How to Live with a Mentally Ill Person:
A Handbook of Day-to-Day Strategies
By: Christine Adamec
INTRODUCTION
I know the pain, guilt, fear, and many other emotions that accompany being
a caregiver to a mentally ill person, and I can truly empathize with my
readers. In fact, one thing that had stuck in my mind since my adolescent
daughter's first hospitalization, when she was age twelve, was a nurse saying
to me, "Since you're a writer, maybe someday you can make some sense
of all this and help others."
What a ridiculous statement that seemed to me at the time. I have never
known such emotional pain as I felt then. It was literally the worst thing
that had ever happened to me. Even though it wasn't directly happening to
me, I was affected by Jane's illness, as were her father and her two brothers.
I experienced the shame and the guilt, wondering and agonizing over what
I could have done to make this child so sick. Wouldn't I know what it was,
if it was that bad?
And now, five years later, I have come full circle and realize that I didn't
do anything bad, nor did anyone else within my family or outside of it.
Most mental illness is directly related to a brain dysfunction, not a dysfunctional
family. That means the problem is not external-it is internal to the ill
person.
How to Live with a Mentally Ill Person is for the many families who love
their relatives and do their utmost to provide loving and good care-often
at great emotional and financial cost to themselves.
One of the worst problems caregivers face is the overall stigma surrounding
mental illness. This stigma causes caregivers, ashamed and alone, to hide
their problems and suffer in silence. The emergence of such groups as the
National Alliance for the Mentally Ill (NAMI) and its state member groups,
as well as the increasing successes of pharmacological treatment, have eased
this pain. Yet, sadly, the discriminatory mindset is still prevalent, and
caregivers are still blamed by mental health professionals, the public,
and themselves for a problem over which they have little control and did
not cause.
If you are ashamed and despondent over your relative's condition and if
you really don't know how to cope with such common problems as refusal to
take medication, paranoid behavior, and other behaviors, how can you be
an effective caregiver? The answer is that you can't. I want you to educate
yourself and to be effective, and I want you to demand the utmost from your
relative's physicians and other mental health professionals. This book is
not only a discussion of the problem of providing care to a mentally ill
person-with suggestions on how to resolve these problems-but it is also
a rallying cry to stand up and assert your rights with the professionals
who continue to blame and/or ignore you as you seek help for your relative.
The good news is that although families don't cause the problem, many families
can help improve the situation, with information and understanding. There
is information that caregivers need about common feelings and practical
coping strategies. This is what I want to share with you. This is what I
lacked when I needed it. I am writing the book that would have helped me
when the crisis of mental illness engulfed my daughter and, through her,
my family.
My goal in writing How to Live with a Mentally Ill Person is to provide
you with practical information, tips, and strategies for optimizing your
relationship with the ill person. Of course, I can't give you the magic
answers that will make your relative well or even necessarily compliant.
How I wish I could! But there is no one game plan or series of tactics that
will work in every situation. However, what you can do, as you read through
this book, is learn what others have felt and how others have managed. It
is my hope that some of their strategies and tactics in effectively living
with a mentally ill person will also work for you.
My research for this book included interviews with social workers, psychiatrists,
and other mental health professionals. I also interviewed family caregivers,
some of whom have resolved most of the problems of dealing with daily living
with a mentally ill person and some of whom are still struggling to cope.
My research also included searching databases on CompuServe and America
Online, large computerized online services through which I found sources
in medical, psychiatric, and popular literature. Special interest groups
and libraries also provided valuable information; for example, I found the
library files in the NAMI section of America Online very useful.
There are several "givers" in this book, underlying premises that
I wish to explain up front. First, I believe that major mental illnesses,
with few exceptions (such as the extremely rare multiple personality disorder),
are biologically based diseases. Something in the brain goes awry and causes
the person to experience the neurobiological illness, whether the disease
is schizophrenia, depression, or some other serious psychiatric ailment.
I am not a psychiatrist, psychologist, or mental health professional, but
I believe the expert researchers in this field who state unequivocally that
mental illnesses are biologically based. Those people who don't think there
is enough proof to support the neurobiological basis for mental illness
bemuse me. They have essentially no proof that families or other people
cause individuals to become mentally ill. Their old theories are based on
more old theories and teachings that existed and proliferated before we
knew much about the brain.
But I do want to stress that How to Live with a Mentally Ill Person is not
a book that will teach you about the inner workings of the brain or why
things may go wrong with it. Nor will I tell you how to "cure"
such illnesses. In many cases, the mental illness you are contendingwith
in your relative is a chronic problem with peaks and valleys. Medications
may improve the condition but they will not cure the illness. Keep in mind
that medications may improve symptoms or even the overall condition of the
person. But remove the medication and the problem will recur.
I start from the premise that mental illness is biologically based and believe
that families need plenty of help in adjusting to their ill relative's problems
and coping with day-to-day life. As a result, my book deals with the family's
response to the ill person and tactics and strategies to improve daily life
with that person. For those who find that living with a mentally ill person
is simply too much, I discuss letting go and finding a new place for your
relative.
ATTRIBUTION
Each person who has been quoted by name in this book has signed a release
authorizing the use of his or her name. In many cases, individuals did
wish to be interviewed but did not want their identities revealed. Generally,
this was because they were family caregivers providing very personal information
about themselves and their family members, including how they felt about
the circumstances they faced.
HOW THIS BOOK CAN HELP YOU
If you think you are the only person who has ever despaired of caring
for a mentally ill person; the only person who has ever felt unable to
bear another minute; the only person who has ever wondered why this terribly
unfair thing has happened to you-this book is for you While this book
can't make the problem go away, it can provide advice from the experts-people
who have faced this problem and the psychiatrists and others who truly
empathize and offer practical advice to make it easier for you.
