When mental illness enters the family | Dr. Lloyd Sederer | TEDxAlbany

December 29, 2019

Translator: Katarina Ericson
Reviewer: Denise RQ Thank you for joining me. We’re here together because we share
a common interest and concern, and that’s helping a loved one
with a mental illness get the kind of care that’s going to
make a difference in their life, and that of their family. I’m talking about a family member
like John, who was 16 when he started
falling behind in school. He stopped seeing his friends,
he quit soccer where he’d been a star, he started spending countless hours
in his room, refusing to come out. His parents could smell marijuana, and they could hear him
in the middle of the night, yelling, at God knows what. I’m talking about
a family member like Irene, a married mother of two teenage girls,
who started missing work, despite always having been
a reliable and hard worker. Her family was concerned,
they were concerned about her, they were concerned about the income
with her husband out on disability, and they were concerned
that she’d lose her job. But she had trouble concentrating, even the littlest things
were really difficult for her, and she frequently said: “I can’t do this, I feel hopeless,
I don’t know if I can go on.” I’m talking about a man
like Roberto, who is 69 and has longstanding problems
with high blood pressure and diabetes, and had a heart attack
a few years earlier. But for him, it was his depression that got in the way of his taking care
of his medical problems and put him at at greater risk for the
progression of those physical problems, and potentially, for another heart attack. Families sense it, they sensed deep down
that there’s something going on, there may be a mental illness
and they wonder, “What are the road signs?” ‘What are the hallmarks
of mental illness?’ There are two; there’s symptoms and time. The symptoms of a mental illness
array in three ways: there are problems with mood, problems with thinking
and problems with behavior. A person’s mood may become down, they may be tearful, cry,
and they feel hopeless, they may be irritable, or angry. The thinking changes. They may have trouble putting
one thought after another, their thoughts are jumbled or racy, they may start to become suspicious,
even frankly paranoid. Their ideas may not make any sense. They can also have trouble
with their behavior, their behavior becomes
noticeably different, there may be dramatic changes
in their sleep, and their eating patterns,
they may stay up all night. They may eat very little,
they may behave in odd ways, isolate themselves, be suspicious, or even at times get so paranoid
that they’re talking to themselves. These are the symptoms of mental illness; mood symptoms, thinking problems,
behavior problems, and the second hallmark
is that they persist. It’s not a matter
of their lasting a few days, they go on for weeks and months, and they need to for someone
to actually be considered ill, and they don’t get better on their own. There’s one more thing, another hallmark
which families have to be mindful of, and that’s safety. Is there a time where the family
becomes concerned that a person’s life, that they’re a risk to themselves,
to someone else, that’s a hallmark of mental illness
that needs to rise to the top. And even when it seems so obvious, many families may have
a hard time trusting what they see. They may never
have experienced this before, or the implications may be
just too difficult to bear, which is why I urge families
to write down what they see, what they observe, not what they feel,
what they observe. Things like, “Spent the weekend in bed,”
“Misses school every day,” “Is late for work,” “Picks at his food,” “His clothes droop off of him.” Write these down, and then think: “Who else is observing
the same thing I am?” Because that’s another person
you can turn to and say: “Here’s what I’m seeing,
are you seeing the same thing?” Because that’s a way to validate,
to gain confidence, that what you’re seeing
is indeed going on. And that’s going to be important
when it comes time to speaking with your loved one
about these problems, if they don’t bring it up themselves,
and many don’t. They may be ashamed,
they may not want to be a burden, or many times, the illness gets in the way
of their being able to recognize that they have these problems. So, who else can you turn to,
who else can validate? This is also going to come in handy
if you have a chance to go to a doctor’s appointment
with your loved one, because you’re going to be able
to bring information that you’re loved one
is not likely to provide. So, if indeed there’s
mental illness in your family, I want to offer four messages, four ways by which you can turn
these problems into solutions. First, don’t go it alone. Second, don’t get into fights. Third, learn how the mental health system works,
learn its rules, and how to bend them. And fourth, remember you’re on more
of a marathon than a sprint. Each of these in turn. First, don’t go it alone.
Don’t go it alone. There are people and places to turn to. With more than one
in five people in this country suffering from a mental illness
every year, that’s adults and teenagers, that means that there are
many others experiencing what your family is experiencing, or have. So think, who can you turn to? For many families it’s going to
be a doctor or a clergy person, someone who has known
their family, known their loved one. Every day, doctors, clergy,
have in their offices, families looking for help,
families in crisis. They’re one place to turn. Sometimes, other families have spoken out,
they’ve had a problem with depression, they’ve had a problem with addiction,
they’ve had a problem with trauma. They may be friends,
they may be relatives, they may be people you know at work, other families, or other places
and people to turn to. Sometimes a family’s been contacted
by a school counselor, that’s a good person to turn to. Many companies have what are called
employee assistance programs. These are confidential programs
that provide counseling, that provide information
about where to turn. I almost always urge families to go to,
and consult, NAMI. N-A-M-I, The National Alliance of Mental Illness. This is a volunteer organization
that’s been around for decades. Hundreds of thousands
of family members, nationwide, who’ve been through this themselves
and who’ve been trained, they’ve been trained
to provide information, referral, they do it on the phone,
they do it in person, many NAMI Chapters provide evening educational groups
