May 27, 2025 • 30 mins
Geri Clark, Resource and Advocacy Manager at Treatment Advocacy Center, shares her devastating journey of losing her son to severe mental illness while navigating a broken treatment system that wouldn't help until it was too late. She reveals critical gaps in our mental health system and explains how legal barriers, misunderstood medical conditions, and insufficient family support create deadly consequences for those with severe psychiatric disorders.
• Son experienced his first psychotic break at 19 while attending college on a debate scholarship
• After a four-year struggle with severe mental illness, her son took his own life in 2019
• Anosognosia is a neurobiological symptom where the brain cannot perceive its own illness
• Current mental health system requires evidence of harm before providing involuntary treatment
• Treatment standards based on legal criteria rather than medical need lead to preventable tragedies
• Insurance companies create "ghost networks" of mental health providers who aren't actually available
• Families are often excluded from treatment decision-making despite being primary caregivers
• Prolonged exposure to untreated psychosis causes brain damage and reduces recovery chances
• Some states now include psychiatric deterioration in their criteria for involuntary treatment
• Treatment Advocacy Center works to develop grassroots advocates pursuing legislative change
• Mental health crises receive far less urgent response than medical emergencies like strokes
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:05):
Welcome to why Not Me ?
The World Podcast, hosted byTony Mantor, broadcasting from
Music City, usa, nashville,tennessee.
Join us as our guests tell ustheir stories.
Some will make you laugh, somewill make you cry.
Their stories Some will makeyou laugh, some will make you
(00:30):
cry.
Real life people who willinspire and show that you are
not alone in this world.
Hopefully, you gain moreawareness, acceptance and a
better understanding for autismAround the World.
Hi, I'm Tony Mantor.
(00:52):
Welcome to why Not Me?
The World Humanity OverHandcuffs the Silent Crisis
special event.
Joining us today is Geri Clark,resource and Advocacy Manager
for TAC, the Treatment AdvocacyCenter.
She's here to discuss her roleand what led her to work with
the center.
She possesses a wealth ofknowledge and we're pleased to
have her on the show.
Thanks for coming on.
Speaker 2 (01:14):
Well, thank you for having me on.
Speaker 1 (01:15):
Oh, it's my pleasure.
Can we start off with what youare doing now?
Speaker 2 (01:20):
Sure, my title is Resource and Advocacy Manager.
I work for a national nonprofitcalled Treatment Advocacy
Center, and we are a smallorganization with the mighty
goal of advocating for changesin treatment laws and policies
and practices that are creatingreally significant barriers to
(01:42):
treatment for individuals withthe most severe mental illness
conditions, such asschizophrenia, severe bipolar
disorder and severe depressionthat would include psychotic
features.
Speaker 1 (01:55):
What led you to get into this line of work?
Speaker 2 (01:57):
I had a son with severe mental illness.
His first psychotic break wasat age 19, when he was a college
freshman with a reallypromising future.
He had been a state champion inspeech and debate when he
finished high school, went offto college with a debate
scholarship and in the middle ofhis freshman year, experienced
(02:21):
a psychotic break that broughthim home.
He deteriorated extremelyrapidly and I started to learn
about the inequities in thetreatment system and the poorly
organized treatment system inthe hardest way possible.
I didn't know anything aboutpsychotic disorders before my
(02:41):
son was in front of me having apsychotic break, so I learned
everything I needed to know alittle bit too late in the
process of trying to guide myson through his illness.
He struggled for about fouryears before taking his own life
in 2019.
Speaker 1 (03:00):
Wow, I'm sorry to hear about that.
That's a tough thing to take.
What led up to this?
What did a psychotic episodelook like for your son?
Speaker 2 (03:10):
Initially he came home from college deeply
paranoid about spirits that weretrying to harm him and us.
The most profound example Ihave is he decided that our
downstairs bathroom had beenpossessed and he did some kind
(03:32):
of strange ritual in there andthen closed the door and made me
promise that no one ever wouldgo into that room again.
Speaker 1 (03:41):
It's my understanding that one in eight people around
the world have some sort ofmental disorder.
I also understand it doesn'thappen overnight.
It often takes a while beforeit actually surfaces.
Now, looking back at your son,is this something that developed
over time, or did it happenquicker than you expected?
Speaker 2 (04:02):
Yes and no.
There are symptoms of ancalming psychotic break and
those symptoms are referred toas prodomal.
Sometimes they're only evidentin hindsight and I would say in
my case it was mostly onlyevident in hindsight, especially
because he was a collegefreshman.
(04:23):
So there are a lot of changeshappening in a person's brain,
in their personality, aroundthat age anyway, but that is
sort of a typical age of onset.
In hindsight I can see that hewas withdrawing, he was starting
to be more anxious than he usedto be.
Again, he also was a collegefreshman.
(04:45):
What college freshman is notanxious, right?
So yes, there had been somesymptoms.
My son also suffered fromTourette's syndrome, which he
had had from age six, whichcreated a lot of issues for him.
He overcame that and, as I said, he became a state champion in
extemporaneous speaking.
So he really did overcome histurrets in a way that was quite
(05:08):
remarkable.
I do believe that there weresome linkages in terms of his
brain having some struggles.
You know, was it braininflammation?
Was it some kind of anautoimmune response to viruses
or bacterial infections?
I still have a lot of questionsthat were never answered by the
medical community, for the mostpart when he fell ill with a
(05:33):
psychotic illness.
It happened pretty much allwithin a week.
Speaker 1 (05:38):
Once all of this had started, what was your pathway
to try to get him back on trackfor better mental health?
Speaker 2 (05:46):
I'm going to tell you what happened to us, but I'm
also going to tell you thatthere is no good pathway for
anyone in that situation as afamily member.
