From Diagnosis to Detention: How Schizophrenia Changed Two Lives Forever

Welcome to Why Not Me the World? Podcast hosted by
Tony Mantor, broadcasting from Music City, USA, Nashville, Tennessee. Join
us as our guests tell us their stories. Some will
make you laugh, some will make you cry. Real life
people who will inspire and show that you are not
alone in this world. Hopefully you gain more awareness, acceptance,
and a better understanding for autism around the world. Hi,
I'm Tony Mantor. Welcome to Why Not Me the World?
Humanity over Handcuffs the Silent Crisis special event. Today we
are joined by Carly, a clinical social worker who is
stepping away from her professional role to speak to us
as a mother. Carly's child lives with a serious mental illness.
She brings a wealth of personal experience and insight that
she will share with us. We really appreciate her taking
the time. Thanks for coming on.
I'm happy to be here and I'm glad you're here too.
Really important topic and conversation that needs recognition.
If you could give us a little background on what
you do and your journey in what you've been trying
to accomplish.
I'm a licensed clinical social worker, I'm retired. My son
has was diagnosed with schizophrenia when he was seventeen. He's
now forty seven years old. We've had periods of instability
and periods of stability, and he's been in jail for
over a year now for incidences he caused to his
lack of taking his medication.
When did you first notice something was off with him?
I'm curious about the very first moment you realize he
was dealing with some personal issues that just needed attention.
When he was in his last year of high school,
he had a lot of those symptoms where he didn't
want to get out of bed, he didn't want to
do anything and or go anywhere. He stopped going to school,
and there was also the other extreme where he was
acting a little like silly and goofy and odd. This odd.
So I did bring him to a psychiatrist and they
did evaluate him and he was originally put in the hospital,
and that's when he was diagnosed with schizophrenia. Somewhere along
there was schizo effective disorder, so that's where he had.
He kind of ranges between being depressed and having some
of that mania along with symptoms of schizophrenia where he
did the paranoia and the delusions and things like that
hearing voices.
When he was a senior. You mentioned getting a diagnosis.
Once you received that diagnosis, what steps did you take
to manage it and improve the situation even if it
wasn't fully under control.
Yeah, we were referred to as psychiatrist, so we started
seeing the psychiatrist. Unfortunately, during that period of time, it
was also using drugs on beknownst to me, and that
particular psychiatrist fired him because he was he confessed to
using drugs along with his medication. We found somebody else.
We found this fabulous registered nurs Pact psychiatric registered nurs
practitioner who we sooffer many years and he did very
good for a long time.
When someone hears schizophrenia, they often assume the worst. So
during the process, when he was on his medication and
things were relatively stable, what were you going through to
help keep him on that positive path?
Well, then and now are like two different lifetimes. Right
when he's that young, Sure it wasn't as serious as
it is now. You know, when I look back to
how he is, like, I've never this past two years,
I've never seen him in such a decline, in such
state where he didn't even recognize who I was my husband,
and I have been in his you know, his stepfather
over his house weekly, helping him with groceries or transportation.
He's also in a wheelchair because he lost a leg
due to a psychotic rape he had, and so we
gave him, you know, we spent time with him and
when it was younger, eventually he got his own apartment.
We were living in South Florida, got his own apartment.
He was on his medication, but he was doing things
like rolling town in the middle of the night, like
just going out walking, Like, Nathan, you can't. You can't
be walking around at night. You're gonna get You're gonna
get in trouble. But it didn't kind of Oh, I've
talked to the place. They're fine. I tell him who
I am. And he continued that even when we moved north.
He even continued that behavior. Well, he was still able
to walk. It was just a behavior. Not sleeping at night.
Always have a hard time sleeping and managing his moods.
You know, he'd fluctuate from being depressed to being manic,
and he's doing he's an artist, he's a writer. He
plays music, writes music, and so you know he'd be
kind of like up all night creating. He'd get in
these creative moods and he'd be up and then he'd
go the other direction where you couldn't get him out
of bed to do anything.
So how is he doing now? Is he better? Is
he worse? He's he's still the same. Was his situation
look like? Now?
