Elder Eyes Wide Shut

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World Elder Abuse Awareness Day was on June 15th.  Father’s Day was June 16th.  Many are not aware of WEAAD.  I only know it exists because of a book I started co-writing with a friend.  A legal guardian and conservator have hijacked her father’s life and estate and she cannot get him out.  To date over half a million dollars have been billed to estate; he is drugged to incapacitation so that he cannot defend himself in court.  My friend, his daughter, is terrified and panicked.  Fighting with every cell of her energy that has not been killed in the process against the system.

It is consuming my thoughts and destroying my perspective on reality.  I had a sit-down with my parents to pass along what I learned about elder abuse through this project.  I had to warn them.

An older man holds his hands together obscuring his face, head dropped in sadness

My friend, who I will call Lilly to protect her and her family, is amidst a legal battle with her sibling and a cabal of lawyers over the legal guardianship and conservatorship of her 74-year-old father, though he can still make decisions.  His decisions are neither recognized nor respected by the family courts.  As Americans, we complain about our presidents being in their 70s or 80s, but our parents are pretty damn young, smart, physical, and capable at 70.

Lilly explains her father’s life had been kidnapped.  Sacrificed, slowly, for the cash cow underbelly of the legal system.  His bank accounts have been drained.  Property for sale.  Her bank account is near zero as she spends the only dollars left fighting for her dad against his conservator and legal guardian.  This week she received a petition against her home.  She co-owns a condo with her dad, and they want it.  By technicality, they have that legal right.

My jaw is dropped and I have a perpetual pit in my stomach.  I fear for her but I also tread with caution.  Is this real?  Lilly keeps saying it feels like a movie, when I remember… I’ve seen this movie.

I Care a Lot, starring Rosamund Pike, dropped on Netflix in 2020.  It is a horror movie veiled by black comedy.  How many more horrors could we take in 2020?

The IMDB logline is “A crooked legal guardian who drains the savings of her elderly wards meets her match when a woman she tries to swindle turns out to be more than she first appears.”  It does not say “Based on a True Story.”

Was my old friend, Lilly, feeding me a story?  We don’t live in the same state and haven’t seen each other in a while.  Was she plugging a controversy into ChatGPT and reading it back to me?

As a writer and content producer, I attempted to write a memoir treatment to help her expose this life-altering story.  We talk for hours and hours each week.   The transference of fear I have includes the sit down with my parents and the countless speculation, anger, and sadness my husband must endure.

In 2021, Esquire quoted J Blakeson, writer and director behind I Care a Lot. “The idea first came when I heard news stories about these predatory legal guardians who were exploiting this legal loophole and exploiting the vulnerability in the system to take advantage of older people, basically stripping them of their life and assets to fill their own pockets.”

This is real, and yet, I had a hard time suspending my disbelief.  I ignorantly believed the world was just.  Scratch the silver screen.  This is happening, and hiding, in plain sight.

Lilly told me about her struggle to find a lawyer to help her.  Criminal law would not touch her case.  Everyone pointed to elder law.  She followed their advice and held confidential consultations with three elder law attorneys, but no one took her case.  Instead, one took that information and colluded with her sibling to take action on her father’s estate.  The first lawyer nominated the second one to be her father’s temporary legal guardian and conservator until the third was nominated to be his permanent conservator.  By the book, any court-appointed justice would deem this is as unethical.  100 percent a violation of the lawyer-client code.  But this crime is layered and seems to be protected by the courts.  But we must swear and solemnly affirm that what we shall state shall be the truth, the whole truth, and nothing but the—

They took the very truths and words against her.  Framed Lilly as the abuser and the reason her father should be under a legal guardian.  While having their cake and eating it too, they rarely know the life inside of a jail cell, or a life removed of agency.  God bless we live to an old age, but god be damned if we get taken by this scandal.  That our lives can be stolen, frozen, and drugged.  For profit.