Most communities are going totell you to take somebody like
that or somebody in thatsituation to an emergency
department, and emergencydepartments are poorly equipped
(06:07):
to manage psychiatric crises fora range of reasons.
In our situation we had afriend who was a family doctor,
who knew us and knew our son andwhen I called, was willing to
see him fairly quickly in orderto get him initially medicated.
So we were a little bitfortunate in that I was able to
(06:31):
get him in.
She diagnosed severe bipolardisorder with psychotic features
right away and prescribedlithium that did help his
symptoms in the short term.
There's a lot of complicatingfactors with psychiatric
medications, one of which is theside effects are undesirable
(06:53):
and my son really didn't likethe way the lithium made him
feel.
But also that family doctor wasnot the right person to do all
of the follow-through care.
So we transferred to apsychiatric nurse practitioner
who was kind of at the end ofher career and not terribly
invested One aspect of thesevere mental illness treatment
(07:17):
system that the general publicis probably not aware of is that
insurance companies will oftengive you a list of providers in
your network area that do thetype of treatment that you're
looking for In psychiatry.
Those lists are often full ofproviders who are no longer
(07:38):
taking new patients, won't takethe diagnosis code, won't treat
someone with a very severecondition.
So those lists are referred toas ghost networks, and the ghost
network that I got from ourinsurance company had about 30
names on it and none of themwould take my stuff.
Speaker 1 (07:59):
What were some of the things they tested him for to
create that diagnosis that theyultimately gave you?
Speaker 2 (08:06):
That's a really good question because I don't know
that the diagnosing in thepsychiatric world is all that
sophisticated.
My son's thoughts and speechwere all over the place when he
went in to talk with our familypractice doctor that very first
time.
He was just all over the placein what he was talking about and
(08:27):
he was making connectionsbetween random things that
really didn't make sense if youwere listening for understanding
.
So she was able to explain toboth of us that he seemed to be
having a flight of ideas.
Another term for that is wordsalad.
She didn't use that term in themoment but I learned that term
(08:50):
later.
So his speech was quite manic.
It wasn't that hard to figureout what was going on.
Speaker 1 (08:57):
Once you got past the ghosting of it all, what was
the next step to try to getaround that obstacle?
Speaker 2 (09:04):
Well, we worked with the psychiatric nurse
practitioner for a while, but myson's commitment to taking his
medication was limited by theundesirable side effects, but
also by a symptom of illnessthat I didn't understand at the
time but I have since learned isreferred to as anosognosia, and
(09:27):
this is a really important termto understand.
So anosognosia is aneurobiological symptom of
severe mental illness.
Estimates are that it's presentin at least half of cases of
individuals with schizophreniaand something around 40% of
individuals with severe bipolardisorder.
(09:48):
So anosognosia, again, is asymptom of illness that means
the person's brain is unable toperceive its own impairment.
So the person knows they arenot sick.
It is not denial, it is thebrain's inability to see that
there's a problem.
(10:08):
So a person with anosognosiawill know that they are not sick
and that the problems in theirlives are related to external
causes.
So they'll blame other people,circumstances, for what seems to
be blowing up their life, whenin fact what's going wrong is in
their own brain and their owninability to distinguish between
(10:32):
reality and their perception ofwhat is happening.
Speaker 1 (10:36):
I spoke with a lady just the other day.
She brought up the same termthat you just mentioned.
If I remember correctly, Ithink it took her about three
and a half years to get her sontreated in such a way that there
were no reoccurring issues thatpopped up.
I believe it's been about ayear now.
He's been really good with hismedication.
(10:58):
What's the process to get thattreatment and find it so they
can take advantage of it, soultimately it can help them.
Then after a while they startcoming back to maybe not exactly
what they were, but better thanthey are at this point in time.
Speaker 2 (11:17):
It's a really important question.
There are two doorways into thetreatment system.
There's a voluntary door andthere's an involuntary door, and
a person who lacks insight intotheir condition will almost
never go through that voluntarydoor.
The only way that someone mightbe motivated to go through the
(11:39):
voluntary door is if they have along history of evidence
helping them connect treatmentto a higher quality of life and
a trust and willingness to letother people help them find
treatment, because somehow theyhave become motivated to do it,
(12:02):
because they think maybe they'llhave a higher quality of life.
That is a heavy lift.
So for most families orcaregivers whoever the caregiver
might happen to be they've gotto somehow help their loved one
access treatment through theinvoluntary door.
And every state has its own lawsregarding involuntary treatment
(12:24):
.
Generally, what is required isan extreme level of illness that
involves an emergency, whichusually means there's a victim,
because most states requireevidence of harm.
So that usually means a suicideattempt.
So that usually means a suicideattempt.
A homicide attempt or some kindof major assault is required
(12:49):
before involuntary treatment isavailable.
Speaker 1 (12:54):
So how do we change that?
It only makes sense to me thatsometimes we have to use common
sense, and that doesn't get usedmuch.
It's kind of like the policesaying, well, we'd love to help
him, but we can't because nocrime has been committed yet.
However, we know that that pathis where it's leading to.
(13:16):
So how do you get thatinvoluntary help so that person
doesn't create a problem, sothat way he avoids the law and
ultimately gets the help that heneeds?
Speaker 2 (13:31):
Our state laws need to account for psychiatric
deterioration, and there aresome states that now have
standards that allow forpsychiatric deterioration as an
entryway into involuntaryservices.
So if a person presents sodisconnected from reality that
(13:53):
it seems evident that they willsoon be at risk for harm, they
can be treated involuntarily,even when they can't understand
their situation, if the lawallows for that psychiatric
deterioration as a criteria.
That is the beginning.