It's bad? I'd say about two years ago he started
playing around with his medication dosage on benownst to me,
I think this whole thing with him ending up in
jail started with COVID. So he tends to be rather
isolated anyways, but he was living in disabled housing, so
the people around him that some sort of disability. He
did have friends and neighbors he associated with, but COVID happened.
And then just coming out of COVID, there were things.
There were like small red flags where I'd be like,
what's going on here? This is a little odd. You know,
he's going to change the pictures hanging on the wall
because they were evil. That was a red flag. He
wasn't eating, he lost a lot of weight. He was
just acting not like himself. He had a bed source.
Part of this all started with bedsores where he's in
bed a lot trying to alleviate that, and I went
over one day. He said he was met, but he
didn't recognize who I was. He was in his bed,
and I called to have him Baker acted.
What happened from there?
That was a big fiasco. They wouldn't Baker act him,
even though I told him about the incident where he
did a lot of self harm a number of years ago.
He did a lot of self harm, and thankfully he
woke up and called nine one one himself. But even
with that knowledge that he was a danger to himself
and possibly the other to other people. I had to
go to the courthouse and have an expartid.
I've heard that can be a challenge. How did that go?
That was extremely stressful because this took hours. Ive I'm like,
you mean, not going to leave him in his house
where I don't know what he's going to do, go
downtown and get these papers in and wait upon the
police or whoever is picking them up, and ended up
being firemen, police and ambulance And I was terrified. We
hear stories about the mentally ill getting shot or killed
because they defend themselves. He was very aggressive, locked me out,
of the house while we were waiting, screamed and y'all
his nurse had happened to come by, screamed, and y'all
led us to get out, and it was very scary.
But they brought him to the hospital. And this was
twenty twenty three in July. He was in the hospital
for three weeks.
Did that help him at all? How was this situation
in the hospital that was horrible?
He banged his head, he had stitches, and was very aggressive.
He knocked over nurses. He did horrible things while he
was there, and I'm like, don't tell me what he's doing,
and I didn't go see him. They ended up having
to put him in the hospital because he needed stitches,
and then things got worse and they put him in
a coma. His behavior was so outrageous. They put him
in a coma for a couple of days. I went
up to see him because he was basically sleeping. I
played a music he plays. We usually play music together
so lately, and I played for him and he kind
of knew I was there. And then when he woke up,
they took him out of it. The medical director of
the ICU is where they did it, said, oh, he
can go home now.
That kind of surprises me that they was going to
let him go that soon. So how did you handle it?
What was your response?
No, he can't, he can't go home now. He can't
take care of himself. He hasn't been regulated on his medication,
so there's been this history of him being hospitalized and
they let him go too soon, like he's not stabilized
that yet, He's not at baseline yet. And so I
was able to get him back into behavioral health and
they didn't keep him long at least it was a
little bit longer. But he continued with the behavior of
I don't want to take the medication. I'm not sick.
What's the word inna so gnasia.
I have a tough time with that word too. I
think it's an his ignosia.
Yeah, so he doesn't recognize at this point that he's
ill and he needs medication. So he continued, and I tried,
you know, putting his medication, help him with his medication,
you know, his weekly thing. And at this point I
was going over every day for months. I was thinking,
you know, I had some control over this baffling and
cunning disease, right which I had no control whatsoever, But
I was trying. I could see the train wreck happening
and I couldn't stop it. It's what was happening. And
he started doing some bad behaviors in his apartment that
he'd lived in for seventeen years. He wouldn't keep his
clothes on. He was banging on people's doors all night.
He was taking mushrooms and weed. I don't know if
there was anything else but those two. I do know.
I did top to him. He wouldn't listen, and like
I said, I was. We were there every week and
he called me every day. I didn't see it coming.
This is definitely tough on him with what he's going through,
But how was you handling it? It's just as tough
for you seeing your son go down the spiral, So
how was you handling it?
I felt? I think in the end that love wasn't enough.
Love and caring and showing up literally wasn't enough to
keep him from doing what happened. He needed, we needed
social support that didn't exist. His psychiatrist ended up firing
him because he called up. He was making these awful
phone calls and saying terrible, crazy things to people, or
writing emails. I actually got a call from he at
art in a gallery. I actually got a call from
the gallery owner saying, do you know what's going on
with your son? And I said, yes, he's I'm medicated.