I went into research mode.  I found several documentaries and news stories attempting to blow the whistle. Mickey Rooney produced a documentary on elder guardianship and exploitation in 2012 called Last Will and Embezzlement.  Headlines pick up the Wendy Williams conservatorship daily.  The #FreeBritney Campaign was a viral sensation.  Mad in America has an informative interview, “’A Playground for Predators’: Diane Dimond on The Abuses of Guardianship.”  Dimond includes too many true stories on the topic, and lists many resources and knowledge to help blow the whistle.

In 2018, true crime director Billie Mintz released The Guardians, an expose on a legal kidnapping business in Nevada.  I had a visceral reaction.  The lawyers, the courts, the nursing staff, and the victims spit lyrics verbatim of what Lilly had told me.  I cold-called the Mintz.

I’ve worked in non-scripted and editorial television since the early aughts.  I pitched my credits in hopes of verifying my ethical intent for a call.  He offered a time for the three of us to speak.

The film exposes a trillion-dollar business.  An unjust common practice that is duplicitously supported and enforced by so-called legal practices.  “Do not go to the courts,” he said on our call.  “They are in on it.”  In the deep waters of directing The Guardians, Mintz learned elder law, and the injustice and inhumane practice of legal guardianship is a calculated effort by the court, the attorneys, and the healthcare system.  He said he entered this world as I did, with reluctance and skepticism.  He could not accept this corruption as fact.  There had to be a catch.  A victim exposed why we cannot imagine these injustices to reach far and wide.  “I had to learn.  There is no universal moral code.”  I’ve been playing those words on repeat daily.  There is no universal moral code.

Lilly told Mintz her backstory.  Her father was very successful and owned many commercial and residential properties.  Her mother passed not long before and he was grieving the loss of a marriage lasting half a decade.  She and her sibling were estranged.  She was appointed, by her father, as power of attorney and health proxy if in the event it was needed.  Her sibling served her papers to remove her titles and take control of her father’s assets.

Between her sibling and a ring of lawyers, blessed by the judge again and again, her father’s financials were compromised and now out of his control. The lawyers found doctors who would willingly sign false statements that he was unable to take care of himself, and they made untrue and harmful claims that Lilly was unable to care for him.  One attorney drugged him to incapacitation so that he was medically unfit to attend the trial.  A judgment can be made without a man in court.

“This is a business.  You are a target.”  Mintz went on.  And I swallowed the harrowing truth.  There is no universal moral code.  He broke down the viciousness of this organized crime and what he learned first-hand while in production.  What is happening to Lilly is textbook.  Play-by-play.  WWE-style blow-by-blow.  The lawyers love it when you push back.  It is a drug.  If it were Vegas, the lawyers would be the house.  You can come to play, but the house always wins.  Lilly remembers a lawyer threatening her: “If you push back, we will ruin you and drain your assets.”

One of the victims in the documentary The Guardians, Julie Belshe, who lost her both of her parents, Rudy and Rennie North to conservatorship, fought tooth and nail to get the District Attorney and the Attorney General to listen, investigate and send their kidnapper April Parks to prison.  She now continues the battle by leading the National Guardianship Liberty Movement.  Belshe confirmed the cycle is a minefield of layering and lawyering.  It is built for you to set off bombs one by one, and the lawyers or the judge step in to provide a solution, one that will then destroy every ounce of faith, every dollar of cash, and every square foot of real estate.

One in ten citizens over the age of 60 suffer elder abuse.  We aren’t expected to retire until 67.  I am not advocating for presidents being at this age, but if they can rule the country, why are our loved ones at such a life-threatening risk?  We work and work and work in the land of the free and the home of the brave to wait for our social security check and now must fear someone taking it from us?  Your golden years ring different when someone else is on the receiving end of your hard-earned cash.