What's happened across thecountry is that we no longer
(14:16):
have treatment standards basedon someone's medical needs.
We have treatment standardsthat are based on legal criteria
, and the legal criteria thatrequire dangerousness have
gotten so extreme that theyrequire evidence of harm, which
(14:37):
in effect means they requireharm and violence instead of
preventing harm and violence.
But the psychiatricdeterioration standards can
shift that.
Speaker 1 (14:49):
So now, with that said, you are working for a
company that is advocating forsome of those changes to be made
.
What are some of the thingsthat you do, if not daily,
weekly or whatever the timeframe may be, to work on getting
some of those changes done, soit's better for everyone
involved?
Speaker 2 (15:09):
Thanks for asking.
First of all, I spend a bit ofmy workday talking to families
across the country about theircircumstances and how they're
attempting to navigate thesystem that exists.
Circumstances and how they'reattempting to navigate the
system that exists.
So I get an earful every dayfrom family members stuck in
situations as dire as thesituations that I went through
(15:32):
as a family member myself.
So I'm boots on the groundtalking to families about the
reality of the situation acrossthe country.
I also help to manage acommunity resource center on the
website for Treatment AdvocacyCenter where we provide
information to help families andindividuals who are attempting
(15:53):
to navigate the services.
So, for example, we have anarticle on the criminal legal
system and how to try tonavigate that.
We have an article about HIPAAconfidentiality laws and a lot
of misunderstandings aroundHIPAA laws are explained in that
article.
And I also support TreatmentAdvocacy Center's work to
(16:18):
develop grassroots advocatesacross the country who are using
their stories to try toinfluence change in the system
to try to make a more sensibletreatment system.
For example, right now I'mworking closely with a group of
families in the state of Oregonwho are going to rally in the
upcoming legislative session totry to get Oregon lawmakers to
(16:42):
better define dangerousness instatute.
Dangerousness can make a littlebit more sense if you have a
psychiatric deteriorationstandard that defines what
mental incapacity mightlogically lead to dangerousness,
so that again we can preventharm when somebody is really,
(17:05):
really sick instead of waitingfor harm to happen.
And I can give you an examplethat's quite heartbreaking.
So trigger alert.
One of my Oregon familyadvocates has a son with severe
schizophrenia, paranoia,delusional thinking, quite
unwell, and his mother becameguardian, was able to get him
(17:27):
hospitalized but the hospitalrefused to medicate him against
his objection, despite floridpsychosis, they sent him home
still extremely psychotic and hemurdered his mother.
Speaker 1 (17:42):
Yeah, that's real tough.
It's situations like that,along with other things, with
people that have severe mentalhealth, that creates this stigma
that no one really wants totalk about, and I find a lot of
people do not want to acceptthat it's actually there.
It seems like it's always goingto be until people start
getting a better understandingabout it that the whole
(18:05):
perception they have will stillbe there.
How do we beat that?
How do we create an atmospherewhere it's not something that
people are afraid to talk about?
Then, of course, if somethingdoes happen, we have to make
sure that it doesn't getoverblown, so it doesn't create
a situation where nothing canget accomplished.
Speaker 2 (18:25):
Well, first of all, I don't think there's anything
that you can do to overblow asituation of a psychotic young
man who was discharged from ahospital so sick that he killed
his mother.
You know you can't call itstigma to tell the truth.
These stories come my way allthe time.
(18:45):
They are heart-wrenchingstories and we've got to get
past being told that it'sstigmatizing to tell the truth,
service in making the generalpublic so uncomfortable to talk
about severe mental illness thatthe truth gets buried.
(19:06):
So I think the way to bustthrough stigma is to get real
about what is truly happening.
And individuals with untreatedand undertreated severe mental
illness are more likely to beviolent, and those that they are
violent against are most likelyto be family members and loved
(19:27):
ones.
These people are not criminalsand they're not violent by
nature.
They are very, very sick andtheir brains are creating
confusion in their minds.
I recently met a family and theyoung man dabbed and killed his
mother, dabbed her in the heartbecause he thought that was how
(19:48):
to save her soul.
Someone in psychosis is not aviolent person by nature.
They are completely confusedbecause their brain is
misperceiving reality and we'vegot to be able to talk about the
truth of that and admit that wewant to prevent harm instead of
requiring harm as a criteriafor treatment.
Speaker 1 (20:08):
I think what people need to know is for every bad
situation out there, there is agood situation that happens that
they need to hear about.
If they can hear the goodthings along with the
unfortunate bad things, like yousaid in here, the good things
along with the unfortunate badthings, like you said, be real,
with the truth of the goodthings that happen as well as
the bad Maybe that can helpbuild that pathway to ultimately
(20:31):
build that bridge to show thata bad situation with a person
can be overcome and turn it intogood.
Speaker 2 (20:39):
A hundred percent and there are some really
spectacular stories out there ofrecovery.
A young man that I know whoreceived assistant outpatient
treatment in Texas.
I like to think of him as whatmy son could have been if my son
had gotten what he got.
He got assisted outpatienttreatment, he got the medication
(21:02):
clozapine.
He got a team of people lookingout for him, keeping track of
him, helping get him back ontrack if he started to
decompensate again.
My son didn't get any of that.
Speaker 1 (21:16):
With everything's being said here, I think and I
think you'll agree that this hasto be addressed on a national
level.
That way, there's at least acertain set of rules that they
have to follow.
Then, if the states decide theywant to do more and make it
better, that's a good thing.
Speaker 2 (21:34):
I couldn't agree more .
I do believe that we need anational approach to severe
mental illness so that statesare accountable for the outcomes
, because the outcomes right noware horrific in almost every
state, but that information isreally not being tracked.
Speaker 1 (21:54):
When you say tracked.
