiatric patients to be put on the street, without any way to know if the drugs are helping or hurting them, and for them to maintain meds if they ARE helping them. The burden is huge. This hole needs to be acknowledged and closed, with appropriate housing/hospital options, so the "frequent flyer" psych patients can start to be productive citizens again, instead of the perpetual cycle/trap many of them are in. Jeff has been sent from hospital to homelessness many times. But our legal team prevented it in 2018. We are eternally grateful for that.
JULY 2018
Mental Health Association of Oklahoma told us they cannot serve Jeff this time, because his needs are beyond their scope. It amazes me that the MOST chronic, get the LEAST care and assistance. Plus, the HUD regulation prevented Jeff from retaining his eligibility for subsidized housing options. Another gaping hole in the system that I've written about. We will be on that, soon.
Our attorney found the one and only place for Jeff to live, that serves his skill level.
On July 19, 2018 Jeff got his life back. What a moment that was.
Long time coming is the understatement of the century.
Complex details that I've written about as it was happening, so I won't repeat, here.
For the first time in Jeff's life, we had hope.
A place to live where people actually care about him.
A huge VICTORY in the grand scheme of his life.
But It shouldn't have cost one family so much to prevent this tender human from being punished because he has a disability. It was worth it, and we have no regret, but it was expensive. And....our WJWMHLF nonprofit will be up and running soon in 2019, which will help change the system for everyone, not just for our loved one. I'll be blogging about that... SO much, it's overwhelming.
AUGUST 2018
Jeff's story begins shifting here, and I am not going to divulge details, even though he has given permission. What was stunning, was the timing of our father's health declining, overlapping from Jeff's discharge and new living situation. This subsequently took over MY life, as our father is 82 yrs old, depends on a walker, lives alone, and he has no one to help him. I had already spent most of 2018 in Oklahoma back and forth from where I live in Georgia, and suddenly I realize dad needs me.
Why does dad's story matter here? Because Jeff and dad are 50% related by DNA, and dad had one of his rare bouts of "episodic mania" starting summer 2018. I couldn't believe the timing. It also matters, because it highlights how important it is to know that hydration and nutrition affect mental status, while doctors only focus on psych meds, as usual. So I had to stand firm, and be strong, to prevent dad being damaged by the psych drug guessing game.
I am my father's Designated Treatment Advocate under Oklahoma Statute under 43A O.S. § 1-109.1.
http://www.oscn.net/applications/oscn/DeliverDocument.asp?CiteID=436655.
As outlined in Jeff's story, Dad's and my rights as his TA were ignored.
This is how it ALWAYS goes.
SEPTEMBER - DECEMBER 2018
Without giving specifics, Dad spent over two months in one hospital.
It's way more involved than that, but I'm refraining from too much detail. #LongHaul
*Did you know that UTIs (Urinary Tract Infections) can cause delirium?
http://www.benrose.org/resources/article-delirium-uti.cfm
*Did you know that Sepsis can cause an abrupt change in mental status?
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3673822/
*Did you know that dehydration can cause sugar/glucose levels to spike?
https://www.everydayhealth.com/type-2-diabetes/symptoms/surprising-causes-of-blood-sugar-swings/
*Did you know that hospitals count carbs for diabetic patients, but don't care if the diabetic patient binges on diet pop, potato chips and sugar-free deserts - as long as the carb count is adhered to?
*Did you know that when a patient has a surgery at one hospital, but ends up in another hospital, there is a fear-based lack of continuity of care, that creates more problems, end up costing more money and could become permanent issues?
*Did you know that when an elderly patient is in ICU, then moved to the main hospital, the staff sometimes doesn't get the patient up, and they could lose their ability to walk?
*Did you know that stress releases cortisol in the body, and cortisol causes glucose levels to rise?
https://insulinnation.com/treatment/how-stress-hormones-raise-blood-sugar/
*Did you know sugar causes inflammation in the brain, which can cause depression and mania?
https://kellybroganmd.com/from-gut-to-brain-the-inflammation-connection/
and
https://www.psychologytoday.com/us/blog/the-depression-cure/200907/dietary-sugar-and-mental-illness-surprising-link
and
https://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(16)30262-0/fulltext
*Did you know there are promising studies on probiotics to treat mania? https://www.health.harvard.edu/blog/probiotics-for-bipolar-disorder-mania-2018062514125
* Did you know administering first-generation psych drugs to the elderly can cause death twice as often? https://www.webmd.com/alzheimers/news/20120223/dementia-some-antipsychotic-drugs-riskier-than-others#1
*Did you know that a small percentage of patients given injections of certain psych drugs, lose bladder function? https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4730936/
and https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3488871/
*Did you know that even if a judge tells a doctor to try to get the genesight swab done, and even if the hospital has the swab kit in another part of their building, it still may not get done?
