Transcriber: 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)