Can you explain and expand onthat?
Speaker 2 (21:58):
We don't have a national database that's going
to say how many individuals withuntreated severe mental illness
are incarcerated.
Have killed family members,live under bridges.
Speaker 1 (22:12):
Yeah, it seems like there's something around every
corner that is preventing youfrom moving forward to help
these people.
Speaker 2 (22:21):
That's right.
That's right.
And the treatment systems thatwe do have for severe mental
illness I like to describe as afunnel Remember those coin
funnels where you would put thepenny in and the penny would
spin down until it finally wentdown in the bottom of the funnel
.
I feel like that's whathappened to my son Once he was
(22:41):
spinning around that funnel.
The system was just watchingand waiting for him to fall down
through the hole in the bottomand down through that hole.
We have social security systemsthat don't give you a very high
quality of life.
We have Medicaid systems thatdon't give you access to the
most sophisticated type of care.
(23:02):
We have homelessness systemsthat might get you a shelter or
a tent but rarely help you getinto the kind of supportive
housing that's really needed fora long-term recovery and a
higher quality of life.
Speaker 1 (23:18):
It's kind of sad.
I think people have aperception in their mind of all
these people and the issues thatthey can have because they see
it on TV or in the movies.
Like I tell a lot of peoplethat I work with here in
Nashville, it's not like themovies.
Speaker 2 (23:36):
It's not like the movies.
Speaker 1 (23:38):
What would you like to tell people to give them a
realistic view of what they needto know if they were ever to
encounter something like thisthat we're talking about?
Speaker 2 (23:49):
You mean what I would tell people if someone in their
family became ill, or just thegeneral population?
Speaker 1 (23:58):
no-transcript.
The main purpose of thispodcast is for people that might
not know anything about this,then hopefully they can get a
little understanding andinformation about what we're
talking about.
Speaker 2 (24:10):
Well, let me tell you an example that a coworker and
I just wrote an op-ed that wehope gets picked up somewhere.
If someone that you love showssigns and symptoms of a stroke,
you anticipate a certainresponse from the medical system
.
Right, you take them to the ED,Even if the person says I'm
fine, leave me alone, I justhave a headache, I just want to
(24:34):
take a nap.
You see their face drooping,they're slurring their speech,
you know better.
And you take them to theemergency department and there
is a team that rallies.
They have a code on theloudspeaker.
You get long-term engagementwith recovery support.
The family's engaged right.
(24:56):
If you have a loved one who hasa psychotic break, like I
described when my son came homefrom college, deeply concerned
about demons ripping around thehouse, locking off rooms,
exercising demons from our wallsIf you have someone who
suddenly falls into psychosislike that, you will not get the
(25:19):
same kind of response that youwould expect if someone that you
love was having a heart attackor a stroke.
You will get a system that sayshave they threatened to kill
themselves?
Have they threatened to killyou?
Do they have any weapons?
Is anyone harmed?
Do they want to go to thehospital.
If not, it is their civil rightto say no.
(25:42):
They're having a neurodivergentexperience, so we'll just let
them be.
If you've never been witness toa psychotic break, it is
nothing like you can imagine andyou will not get any of the
help that you would expect.
Speaker 1 (25:59):
This is definitely a subject where people need to get
a better understanding to makethings a lot better for everyone
.
Speaker 2 (26:07):
So ongoing exposure to untreated psychosis worsens
the condition and makes it lesslikely that the person will
(26:28):
recover in the long term, whichis what happened to my son, and
I watched the brain damage occurover four years.
His chances for recovery weremuch better at the beginning,
but we kept being told he had tobe much sicker before he would
be eligible for services.
Speaker 1 (26:45):
Yeah, and then when he does get sicker, it's at the
end where he could have beenhelped.
Speaker 2 (26:51):
Correct, that's correct.
And when he was his sickest, hewas incarcerated, not
hospitalized.
Speaker 1 (26:58):
Right, right.
We definitely have to get moreknowledge and more help out
there to better help thosepeople that need it.
Speaker 2 (27:06):
The other area that is really lacking in appropriate
understanding is the area offamily engagement.
There's this misunderstandingin the system that families have
given up, that families don'tcare or that families actually
caused these illness conditions,and that is incorrect.
And I know that because I talkto families all across the
(27:28):
country who are doing everythingin their power to save their
loved ones.
I talk to family members whohave been almost murdered by
their loved ones in psychosis,but they are still doing
everything they can to save thelives of those loved ones.
Family engagement is reallypoor across the system.
(27:49):
Hipaa is badly misunderstoodacross the system.
Families are in it for the longterm and they need to be
engaged as allies in the care oftheir loved ones, but they also
need to be equipped with theright information and the right
support so that they cancontinue to do what they want to
(28:09):
do, but they become unable todo because the system is so
lacking.
Our son was living in our home.
Our health insurance, we werepaying for everything, but the
system kept telling us he wasn'tsick enough for anything, so we
weren't getting any of thesupports or information we
(28:30):
needed to continue to supporthim.
They told us that he needed tobe homeless.
He needed to have a trackrecord of incarcerations, crises
, suicide attempts.
He had to check all the traumaboxes before he would be
eligible for the things at thebottom of that funnel that might
help.
(28:50):
But yeah, by then he was sounwell that his illness really
wasn't going to respond as wellto treatment.
He still could have survived ifthe services had been more
robust, but they weren't.
Speaker 1 (29:05):
Yeah, and that's very sad.
Well, this has been great tohave you on.
Lots of great information,great conversation.
I truly appreciate you takingthe time to come on my podcast.
Speaker 2 (29:17):
You're very welcome.
I really appreciate theopportunity to speak with you.
You've got potential to makesome real impact.