I want families to be empowered to use the knowledge that we have attained
to date. Whether you have a child with manic depression or a spouse with
major depression or a parent with Alzheimer's, I believe you share a common
bond. This problem happened not only to the ill person, but to you. And
you are not alone.
Millions of Americans suffer from disabling mental illnesses unrelated
to alcohol and drug abuse, according to information provided by the National
Institute of Mental Health. Most have living parents, many have brothers
and sisters, and some are married. At least three to four million live
with their families.
Although you might be willing to talk to your friends and relatives about
a broad array of health problems, mental illness is often a subject you
don't discuss. It's embarrassing, it's confusing, and it hurts too much,
especially at first. We need to work on changing that.
How do you cope with caring for your ill relative, meeting your own needs,
and dealing with a public that sees mentally ill people as fearsome or
bad? This book includes suggestions and strategies for
day-to-day living with a mentally ill person, as well as managing a life
of your own and dealing with a biased population.
Not that we can change the world as well as ourselves in a week or a year
or even in our lifetimes. But we can take steps, day by day. That is what
I want you to do. Keep taking steps forward, even if they are "baby"
steps. I believe the secret of success in virtually any venture, including
difficult life circumstances, is to set goals and move toward them, even
when it seems as if you are crawling. Every movement forward is an advance.
And if you feel that you are "falling back," pick yourself up
and move forward again. Do it for your ill relative and do it for yourself.
As I wrote this book, describing problems caregivers face and solutions
and tactics, I kept saying to myself, "Be practical." As a result,
whenever possible, I not only suggest what you might try but also how
to try it. My overarching goal is to enable you to identify goals for
yourself and your relative and to offer you ideas on how to move toward
the goals that are right for you. I want to reduce despair and hopelessness
and empower you as much as possible. Then when you are energized and empowered,
you can spread the word to others.
HOW TO USE THIS BOOK
How to Live with a Mentally Ill Person is divided into chapters and separated
into three major parts. The first part of the book covers how you and
your family are initially affected by the mental illness of your relative
and how you learn to accept it. The second part discusses problems and
practical aspects of coping with living with your mentally ill relative.
The third part covers working with the "systems"-the psychiatric
hospital system, the educational system, and the insurance system (including
Medicaid, Social Security disability, and Medicare). To a limited extent,
I discuss the criminal justice and substance abuse systems, although that
could be a book in itself-as could any of these other topics. Finally,
in the Appendixes, I have included helpful books, organizations, and resources.
I recommend that you read this entire book. Each chapter contains information
that may be of use to you in your current situation.
For example, information on coping with an elderly relative with dementia
may include strategies that could be transferable for another caregiver
who has a child with schizophrenia or a brother suffering from major depression.
It is also true that some strategies that might work well with one individual
would fail miserably with someone else. For example, gently touching or
even bear-hugging a depressed person might work well, but a paranoid person
might shrink back in terror. You need to tailor what you try with the
person to his or her illness, the situation, and the individual's personality.
And sometimes, no matter how hard you try, no matter what you do, nothing
seems to work. You might lose your temper and yell at the person or you
might start crying and then worry what effect this will have on the mentally
ill individual. It's important to remember that everyone "loses it"
once in a while. Maybe this means you need some time off or maybe you
need some rest. You also need information on how caregiving for a mentally
ill person may affect you. This book will give you that information.
There are many books that discuss the diagnosis, treatment, and problems
of various mental illnesses, as well as possible causes. This book is
different. I will not attempt to tell you why mental illness occurs, although
I do believe that there is a biological basis. Whether these illnesses
are genetic, prenatally determined, or caused by some mysterious virus
is well beyond the scope of my knowledge and abilities. So you won't read
anything about "neuroreceptors" or other confusing medical terms
here.
My goal is to talk about the difficulties that you as a caregiver face
in living day to day with a mentally ill person. Knowing that many others
have faced these problems is, in itself, heartening, because so many caregivers
feel so terribly alone. I believe that knowledge is power and it's good
to shed light on the everyday realities of living with a mentally ill
person and how to make the experience more positive. I hope that you will
find some useful and practical information and that it will help you to
know that you are being guided by someone who has been there.
What is mental illness? For the purposes of this book, mental illness
includes such serious and debilitating ailments as schizophrenia, manic
depression (also known as bipolar disorder), major depression, panic disorder,
schizoaffective disorder, anxiety attacks, obsessive-compulsive disorder
and other debilitating neurobiological disorders, as well as combinations
of them. These are generally severe long-term illnesses, often amenable
to some form of treatment but not curable. Also, in some cases, such problems
as attention deficit disorder can be very disabling to the individual
and to the family, particularly when combined with other psychiatric problems.
I include information for caregivers of people who have Alzheimer's or
dementia because they face many of the same problems as caregivers to
much younger mentally ill people.
If you're a caregiver to an adult or child with cancer, heart disease,
leukemia, or other serious illnesses, many people consider you a hero.
But if your relative is mentally ill, you are a suspect. And yet families
are the mainstay for the majority of mentally ill people of all ages today.
These caregivers need much more support and advice than they have received
in the past from the mental health community.
How much do you owe your mentally ill child, spouse, sibling, adult child,
or other relative? How much can you give? And if you completely sacrifice
yourself to the care of the mentally ill person, do you understand that
you may also be sacrificing the mentally healthy members of your family?
These are tough questions with no "right" answers, but they
are questions that families need to ask themselves and somehow resolve
with a practical and hopeful plan, not by falling into an unconscious
pattern of behavior. It is important to consider whether providing primary
caregiving for the person is really in the mentally ill person's best
interest.
I hope this book will help you resolve these issues in your life.
Christine Adamec
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Early
Schizophrenia Screening Test 