*Did you know, sometimes doctors may say one thing to the patient at bedside and say something completely different/quite the opposite in private to the family/advocate that witnessed the patient/doctor conversation? And when you address it with the hospital, fear may become a power play, which could lead, once again, to the treatment advocate rights being violated, undermining the health of the patient.
*Did you know, hospitalists, 95% of the time, don't return family/treatment advocate requests for a call back? And they get mad when social workers tell them to.
*Did you know, that if a hospital chart says a patient has a psych issue, that all SNF's (Skilled Nursing Facilities) will say no, they can't take that patient? Makes me worry about these days, 1 in 6 Americans, popping psych meds. When YOU'RE elderly, you will not have a SNF. Think about that.
https://www.scientificamerican.com/article/1-in-6-americans-takes-a-psychiatric-drug/
*Did you know the doctor always knows best - even when they don't?!
#CultureOfArrogance #StandardOfCare #MedicalModel
BEWARE of issues you might never consider,
because no one cares for your loved one like you.
STAY ON THEM, lest severe complications and even death are real posibilities.
The things we learned this year have BLOWN OUR MINDS.
ALL VERY BACKWARD.
ALL VERY WRONG.
This story is astouding. I realize I'm not painting a clear picture, using generalizations. But I am chomping at the bit to WRITE THIS STORY and SHOUT IT FROM THE MOUNTAINTOPS. Now that the storm has passed and we were able to save dad's LIFE, maybe I can have time to carve out the screenplay. All the records have been tucked away for safe keeping, and shared with appropriate folks. And nothing important ever changes, unless we go through the fire to make it happen. So, that's what we did.
This fall was unreal. My dad almost died.
If I hadn't have fought for him, he would've been stuffed in a nursing home, all his assets liquidated, and forgotten about.
NO WAY I was gonna allow that.
But we stuck it out. Dad and the family endured shocking things I will not divulge here, and now, Dad is doing great. Many serious, life-threatening health issues later, a couple of surgeries, thirty-five pounds gained, and he is about to have the best year of his life. At some point I will send an update to those doctors that were giving up on him, so they will know WHY I bucked their system. Dad has years left in him, and he brings joy to many with his music, wit and charm. He has left a very positive impression on those that didn't scorn him because of multiple health issues that caused a period of manic behavior.
NOTE: Psych MEDS, Dad DID NOT NEED. Oh, they still gave them to him in secret...and I confronted those caregivers. It's not right. And over time, a nurse told me she agreed that the psych med was doing nothing. I told them it wouldn't. And now, his new/current doctor in Assisted Living has taken him off, and is listening to the family, as he should. Thankful for that.
IT WAS ALWAYS MORE ABOUT
* (DE)HYDRATION
* STRESS
* NUTRITION/SUGARS ... Which is what I told them, but the doctors were taught in med school to deal in medications, not natural solutions. But TIME HAS PROVEN all we tried to tell them, to be true. Thank GOD my Dad made it through the storm.
*********************************************
In this family, the suffering of loved ones isn't left in secret silence. We are their voices. And this year brought some long overdue attention to wrongs that were made right, in hard fought battles to end the criminalization of my brother, and standing up to MANY "powers that be"in both his and Dad's cases. So many instances of the family being right, against the grain of medical professionals.
We'd rather not have to tackle these issues. But standards of care sometimes need to be rattled when harm has been done over and over, year after year, and the patient getting worse and worse. We are paying attention. We did not allow the "life in prison" Jeff was facing. It made me older. It made me wiser.
I'm sorry to be so vague. I'm just a sister, writing about life-long family issues, while not divulging too much. Must protect privacy of all involved. But the complexities are layered in the abyss.
For sure, in 2018 there is more gratitude than in years past. The world seems to be catching on, slowly. Mom isn't alone in her advocacy journey for Jeff, any more. And DNA doesn't lie.
Eternally grateful for the extremely intelligent folks
that have been on this maverick journey with us, this year.
* Milestones reached * Mountains moved * Loved-Ones Lives Literally Saved *
We are tired. But even though it was a gargantuan year,
it's only the tip of this iceberg.
And our ship, moving forward
even though it IS a titanic voyage... will not sink.
Love does not shrink, or tremble,
especially when real change has begun.
After we catch our breath, hit refresh, refuel, refill our wells... This destined journey will continue. There's no way all the suffering so many dear human beings have endured for decades will not, in the end, have great meaning. So, we document and discuss. We present facts and resources. We learn and share. Communication is key, and we must not fear ruffling some feathers, here and there.
A far cry from one year ago, when Jeff was sitting in jail, secluded and delusional,
facing years of punishment he did NOT deserve.
I was told by a highly respected attorney who is a lifelong friend, that he had never seen an outcome like we got for Jeff. He called it "Herculean". I won't disagree. That's what it felt like. Dad's too. And it was all worth it.
It's 2019. Onward!
Here's to positive change like never before.
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| Time to STOP THE MADNESS ************************ Jackie Welton DiPillo |