I really appreciate youinviting me on to talk about
severe mental illness.
Speaker 1 (29:27):
It's been my pleasure .
Thanks again.
Thanks for taking the time outof your busy schedule to listen
to our show today.
We hope that you enjoyed it asmuch as we enjoyed bringing it
to you.
If you know anyone that wouldlike to tell us their story,
(29:50):
send them to tonymantorcomContact then they can give us
their information so one daythey may be a guest on our show.
One more thing we ask telleveryone everywhere about why
Not Me, the world, theconversations we're having and
(30:13):
the inspiration our guests giveto everyone everywhere that you
are not alone in this world.
You.
Welcome to why Not Me ?
The World Podcast, hosted byTony Mantor, broadcasting from
Music City, usa, nashville,tennessee.
Join us as our guests tell ustheir stories.
Some will make you laugh, somewill make you cry.
Their stories Some will makeyou laugh, some will make you
(00:30):
cry.
Real life people who willinspire and show that you are
not alone in this world.
Hopefully, you gain moreawareness, acceptance and a
better understanding for autismAround the World.
Hi, I'm Tony Mantor.
(00:52):
Welcome to why Not Me?
The World Humanity OverHandcuffs the Silent Crisis
special event.
Joining us today is Geri Clark,resource and Advocacy Manager
for TAC, the Treatment AdvocacyCenter.
She's here to discuss her roleand what led her to work with
the center.
She possesses a wealth ofknowledge and we're pleased to
have her on the show.
Thanks for coming on.
Speaker 2 (01:14):
Well, thank you for having me on.
Speaker 1 (01:15):
Oh, it's my pleasure.
Can we start off with what youare doing now?
Speaker 2 (01:20):
Sure, my title is Resource and Advocacy Manager.
I work for a national nonprofitcalled Treatment Advocacy
Center, and we are a smallorganization with the mighty
goal of advocating for changesin treatment laws and policies
and practices that are creatingreally significant barriers to
(01:42):
treatment for individuals withthe most severe mental illness
conditions, such asschizophrenia, severe bipolar
disorder and severe depressionthat would include psychotic
features.
Speaker 1 (01:55):
What led you to get into this line of work?
Speaker 2 (01:57):
I had a son with severe mental illness.
His first psychotic break wasat age 19, when he was a college
freshman with a reallypromising future.
He had been a state champion inspeech and debate when he
finished high school, went offto college with a debate
scholarship and in the middle ofhis freshman year, experienced
(02:21):
a psychotic break that broughthim home.
He deteriorated extremelyrapidly and I started to learn
about the inequities in thetreatment system and the poorly
organized treatment system inthe hardest way possible.
I didn't know anything aboutpsychotic disorders before my
(02:41):
son was in front of me having apsychotic break, so I learned
everything I needed to know alittle bit too late in the
process of trying to guide myson through his illness.
He struggled for about fouryears before taking his own life
in 2019.
Speaker 1 (03:00):
Wow, I'm sorry to hear about that.
That's a tough thing to take.
What led up to this?
What did a psychotic episodelook like for your son?
Speaker 2 (03:10):
Initially he came home from college deeply
paranoid about spirits that weretrying to harm him and us.
The most profound example Ihave is he decided that our
downstairs bathroom had beenpossessed and he did some kind
(03:32):
of strange ritual in there andthen closed the door and made me
promise that no one ever wouldgo into that room again.
Speaker 1 (03:41):
It's my understanding that one in eight people around
the world have some sort ofmental disorder.
I also understand it doesn'thappen overnight.
It often takes a while beforeit actually surfaces.
Now, looking back at your son,is this something that developed
over time, or did it happenquicker than you expected?
Speaker 2 (04:02):
Yes and no.
There are symptoms of ancalming psychotic break and
those symptoms are referred toas prodomal.
Sometimes they're only evidentin hindsight and I would say in
my case it was mostly onlyevident in hindsight, especially
because he was a collegefreshman.
(04:23):
So there are a lot of changeshappening in a person's brain,
in their personality, aroundthat age anyway, but that is
sort of a typical age of onset.
In hindsight I can see that hewas withdrawing, he was starting
to be more anxious than he usedto be.
Again, he also was a collegefreshman.
(04:45):
What college freshman is notanxious, right?
So yes, there had been somesymptoms.
My son also suffered fromTourette's syndrome, which he
had had from age six, whichcreated a lot of issues for him.
He overcame that and, as I said, he became a state champion in
extemporaneous speaking.
So he really did overcome histurrets in a way that was quite
(05:08):
remarkable.
I do believe that there weresome linkages in terms of his
brain having some struggles.
You know, was it braininflammation?
Was it some kind of anautoimmune response to viruses
or bacterial infections?
I still have a lot of questionsthat were never answered by the
medical community, for the mostpart when he fell ill with a
(05:33):
psychotic illness.
It happened pretty much allwithin a week.
Speaker 1 (05:38):
Once all of this had started, what was your pathway
to try to get him back on trackfor better mental health?
Speaker 2 (05:46):
I'm going to tell you what happened to us, but I'm
also going to tell you thatthere is no good pathway for
anyone in that situation as afamily member.
Most communities are going totell you to take somebody like
that or somebody in thatsituation to an emergency
department, and emergencydepartments are poorly equipped
(06:07):
to manage psychiatric crises fora range of reasons.
In our situation we had afriend who was a family doctor,
who knew us and knew our son andwhen I called, was willing to
see him fairly quickly in orderto get him initially medicated.
So we were a little bitfortunate in that I was able to
(06:31):
get him in.
She diagnosed severe bipolardisorder with psychotic features
right away and prescribedlithium that did help his
symptoms in the short term.