Belshe drew me a diagram and laundry listed the players.  “Everyone is in on it.”  Lawyers, courts, social workers, hospice, doctors, nurses, nursing homes, realtors, rehab centers, and attorney generals.  It goes on.  They wrongfully trick you into legal guardianship, identify vulnerabilities whether a rift in the family or an elder that lives alone, and then attack.  They manage a successful transfer of power to their firm, legally, then reframe your will, your property, your accounts, and your family’s character to their narrative.  They defame and defund you.

“And Lilly’s sibling is a f*cking idiot.”  Belshe said.  “He won’t get a dime.  They are playing him too.”  They spend down.  They bring in a suite of aids, doctors, and physicians that the victim does not need, bill back the hours, generate interest on your money, and liquidate your funds until the elder is on Medicaid.  They accelerate their death and cremate them.

There is no universal moral code.  Just because I am good, and I have empathy, does not mean others do.  It is the removal of our independence—one that this country prides itself on daily.  That which makes us human, more importantly.  Yet, Lady Liberty looks down on us and laughs.

I follow a lawyer/influencer on Instagram/TikTok.  The firm claims to “be different.”  And I’m in too deep not to test the waters.  I emailed them asking for guidance on a case like this.  In under two hours, I received a form letter response.  A form letter I’ve heard Lilly read to me time and time again regarding her quest for help.  After careful consideration….  We regret to…. Seek assistance from a firm that specializes in this type of practice.

The specialists are the enemy.  And I am struggling to find the heroes in this scripted alternate reality.

There are professional criminals in our system who are provided a funded playing field, and sworn into law.  I wish we could tell the whole truth, but this legal mafia is a well-oiled machine, which appears to be veiled and protected by the state itself.

Lilly and I had a call with an acclaimed journalist.  Her take was that American citizens will rally for our elders because we are all destined for their future.  We are in the early stretches of the Silver Tsunami, which is the highest percentage of elders our country has known.  This is the time to knock on the media’s doorstep.  Someone in politics would rally around this during an election year.  (Yet another one in the system capitalizing on this crime.)

Yet we’ve yet to find an investigator to help a family whose monies have been depleted.

We know there is an audience out there.  We are all subject to abuse.  I ask you, rally with us.  Share your common stories and make noise.  Suspend your disbelief and learn secondhand how our country is endorsing terroristic acts against our twilight years.

The United States Senate Special Committee on Aging estimates 1.3 million adult guardianships in the United States and an estimated $50 billion in assets under guardianship arrangements.  Try to remember you are not alone.

You do not need someone to tell you no way, oh my god, I can’t believe it, who would do such a thing?  Find a social support system of others who understand and know this is real.  You need a network that says I know.  This is what we are going to do.

***

Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.

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Jaimee K Martello
Jaimee K Martello
Jaimee K Martello is a live TV, documentary, and sports producer with 20-plus years of experience. A passionate storyteller in many mediums, she explores her journey through writing creative nonfiction and personal essays. She has been published in Newsday, the Village Sun and HuffPost Personal, among others. Jaimee is now an advocate for Elder Rights and is writing a novel based on too many of these true and tragic stories. If you would like to support Jaimee and the victims on this quest or share your story, please contact [email protected].

24 COMMENTS

  1. America must wake up. Our Probate and Family Courts across the Country are ignoring our Constitutional & Civil Rights by throwing our ignoring their wills, trusts, and last wishes! They’re being financially exploited by the legal cabal and isolated from their families! Beware there is nothing Legal about this!!

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    • I think you mean, there’s nothing “lawful” about this. The systemic crimes of the maritime lawyers (America is supposed to have common law – the law of the land) are downright convoluted.

      This guy does a good job of breaking the complexity of it down in his “foundational knowledge” section. Although, I’ll forewarn you, you may need to listen to it several times, to wrap your head around how staggeringly convoluted the maritime legal system is.

      https://awarriorcalls.com

      Thank you for pointing out these horrendous legal crimes, Jaimee. I was handed over one of those contracts, combined with a take a percentage of gross thievery contract, all disingenuously disguised as an “art manager” contract, by a creepy psychologist.