He's not doing well. And she shared with me the
message she left and it was just like you couldn't
even follow it. It didn't make any sense. Was angry
and said should I be afraid? And I said, I
can't tell you that. I said, if you're afraid, you
can call the police. He's in a wheelchair, he has
one leg, he doesn't have a car. But I'm not
going to tell you not to protect yourself or your people.
And so you know, he was back to was causing
a lot of trouble at his apartment complex. So he's
Baker acted at one time, Marchman acted another in the
third one that ended up in uh And this is
a matter of a few months where he actually attacked
his neighbors, which were his friends, physically attacked an elderly
lady and his friend who was his neighbor. So he
called me a few times after that. They released him
a couple of times. You know, he's not going to
get better, and you can't have a rational conversation with
somebody who's not rash by he's calling me sister something like.
He didn't know who it was, sisters.
So with all this going on, what was next? What
happened from there?
They let him go from jail twice, he got rearrested
within twenty four hours because he doesn't know what to
do or where it go. He went back to his apartment,
got rearrested there for trespassing and something else. Another time,
we put him in a hotel one night, but the
next day he wouldn't get out of the room. It's like, okay,
we've got we're going to go the homeless shelter and
these are the rules and this is what you have
to do, and so on and so forth. Yeah, that
was that was an arrest. So after those two releases
and arrests, they just kept him there and he said
several different lawyers, talking to the lawyers occasionally, the social
worker I would call every couple of weeks. He's aggressive
and non compliant and doesn't cooperate. And I believe he's
been in isolation a lot. I don't know the whole time,
but they don't Basically, in the jail. You know, if
the patient, if the client participant, whatever, want medication, they
can't force it. And no matter how many times they
said to the lawyer and sent letters to the judge.
He originally had three felonies, which would have gotten him
the help that he needed. The judge could have ordered
court ordered early on, but the lawyer at that time
didn't want to ask that or whatever.
With all this happening between the lawyer and the judge
and everyone that was involved, what was the next step.
What did they tell you?
At this point they're misdemeanors, and with the misdemeanors, they
just tell me they can't court order medication, and they
can't court order him because he needs to be in
the state hospital get stabilized. That's what I think. He
needs to be somewhere long term where we've got professionals
taking care of him. They just tell me, we can't
do that. At this point. He's a difficult placement. They
could place him in group home or there's a plate
there's another place that helps people with cognitive issues, but
with him being aggressive, he will cause problems there or
maybe even fleet. They don't know, so I don't know
that they're going to come up with the discharge plan
that is going to really help.
Now that you've been through this twenty twenty, hindsight is
always perfect. Looking back over the years you've been doing this,
do you see anything that stands out, something that could
have changed or was it just destined to turn out
the way it did for him?
I mean I can say, well, maybe I should have
done this at that time or that at that time.
I mean, I tried to get a Baker. You know,
you think the Baker Act is answer. It wasn't going
to be an answer if he continued to refuse his medication.
So already on this the medication is poison. It doesn't
help me. I'm not sick, I don't need it. Like
at this point, there was nothing I could do to
stop it.
It seems like for every solution offered, he raised another obstacle.
So I believe he did everything you possibly.
Could as much as I tried. I tried for months.
Like I said, I sat there with him. I literally
made a list, keep your clothes on, keep your music down,
stay in the house after such and such a I mean,
I'd come home and I go back to his house
the next day and of course it'd be crumpled up
in the trash. There was a point where of no return.
That was what initially I was trying, because you could
see it happening, and it was like, if only they
would keep them longer at the hospital, that's what would
have saved him, But that wasn't happening.
It sounds like you were doing your best to consider
every possibility. So I don't think second guessing yourself would
have made any difference at all. So looking ahead, what
do you see now, what do you think you have
to do, and what can help help him to get
a better stable life for his future.
Well, I sent the judge a letter explaining that his
illness and my fears are a he's going to hurt himself,
He's going to hurt somebody else, or somebody's going to
hurt him. He doesn't have any social skills at this
point to stay at the homeless shelter. He didn't have
that a year ago. He didn't have the ability the
social behaviors and regulation and what to do. It was
out the window. The best thing that can happen, and
it sounds horrible, is that he ends up back in
jail at least I know where he is and he's safe.