There's a lot of complicatingfactors with psychiatric
medications, one of which is theside effects are undesirable
(06:53):
and my son really didn't likethe way the lithium made him
feel.
But also that family doctor wasnot the right person to do all
of the follow-through care.
So we transferred to apsychiatric nurse practitioner
who was kind of at the end ofher career and not terribly
invested One aspect of thesevere mental illness treatment
(07:17):
system that the general publicis probably not aware of is that
insurance companies will oftengive you a list of providers in
your network area that do thetype of treatment that you're
looking for In psychiatry.
Those lists are often full ofproviders who are no longer
(07:38):
taking new patients, won't takethe diagnosis code, won't treat
someone with a very severecondition.
So those lists are referred toas ghost networks, and the ghost
network that I got from ourinsurance company had about 30
names on it and none of themwould take my stuff.
Speaker 1 (07:59):
What were some of the things they tested him for to
create that diagnosis that theyultimately gave you?
Speaker 2 (08:06):
That's a really good question because I don't know
that the diagnosing in thepsychiatric world is all that
sophisticated.
My son's thoughts and speechwere all over the place when he
went in to talk with our familypractice doctor that very first
time.
He was just all over the placein what he was talking about and
(08:27):
he was making connectionsbetween random things that
really didn't make sense if youwere listening for understanding
.
So she was able to explain toboth of us that he seemed to be
having a flight of ideas.
Another term for that is wordsalad.
She didn't use that term in themoment but I learned that term
(08:50):
later.
So his speech was quite manic.
It wasn't that hard to figureout what was going on.
Speaker 1 (08:57):
Once you got past the ghosting of it all, what was
the next step to try to getaround that obstacle?
Speaker 2 (09:04):
Well, we worked with the psychiatric nurse
practitioner for a while, but myson's commitment to taking his
medication was limited by theundesirable side effects, but
also by a symptom of illnessthat I didn't understand at the
time but I have since learned isreferred to as anosognosia, and
(09:27):
this is a really important termto understand.
So anosognosia is aneurobiological symptom of
severe mental illness.
Estimates are that it's presentin at least half of cases of
individuals with schizophreniaand something around 40% of
individuals with severe bipolardisorder.
(09:48):
So anosognosia, again, is asymptom of illness that means
the person's brain is unable toperceive its own impairment.
So the person knows they arenot sick.
It is not denial, it is thebrain's inability to see that
there's a problem.
(10:08):
So a person with anosognosiawill know that they are not sick
and that the problems in theirlives are related to external
causes.
So they'll blame other people,circumstances, for what seems to
be blowing up their life, whenin fact what's going wrong is in
their own brain and their owninability to distinguish between
(10:32):
reality and their perception ofwhat is happening.
Speaker 1 (10:36):
I spoke with a lady just the other day.
She brought up the same termthat you just mentioned.
If I remember correctly, Ithink it took her about three
and a half years to get her sontreated in such a way that there
were no reoccurring issues thatpopped up.
I believe it's been about ayear now.
He's been really good with hismedication.
(10:58):
What's the process to get thattreatment and find it so they
can take advantage of it, soultimately it can help them.
Then after a while they startcoming back to maybe not exactly
what they were, but better thanthey are at this point in time.
Speaker 2 (11:17):
It's a really important question.
There are two doorways into thetreatment system.
There's a voluntary door andthere's an involuntary door, and
a person who lacks insight intotheir condition will almost
never go through that voluntarydoor.
The only way that someone mightbe motivated to go through the
(11:39):
voluntary door is if they have along history of evidence
helping them connect treatmentto a higher quality of life and
a trust and willingness to letother people help them find
treatment, because somehow theyhave become motivated to do it,
(12:02):
because they think maybe they'llhave a higher quality of life.
That is a heavy lift.
So for most families orcaregivers whoever the caregiver
might happen to be they've gotto somehow help their loved one
access treatment through theinvoluntary door.
And every state has its own lawsregarding involuntary treatment
(12:24):
.
Generally, what is required isan extreme level of illness that
involves an emergency, whichusually means there's a victim,
because most states requireevidence of harm.
So that usually means a suicideattempt.
So that usually means a suicideattempt.
A homicide attempt or some kindof major assault is required
(12:49):
before involuntary treatment isavailable.
Speaker 1 (12:54):
So how do we change that?
It only makes sense to me thatsometimes we have to use common
sense, and that doesn't get usedmuch.
It's kind of like the policesaying, well, we'd love to help
him, but we can't because nocrime has been committed yet.
However, we know that that pathis where it's leading to.
(13:16):
So how do you get thatinvoluntary help so that person
doesn't create a problem, sothat way he avoids the law and
ultimately gets the help that heneeds?
Speaker 2 (13:31):
Our state laws need to account for psychiatric
deterioration, and there aresome states that now have
standards that allow forpsychiatric deterioration as an
entryway into involuntaryservices.
So if a person presents sodisconnected from reality that
(13:53):
it seems evident that they willsoon be at risk for harm, they
can be treated involuntarily,even when they can't understand
their situation, if the lawallows for that psychiatric
deterioration as a criteria.
That is the beginning.
What's happened across thecountry is that we no longer
(14:16):
have treatment standards basedon someone's medical needs.
We have treatment standardsthat are based on legal criteria
, and the legal criteria thatrequire dangerousness have
gotten so extreme that theyrequire evidence of harm, which
(14:37):
in effect means they requireharm and violence instead of
preventing harm and violence.
But the psychiatricdeterioration standards can
shift that.
Speaker 1 (14:49):
So now, with that said, you are working for a
company that is advocating forsome of those changes to be made
.
What are some of the thingsthat you do, if not daily,
weekly or whatever the timeframe may be, to work on getting
some of those changes done, soit's better for everyone
involved?