      Wow! It was a truly appalling contract! What a sick, control freak nut job that psychologist was! No way, Jose! Get away, and stay away, crazy, criminal computer hacking, and attempted thieving, psychologist!

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    • Julie, see my comment below. Thank you for your tireless efforts. We just won our case, got it dismissed for lack of jurisdiction on Friday. There is a way to use their lawlessness against them. It can be done. Once they break the law, they violate due process and the Constitution, they become antithetical to the Constitution and the court. They lids r immunity, and that’s when you can use it all against them.

      When the dismissal goes into our court record, hopefully this week, we will hopefully start a YouTube channel or something to get the word out about how to do it. Once we started on the path, it took us 8 months.

      Start at howtowinincourt.com and use AI. We can turn this whole damned thing around together!

      Two new advocates with a winning system, a purpose, and determination to help others have now joined the ranks of those like you who came before us and suffered so much along the way. We want to stand on your shoulders and lift everyone up. Let’s beat them with their own laws in their own courts and their own words used against them together. It can be done!

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      • After 10 1/2 years of studying, determined to rescue my son from this nightmare, all his lifes energy stolen, abuses too many to list them all. Your comment is inspiring, Thank You so much for every word of it. May the full force of Almighty God in Heaven be with you, and impower you.
        Diana Sharp on Northern Utah Land.

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  2. Money makes for carnivorous children and also often carnivorous parents. The word love is bandied about so easily. I love books – I love Costa Coffee. I love this or that person, parent or child. But money often shows our true colours which is the one lonely virtue of money. But as a proxy for social power on an Earth and in a humanity destroyed by social power, money is a proxy for ego today, which means karmic debt, which means great sorrow.

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  3. Great article. I do a podcast on this topic. Last week my biggest audience was China. Often Cuba and Russia are listening with big numbers. These tragic and true stories are being used as anti American propaganda. It is sad these countries may be our only hope to expose this corruption. I fear our government which is aware of this crime and does nothing will continue to do nothing until the exposure is about to bring embarrassment to our nation.

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    • See my comment about how our case getting dismissed. Would love to talk to you. We can turn it around by using our great Constitution, standing on our rights, and fighting the corrupt Cabal with the great laws of our land that are being abused. If we word it correctlynon the podcast, we can turn the tables on their propaganda because we use the precious rights we Americans have as the tool to fight the ones who are breaking their oaths to the Constitution. Once the dismissal is on the record, we will go public.

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    • This is yet another heartfelt and concerned article WHICH ENTIRELY MISSES THE POINT. The problem is a judicial one, not one of various bad apple guardians and lawyers. The fix is a judicial one, requiring judicial accountability. All of the heartfelt articles in the world won’t make a whit of difference until we have a system in which the decider, who is the judge, can be held accountable for approving these atrocities.

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    • I have a story. My husband was murdered the same way probate didn’t give me custody till it was too late. Please contact me if you want to discuss this on your podcast. I’m pretty well known all over the world. Iman’s army is something I started in 2021 when my husband was kidnapped by his estranged sisters.

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  5. (this is not legal advice and I’m not a lawyer. This is our story, and a path forward.) On the day after you posted this, my husband and I got his mother’s case dismissed for lack of jurisdiction. We fought the Cabal, dumped our attorney and went pro se, filled the court record with the truth (thousands of pages) about their violations of due process and the statute (or CRIMES), used ClaudeAI, learned/memorized the law, accused them all of treason, basically threatened going to a higher court by filling the court record with the truth… And won.

    The entire thing from the moment we dumped our attorney took 8 months. Would’ve been less if we didn’t have a retired judge who only had hearings once a month. We used the law against them. You cannot do that unless yo go pro se. See howtowinincourt.com. We used their principles and won!

    AI and pro se litigants will destroy the guardianshio cabals using these tactics across the country.

    Judges HATE the threat of the higher courts. AI and all our filings scared the crap out of the judges.