called Family to Family. NAMI is a terrific resource,
and it’s free. The point is you need not go it alone, there are people and places to turn to. This has been learned
with every persistent illness, whether it’s heart disease, colitis,
diabetes, Parkinson’s, cancer, there’s no need to go it alone,
there are people and places to turn to. Second, don’t get into fights. This may be the hardest
prescription of all. Because you’ve tried reason,
you’ve tried persuasion, you’ve been patient
and it’s just not working. And you’re concerned;
you see your loved one getting sicker, you wonder what’s going to happen,
you know time’s not on your side. So what do we all do at that moment? We amplify our voices, we talk louder,
we start to push, we start to yell. But what does that do?
It invokes an equal and opposite reaction. It starts a fight, someone digs
in even more deeply. There are alternatives to fighting,
there’s listening and leverage. Listening. I believe that all behavior
serves a purpose. It just may be that we don’t understand
what that purpose is. For Irene, the mother I mentioned,
why is it that she’s avoiding work? She knows full well
that the family needs the money. She knows too she could lose her job. What is it that overrides that,
that has her stay home despite that? Listening, asking, that’s how we find out. John, the teenage boy,
who’s smoking marijuana. What’s that marijuana doing for him?
How is it serving him? It’s useful to him,
as is boarding himself up in the room? These are not good solutions, but they are the solutions
that someone has come up with so far. Listening is the way to get on the side
of somebody that you love, and see if there isn’t a way
to work out a better way, because goodness knows
these behaviors are not doing the job. But if listening isn’t enough,
then there’s leverage. I believe that in all families
it’s a two-way street. You give and you get,
and you get by giving. You get by giving. So I ask families: “What support are you providing
your family member?” Is it a place to stay, is it money,
is it a car, is it a telephone? Doesn’t matter. Whatever it is, those are
what you have to negotiate with, to say you get, and there’s something,
it’s a conditional getting. It’s about saying:
“Here’s what we provide, and in exchange we want you
to do something in your interest, something that’s going
to help you get better, like go to an appointment, take treatment,
do the hard work of recovery, take care of yourself.” It’s always in their interest,
that’s where the leverage is used, to help somebody do something
that’s going to make a difference to them. There are alternatives to fighting, the listening and leverage
is not the same thing as being disengaged, in fact it’s being
more engaged, in a harder way but in a more effective way
than getting into a fight. Don’t get into a fight. Third, learn how
the mental health system works, learn its rules and how to bend them. The mental health system
in this country sadly is way too broken. Families are going to discover this
sooner than later, and that means families will have
to learn to be vocal advocates for their loved ones and for themselves. They’re going to need to learn
what the rules are and how to bend them. I’ve seen families
with a kid off in college, and the kid stops going to classes, has a serious medical problem
or a disciplinary action, and they don’t hear anything
from the school. I’ve seen many families with a loved one
getting sicker and sicker, deteriorating, isolating,
using drugs, stockpiling pills, maybe even harboring a weapon. And the family tries
to reach out to the caregivers, they try to call the doctor,
they try to call the clinic, and what do they hear? “Sorry, I can’t talk to you
without permission.” That’s the Federal Privacy Law,
this HIPA, it’s called HIPA, H-I-P-A, it’s a HIPA mantra
that clinicians are taught. That’s a rule that you need to know
because it’s a rule you need to bend. You need to get a clinician
on the phone and say: “Wait! Don’t hang up on me.” “I know you may not be able
to give me information, but there’s no prohibition
against you listening, and you need to know
what’s going on at home, you need to know
what’s going to make a difference with your patient, or a family member.” This is not fair,
this is certainly not fun, but being a vocal advocate
has become a necessary part of healthcare, in medical care in general,
and in mental healthcare in particular. Fourth, remember that you’re on more
of a marathon than a sprint. Few illnesses, physical or mental,
come and go in a matter of weeks, most persist. And there are problems along the way. There are problems getting an appointment,
there are delays in appointments, there are questions
about the quality of treatment. Is it good enough?
Is it working? Is it sufficient? And then a loved one may stop
going to appointments, or stop doing the hard work of recovering. Recovery is not a straight line. People improve
and then there are setbacks, which test the morale and determination
of everybody involved. Everybody means the patient,
the family, even the clinicians. Which is why another way
of saying this is, never give up. Never, ever, give up. Even experienced clinicians
are not good at predicting when someone’s going to turn the corner,
when they’re going to start to get better. We know it happens,
we see it all the time, we just don’t know when. So never giving up
is a way to stay the course, because people do recover,
people do make lives with illness, lives that are gratifying to them,
but it means staying the course, it means never giving up, you’re on more
of a marathon than a sprint. So my four messages to families
where mental illness has entered, are: don’t go it alone, don’t get into fights, learn how the mental health system works,
learn its rules and how to bend them, and fourth, remember, don’t give up, you’re on more
of a marathon than a sprint. Recovery is possible,
people do make lives with illness, lives with work, with relationships, with contributional lives
that they can take pride in. There are many people like this,
they may just not step forward. They may be concerned about stigma,
they may doubt their own gains, or they may just want
to put the past behind them. Many people recover,
but they’re not visible, people do get better,
but it takes good treatment, hard work, support, support, support. It requires the tincture of time, and it means keeping hope alive. Thank you. (Applause)

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