Speaker 2 (15:09):
Thanks for asking.
First of all, I spend a bit ofmy workday talking to families
across the country about theircircumstances and how they're
attempting to navigate thesystem that exists.
Circumstances and how they'reattempting to navigate the
system that exists.
So I get an earful every dayfrom family members stuck in
situations as dire as thesituations that I went through
(15:32):
as a family member myself.
So I'm boots on the groundtalking to families about the
reality of the situation acrossthe country.
I also help to manage acommunity resource center on the
website for Treatment AdvocacyCenter where we provide
information to help families andindividuals who are attempting
(15:53):
to navigate the services.
So, for example, we have anarticle on the criminal legal
system and how to try tonavigate that.
We have an article about HIPAAconfidentiality laws and a lot
of misunderstandings aroundHIPAA laws are explained in that
article.
And I also support TreatmentAdvocacy Center's work to
(16:18):
develop grassroots advocatesacross the country who are using
their stories to try toinfluence change in the system
to try to make a more sensibletreatment system.
For example, right now I'mworking closely with a group of
families in the state of Oregonwho are going to rally in the
upcoming legislative session totry to get Oregon lawmakers to
(16:42):
better define dangerousness instatute.
Dangerousness can make a littlebit more sense if you have a
psychiatric deteriorationstandard that defines what
mental incapacity mightlogically lead to dangerousness,
so that again we can preventharm when somebody is really,
(17:05):
really sick instead of waitingfor harm to happen.
And I can give you an examplethat's quite heartbreaking.
So trigger alert.
One of my Oregon familyadvocates has a son with severe
schizophrenia, paranoia,delusional thinking, quite
unwell, and his mother becameguardian, was able to get him
(17:27):
hospitalized but the hospitalrefused to medicate him against
his objection, despite floridpsychosis, they sent him home
still extremely psychotic and hemurdered his mother.
Speaker 1 (17:42):
Yeah, that's real tough.
It's situations like that,along with other things, with
people that have severe mentalhealth, that creates this stigma
that no one really wants totalk about, and I find a lot of
people do not want to acceptthat it's actually there.
It seems like it's always goingto be until people start
getting a better understandingabout it that the whole
(18:05):
perception they have will stillbe there.
How do we beat that?
How do we create an atmospherewhere it's not something that
people are afraid to talk about?
Then, of course, if somethingdoes happen, we have to make
sure that it doesn't getoverblown, so it doesn't create
a situation where nothing canget accomplished.
Speaker 2 (18:25):
Well, first of all, I don't think there's anything
that you can do to overblow asituation of a psychotic young
man who was discharged from ahospital so sick that he killed
his mother.
You know you can't call itstigma to tell the truth.
These stories come my way allthe time.
(18:45):
They are heart-wrenchingstories and we've got to get
past being told that it'sstigmatizing to tell the truth,
service in making the generalpublic so uncomfortable to talk
about severe mental illness thatthe truth gets buried.
(19:06):
So I think the way to bustthrough stigma is to get real
about what is truly happening.
And individuals with untreatedand undertreated severe mental
illness are more likely to beviolent, and those that they are
violent against are most likelyto be family members and loved
(19:27):
ones.
These people are not criminalsand they're not violent by
nature.
They are very, very sick andtheir brains are creating
confusion in their minds.
I recently met a family and theyoung man dabbed and killed his
mother, dabbed her in the heartbecause he thought that was how
(19:48):
to save her soul.
Someone in psychosis is not aviolent person by nature.
They are completely confusedbecause their brain is
misperceiving reality and we'vegot to be able to talk about the
truth of that and admit that wewant to prevent harm instead of
requiring harm as a criteriafor treatment.
Speaker 1 (20:08):
I think what people need to know is for every bad
situation out there, there is agood situation that happens that
they need to hear about.
If they can hear the goodthings along with the
unfortunate bad things, like yousaid in here, the good things
along with the unfortunate badthings, like you said, be real,
with the truth of the goodthings that happen as well as
the bad Maybe that can helpbuild that pathway to ultimately
(20:31):
build that bridge to show thata bad situation with a person
can be overcome and turn it intogood.
Speaker 2 (20:39):
A hundred percent and there are some really
spectacular stories out there ofrecovery.
A young man that I know whoreceived assistant outpatient
treatment in Texas.
I like to think of him as whatmy son could have been if my son
had gotten what he got.
He got assisted outpatienttreatment, he got the medication
(21:02):
clozapine.
He got a team of people lookingout for him, keeping track of
him, helping get him back ontrack if he started to
decompensate again.
My son didn't get any of that.
Speaker 1 (21:16):
With everything's being said here, I think and I
think you'll agree that this hasto be addressed on a national
level.
That way, there's at least acertain set of rules that they
have to follow.
Then, if the states decide theywant to do more and make it
better, that's a good thing.
Speaker 2 (21:34):
I couldn't agree more .
I do believe that we need anational approach to severe
mental illness so that statesare accountable for the outcomes
, because the outcomes right noware horrific in almost every
state, but that information isreally not being tracked.
Speaker 1 (21:54):
When you say tracked.
Can you explain and expand onthat?
Speaker 2 (21:58):
We don't have a national database that's going
to say how many individuals withuntreated severe mental illness
are incarcerated.
Have killed family members,live under bridges.
Speaker 1 (22:12):
Yeah, it seems like there's something around every
corner that is preventing youfrom moving forward to help
these people.
Speaker 2 (22:21):
That's right.
That's right.
And the treatment systems thatwe do have for severe mental
illness I like to describe as afunnel Remember those coin
funnels where you would put thepenny in and the penny would
spin down until it finally wentdown in the bottom of the funnel
.