    If a judge is breaking the law, they cannot continue their case. A higher court will stop them. But the have to know about it and you can only go higher if you fill the court record. If you don’t fill the court record, then there is no threat to the judge.

    Lawyers don’t want to threaten judges. They don’t like to fill the court record because they have to work with the judges all the time. The judges will retaliate and threaten them and their bar card. You don’t have a bar card to threaten. So, threaten the judge back. Get their crimes on the record. Transcribe the hearings and put it into the record.

    The thing is, the people breaking the law (attorneys, judges, g/cs, the Cabal) CANNOT use AI for themselves (yet) because AI cannot tell them how to break the law. AI will only tell you how to fight the law breakers. AI can only tell you how to follow the law. When they try to figure out a way to fight you when you are following they law, they cannot get the help of AI because it cannot and will not do it. You have to learn how to ask the right questions, etc, but if you can use PaxtonAI, ClaudeAI (cheapest) or WestlawAI, they are expensive, but FAR cheaper than lawyers. (Always do your own research to ensure the info from the AI is correct since they are not connected to the internet and may not have the absolute latest information and can sometimes get confused.)

    If you go pro se, do not submit yourself to the jurisdiction of the court if you’re not the petioner. File as a limited appearance interested party. Do not ever submit to their jurisdiction. Some may lie to you and tell you you HAVE to get an attorney. They do it to force you to submit to their jurisdiction. Did you know that when you hire an attorney, you are literally declaring yourself incompetent to practice law and you lose all your rights in that court room? Don’t do it! Stand on your rights! Accuse them of not allowing you or your parent due process!

    Once a judge violates due process, they effectively lose jurisdiction of the court and your case should be dismissed! The only way to do this in g/c cases is dump your attorney!

    Don’t be scared of the judge anymore. They intimidate, they violate, they threaten… They can throw you in jail…. But most of the time, they don’t do it legally and you can sue them. If they break the law, they lose immunity. If they violate the constitution, they lose immunity. Know your rights!

    But you can threaten back. If you do it with a smile on your face and be calm, they can’t do much. You must force their own laws on them. It can be done!

    Hubby and I want to help. This just happened Friday the 13th, and we need to wait until the dismissal is put into the court record. Then we want to help others while we sue the attorneys, the judges (none of them have immunity since they never had jurisdiction), the county, the state, and take it to the FBI to go after the state.

    Please, all of you, start going to howtowinincourt.Com. It saved us. We followed its principles and worked! Use AI to help you.

    And then do not let the judge or any of them break the law ever again. File their crimes into the court record. Get hearings to confront them about it. Get everything you can into the court record. Blast the crap out of the court record. Yes, it can drain the estate more, but once you get the crimes on the record, and your evidence of their crimes, they start to get scared and will start behaving differently. It will be a learning experience for you, but you must not use an attorney. You can do it!

    The lower courts are the ones doing this. The higher ones tend to be the ones that will stop the bleeding. You CAN go pro se all the way to the Supreme Court as pro se and win! It happens more than you think!

    We will be coming out to help others in this once the record reflects the dismissal.

    But in the meantime, do go to that site howtowinincourt.com and use one of those three AIs. WestlawAI is the best and the most expensive. Don’t let the judges tell you you can’t use AI. It’s a lie. They don’t want you to. Don’t tell them you are. Always double check their results. If you use Claude, compliment it a lot and thank “him.” Tell it you’re pro se and have been screwed over by lawyers and it will stop telling you to consult an attorney. Make sure you’re nice to it cuz in our experience that seems to make a difference in its responses and willingness to help. Treat it like a human with decency and it will WANT to help you, tho it claims it doesn’t have feelings. With Paxton and Westlaw, you have a better option of uploading more filings to it and having it evaluate your entire case file. Claude is limited and you have to do it in multiple conversations and every conversation is new. It doesn’t “remember” your conversations so you have to tell it what’s going on again when you start a new conversation. Tell it your story and it can tell you, based on your state, how many federal and state crimes, constitutional violations, rules violations there are.