I mean, it certainly is an ideal, especially if he's
in isolation and I have no control over him, and
I have no control over the judge, the social workers,
the people in the jail. Whatever I have to say,
I can say all day long, but they do what
they do, right, So I don't want to be not hopeful.
There's always a miracle efect can happen. And I feel like,
regardless of the brain disease, we're all on a journey,
right We're all on a journey, our own journey, and
he's on his, and he's on this pathways and I
don't know why, and I will never know why whatever happens,
why this happened, And you know, it's his journey. It's
his journey, just like my journey. My journey is my journey,
and somebody can walk along with me. I can walk along.
I've been walking beside him, but I'm walking beside him,
maybe guiding him and supporting him. That's all I could do.
And once he decided he didn't want that anymore for
whatever reason, then he's basically on his own and to
whatever you know is going to happen. It's going to happen, right.
There's not much more you can say on that. So
what advice would you offer to others who might be
facing the same struggles you've been through? How would you
guide them toward finding even a small sense of peace
in their lives so they're not left carrying the weight
of self blame or trapped in that pain, because, as
you know, it's a very painful journey.
Right, Yes, number one, we didn't close it, right, We
as parents, friends, family, we didn't close it. We can't
cure it, and we can't control it. As we can
control is our response to it, and we have to
make a decision as family members or friends what we're
going to do. You know, how can I best help
this person if that's even available, If it's available to
help and have boundaries, And I think people really need
to know that it's okay to have boundaries. If your
loved one is violent, you don't have to It sounds awful,
but if they're being violent in your home, you don't
have to put up with that. Your life doesn't have
to be ruined because your loved one has a brain
disease that's affecting you I think that people knowing that
they're not alone, and that's of what you're doing, is
you're not alone. There's lots of us, friends and families
of relatives with seriously mentally ill people all over the world.
I'm sure we've all sacrificed a lot of time and
energy and worry and fear and the what ifs and
the shirt apps and the guilt. Right we feel guilty,
well maybe I should have said this, or shouldn't have
done that, or what have you, And in that it's
not productive. It's not productive. The best thing we can
do for our loved ones is to take care of ourselves.
It all comes down to we have to stay healthy.
If we go down health, we're depressed, and we're you know,
we're in a bad place. We're not helping that. So
the best thing we can do for the bottom line,
for ourselves is to take care of ourselves. It's okay
to have fun, you know, it's okay to have fun.
It's okay to enjoy your life. And we can't sacrifice
our life because this is happening or happening to somebody
we love. We can't sacrifice our life for them. And
that's the best thing we can do is to stay
healthy ourselves.
Absolutely, from a parent's perspective, it's all about wanting the
very best for their child. It can be incredibly hard
to even think about heading out to a party when
you know your son or daughter is struggling. That's a
deeply emotional thing for any parent to work through, and
it's completely understandable to feel that pull on your heart
like you just mentioned.
Yeah, definitely not saying it's easy, but I think we
have to realize that it's something we have to do
for ourselves. We just have to detach. So what is
it we detach with love?
You know, you're so right. Keeping our own peace of
mind is essential because if we don't, stress can creep
in and affect us in ways we might not even expect.
Absolutely, absolutely, Yeah, that's why the bottom line is we
have to take care. So if he turns around and
I don't know what happens, I want to be in
a good place. If we're to have a relationship, things
turn around, Things turn around on how differcent he's on it.
It's stable again, he needs assistance for whatever, apartment finding
or what have you. I want to be there for him,
but I also, you know, I want to be there
for him, but I need to be here for myself
and do those things that make me happy.
Now, absolutely, I think that's tremendously important. Well, this has
been great, great information, great conversation. I really appreciate you
taking the time to come on.
Thank you, Thank you for having me.
Oh it's been my pleasure. Thanks again. Thanks for taking
the time out of your busy schedule to listen to
our show today. We hope that you enjoyed it as
much as we enjoyed bringing it to you. If you
know anyone that would like to tell us their story,
send them to tonymantor dot com contact. Then they can
give us their information so one day they may be
a guest on our show. One more thing we ask
tell everyone everywhere about why not me? The world, the
conversations we're having, and the inspiration our guests give to
everyone everywhere that you are not alone in this world.
No