I feel like that's whathappened to my son Once he was
(22:41):
spinning around that funnel.
The system was just watchingand waiting for him to fall down
through the hole in the bottomand down through that hole.
We have social security systemsthat don't give you a very high
quality of life.
We have Medicaid systems thatdon't give you access to the
most sophisticated type of care.
(23:02):
We have homelessness systemsthat might get you a shelter or
a tent but rarely help you getinto the kind of supportive
housing that's really needed fora long-term recovery and a
higher quality of life.
Speaker 1 (23:18):
It's kind of sad.
I think people have aperception in their mind of all
these people and the issues thatthey can have because they see
it on TV or in the movies.
Like I tell a lot of peoplethat I work with here in
Nashville, it's not like themovies.
Speaker 2 (23:36):
It's not like the movies.
Speaker 1 (23:38):
What would you like to tell people to give them a
realistic view of what they needto know if they were ever to
encounter something like thisthat we're talking about?
Speaker 2 (23:49):
You mean what I would tell people if someone in their
family became ill, or just thegeneral population?
Speaker 1 (23:58):
no-transcript.
The main purpose of thispodcast is for people that might
not know anything about this,then hopefully they can get a
little understanding andinformation about what we're
talking about.
Speaker 2 (24:10):
Well, let me tell you an example that a coworker and
I just wrote an op-ed that wehope gets picked up somewhere.
If someone that you love showssigns and symptoms of a stroke,
you anticipate a certainresponse from the medical system
.
Right, you take them to the ED,Even if the person says I'm
fine, leave me alone, I justhave a headache, I just want to
(24:34):
take a nap.
You see their face drooping,they're slurring their speech,
you know better.
And you take them to theemergency department and there
is a team that rallies.
They have a code on theloudspeaker.
You get long-term engagementwith recovery support.
The family's engaged right.
(24:56):
If you have a loved one who hasa psychotic break, like I
described when my son came homefrom college, deeply concerned
about demons ripping around thehouse, locking off rooms,
exercising demons from our wallsIf you have someone who
suddenly falls into psychosislike that, you will not get the
(25:19):
same kind of response that youwould expect if someone that you
love was having a heart attackor a stroke.
You will get a system that sayshave they threatened to kill
themselves?
Have they threatened to killyou?
Do they have any weapons?
Is anyone harmed?
Do they want to go to thehospital.
If not, it is their civil rightto say no.
(25:42):
They're having a neurodivergentexperience, so we'll just let
them be.
If you've never been witness toa psychotic break, it is
nothing like you can imagine andyou will not get any of the
help that you would expect.
Speaker 1 (25:59):
This is definitely a subject where people need to get
a better understanding to makethings a lot better for everyone
.
Speaker 2 (26:07):
So ongoing exposure to untreated psychosis worsens
the condition and makes it lesslikely that the person will
(26:28):
recover in the long term, whichis what happened to my son, and
I watched the brain damage occurover four years.
His chances for recovery weremuch better at the beginning,
but we kept being told he had tobe much sicker before he would
be eligible for services.
Speaker 1 (26:45):
Yeah, and then when he does get sicker, it's at the
end where he could have beenhelped.
Speaker 2 (26:51):
Correct, that's correct.
And when he was his sickest, hewas incarcerated, not
hospitalized.
Speaker 1 (26:58):
Right, right.
We definitely have to get moreknowledge and more help out
there to better help thosepeople that need it.
Speaker 2 (27:06):
The other area that is really lacking in appropriate
understanding is the area offamily engagement.
There's this misunderstandingin the system that families have
given up, that families don'tcare or that families actually
caused these illness conditions,and that is incorrect.
And I know that because I talkto families all across the
(27:28):
country who are doing everythingin their power to save their
loved ones.
I talk to family members whohave been almost murdered by
their loved ones in psychosis,but they are still doing
everything they can to save thelives of those loved ones.
Family engagement is reallypoor across the system.
(27:49):
Hipaa is badly misunderstoodacross the system.
Families are in it for the longterm and they need to be
engaged as allies in the care oftheir loved ones, but they also
need to be equipped with theright information and the right
support so that they cancontinue to do what they want to
(28:09):
do, but they become unable todo because the system is so
lacking.
Our son was living in our home.
Our health insurance, we werepaying for everything, but the
system kept telling us he wasn'tsick enough for anything, so we
weren't getting any of thesupports or information we
(28:30):
needed to continue to supporthim.
They told us that he needed tobe homeless.
He needed to have a trackrecord of incarcerations, crises
, suicide attempts.
He had to check all the traumaboxes before he would be
eligible for the things at thebottom of that funnel that might
help.
(28:50):
But yeah, by then he was sounwell that his illness really
wasn't going to respond as wellto treatment.
He still could have survived ifthe services had been more
robust, but they weren't.
Speaker 1 (29:05):
Yeah, and that's very sad.
Well, this has been great tohave you on.
Lots of great information,great conversation.
I truly appreciate you takingthe time to come on my podcast.
Speaker 2 (29:17):
You're very welcome.
I really appreciate theopportunity to speak with you.
You've got potential to makesome real impact.
I really appreciate youinviting me on to talk about
severe mental illness.
Speaker 1 (29:27):
It's been my pleasure .
Thanks again.
Thanks for taking the time outof your busy schedule to listen
to our show today.
We hope that you enjoyed it asmuch as we enjoyed bringing it
to you.
If you know anyone that wouldlike to tell us their story,
(29:50):
send them to tonymantorcomContact then they can give us
their information so one daythey may be a guest on our show.
One more thing we ask telleveryone everywhere about why
Not Me, the world, theconversations we're having and
(30:13):
the inspiration our guests giveto everyone everywhere that you
are not alone in this world.
You.
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