    There is a path forward and through!

    Ps judges absolutely DESPISE it when you accuse them of not having jurisdiction. They and the attorneys will fight that accusation with their entire being because they lose their immunity and can be sued and criminally prosecuted. So they will tell you they do have jurisdiction. Just keep doing it. We had to tell them in every single filing for months that the court didn’t have jurisdiction until they were finally forced to admit it. And they tried to stubborn perjury to get it, too,and then billed the estate for the time they took to stubborn it.

    Oh! Start doing records requests of your judges! That will scare the shit out of them too. Ask for any email and voice communication of your judges and the attorneys, use keywords for your case, your loved ones names, ask for their notes, etc. It may cost you depending… We asked for all the ex parte (didn’t word it that way) emails alone between all the parties and the two judges in our case… You know hoe many there should be? Zero. We are told there are over 250 pages of it. We have not received them yet. They’re being redacted.

    Any court-appointed officer is subject to this. Get the guardians’ emails, the visitor, the GAL…. It’s like a FOIA only for your state. They won’t want to do it. You’ll get the usual “not me!” run around of the typical government employee game. But it’s required by law in every state.

    It’s against the law for them to delete it. Some places only keep emails 2 years, so start now. Start small to see how it goes and how much it will cost. Ours does the first 100 pages for free. So, do it in small chunks per request.

    Ex parte communication is illegal if all parties are not being included. They never think they’ll get caught because they don’t get caught.

    Friends, join me. Let’s catch them all in their own game and use the law, to which they swore an oath, against them.

    Will reveal who we are as soon as the dismissal is on the record officially. Hopefully this week.

    You can do it!! There is hope friends!

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          • I’m sorry, I can’t reveal it just yet. We got the case dismissed on 9/13, but the magistrate is a retired judge and we just found out he is out until mid October, so he won’t be signing the judgment until then, nunc pro tunc. The attorneys on the case with no jurisdiction are unbelievably fighting to word the judgment to their liking, which of course, we are fighting. So, until the dismissal is official in the court record, I have to remain anonymous. Then, once official, I will be able to speak freely. Don’t worry. We are committed to helping others. We definitely want to help all who we can. Once that’s in the record and it’s officially over, I’ll be putting out an email address where others can contact us to get our story and we can tell them about our ideas on pro se legal issues for guardianship cases. We can’t wait to share our ideas (non-legal advice, of course!). We’ll join some fB groups, and hopefully eventually get a youtube channel going as well.

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    • Would you kindly at least tell us for now what state this is in? I think that would be helpful for now and thank you for taking the time to share, reply and recommend as far as what you wrote. I’m more than appreciative of your “note” but even more so for the hope ☺️

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      • In Idaho. I asked AI the other day to rank the states in order of protecting against predatory guardianships, and Washington ranked #1 due to their UGACOPAA, and idaho is 45th.

        The posts I made showed our specific strategy. Go Pro Se, use AI, learn your g/c statutes, rules of civil procedure, rules of professional conduct, fill the court record with affidavits, declarations, fill it with THE TRUTH, fill it with all their criminal activities (use AI to write it and take the emotion out of your filings), call out all the statutory violations, constitutional violations, stand up to the judge, don’t let them practice law from the bench, force them to follow the law. If they try to silence you, stand up and force them to recognize you. If they say you can’t speak, tell them they don’t have to listen, but you want your statements on the record. They HAVE TO let you. They can’t tell you “no” without violating your due process rights. They can’t make you stop putting things in the court record. File briefs about the law. Read the Elder law commons on Marquette’s that relates to your case. If you start doing that, they will. See your plan to go to a higher court. You can only go to a higher court if you get stuff ON THE RECORD, and IN THE RECORD. The judges are terrified of higher courts. So get it all in the record.

        What state are you in? What’s your story?

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  6. I want to caution on the other side, caution against use of global legal concepts like “guardianship”. This story is indeed horrific, tragic in vilifying and disempowering a caring daughter, because her sibling has joined the legal forces that use definitions on paper, instead of close study and even testing of claims in real life.

    But in America’s love of freedom and dislike of “control”, we lose the conversations needed to help others in vulnerable times. Sadly, when you commit ideas to written words and run them through the legal system, you rigidify concepts and pass along cliches which apply in that setting, but add harm in others. Life needs local input, feedback from bottom up, support at the immediate level, if we had that in our helping systems, the caregiver sister’s work would be part of the record and her need for support well known.

    But I’m a similar victim of sibling arguments about care, and was harmed for years by societal systems negative attitudes towards “guardians”. My youngest brother was born with developmental disabilities. Taught by family who did not understand how to teach, that he was a “good boy”, even if he often left projects unfinished, he grew up isolated, without practice in pitching in, following through on any assignment outside of school.
    Our home was always miles from town, so he lacked peers or other teachers – distance is a perpetuator of ignorance, and we need to identify this far more often, for when people live far, or are estranged, the day to day gains and losses, the sacrifices and choices, are invisible to anyone far away.

    I offered to try to help this brother when he was 24 and I was 32, as I had learned that help to meet slow change, could be effective. Help to organize a learning plan, where skills in navigating in any workplace, could allow him to stay safe and join any adult world. Otherwise 70% of these members of society live at home their whole lives. Emerging takes transitions.

    I learned to experience transitions in a drug and medication free therapeutic community residential program designed by ex drug addict prisoners. They knew that drugs are not the solution offered. They knew that addicts can pull the wool over the eyes of professionals and relatives, but getting the drugs often means winning the battle, while losing the war. They saw that there were very few old drug addicts.

    I loved the lessons in social cooperation that they helped us learn, for I had grown up isolated also, and after I left, with new understanding of the values of visible cooperation and also confrontation – I felt ready to live more strongly myself.

    I offered to try to help my disabled brother leave home, and my mother sent him to me, but all along the way, I found my efforts second guessed by experts or their implementers, who had no system for including “family” wisdom. He needed a guardian. It was a myth to spin a narrative that he could make all his own choices, for some of those choices meant saying yes or no to gigantic institutional settings for help or neglect – he could not tell the difference. Reality was that social workers or other professionals guided him to make choices he could not understand, and many of those barely knew him at all.

    I took seriously my effort to help him learn what he needed, so that his progress in any work or community would not be so frequently interrupted by the disruptions that made him lose ground, lose the learning he had gained, doubt himself, for he would be called “a problem”. His progress could be disrupted in multiple ways: seizures, aggressive episodes, his own dropping out, program changes and staff changes, his clumsiness left him vulnerable to falling. I fought to have his positive motivation and efforts noticed, in a medically oriented system of services that tracked errors or incidents reported by others, but did not track his positive efforts and slow progress.

    He needed someone to keep their eye on the ball, not get lost in interventions over errors that occurred for multiple reasons never formally identified. For him, it would have been much easier for me, if I was his official guardian. Instead, I did all the work that a good guardian would do, at great personal cost in time but I believed in his ability and wish to learn, and saw how the system studied dangers and isolated instances, where I noted through time, where his disruptions grew less and he began slowly to trust his good reputation and live at his pace, keeping him supported in walking, even in a nursing home at the end.

    So I think we need more attention to managing “guardianship” with time limits maybe, with reports from guardians needed on a regular basis and interpreted by someone or a group who know the individual and know about competence, so that when control against big bureaucracies so disjointed is needed, an individual has an advocate whose worth to the party, is determined by fuller family conversations about the nature of success, and what is needed to support it.

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    • 100% if we could have trained, sensitive caregivers in these roles it makes so much sense and could help and extend the lives of our loved ones. Why does our system have to take that right away from us? Thank you for sharing your story Cassie. I wish you land your family only the best in finding care for your loved ones. I was shocked and saddened as I learned about the ways of many guardians. I only hope for heroes in this story

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