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Table
of Contents:
Page
1:
HARDEST EXPERIENCE OF YOUR LIFE
REALITY ABOUT WHAT THE MENTAL HEALTH SYSTEM CAN DO
WHAT CAN YOU GET FROM THE SYSTEM?
GET ENTITLEMENTS FOR YOUR LOVED ONES
Page
2:
HOW CAN YOU ACCESS THE SYSTEM?
HOW TO SUCCEED WITH MENTAL HEALTH PROFESSIONALS
EDUCATE YOURSELF
Page
3:
DEMYSTIFYING MEDICATION
YOUR LOVED ONE DOESN'T TAKE THE MEDICATION
NEGATIVE AND POSITIVE SYMPTOMS
DISCHARGE PLANNING
Page
4
HOW TO
SUCCEED WITH YOUR MENTALLY ILL LOVED ONE
PROTECTIONS
AND OPPORTUNITIES FOR YOUR LOVED ONE
LOOK AFTER
YOURSELF AND YOUR FAMILY
HOW
TO SUCCEED WITH YOUR MENTALLY ILL LOVED ONE.
Develop a long-range view of the illness. It can take
a long time for your loved one to recognize and accept his/her
illness, as it can for you. Direct them into activities within
their reach. In the meantime sustain patience and hope.
Be
consistent. It's important. Have a simple structured environment.
Reduce stress and stimuli; stick to predicable routines.
Slow
down and quiet down. This is difficult for "high-gear"
people, but a voice that is slow-paced and low-toned, and
uses short sentences, reduce confusion. Learn the pattern
of early warning signs and help prevent relapse. A relapse
caught in the early phases can be prevented. Learn the signals
that it is impending and how to subvert it
Accentuate
the positive. Your loved one is particularly sensitive
to comments that attack her/his self-esteem, so avoid critical
comments.
Help
your loved one deal with stress and behaviors. Calling
"time out" if your loved one becomes stressed and using leverage
(penalties and consequences) to provide limits on issues such
as poor hygiene, arguing and assaultive behavior (focus on
one at a time) help your loved one's controls.
Include your loved one in ways that are not too stimulating.
After not using medication, the greatest barrier to recovery
is lack of involvement with family and community. Promote
a sense of belonging, being useful and cared about, until
your loved one is able to re-establish contacts.
Understand
how they feel when they are in psychosis and about this state
they are in. They are terrified by their feelings of loss
of control over their thoughts and feelings. Some voices they
hear are menacing. Accept that they are in an altered reality
state. Stay calm if they act out what the voices tell them.
Remember you can't reason with psychoses. Avoid direct, continuous
eye contact or touching the person. Express understanding
for what they are feeling; the voices are very real to them.
Don't
expect too much too fast. When people are recovering from
an acute psychotic episode, they need to approach life at
their own pace. Don't push too hard. At the same time, don't
be too overprotective. Do things with them rather than for
them, so they can regain their sense of self-confidence.
Tend
to your life. Get back to normal routines after the initial
crisis subsides.
PROTECTIONS
AND OPPORTUNITIES FOR YOUR LOVED ONE.
Whatever supports and resources exist for you also exist for
your loved one. NAMI offers an experiential learning program
called Peer-to-Peer and a peer-based support group called
NAMI CARE for those in recovery. City Voices sponsors peer-based
groups in most of the five boroughs. These peer-to-peer groups
are called Awakenings. This is the time for the whole family
to subscribe to City Voices. Contact Dan Frey (212 982-5233)
for news, first-person stories and provocative and informative
columns. Mental Health News (contact: Ira H. Minot, 914 235-9385)
is winning serious attention for its in-depth and readable
reportage on pressing issues in mental health.
Of
course NAMI national and affiliates and state publications
keep you abreast of the activities of this largest grass roots
organization for families and consumers. There are web links
for both of you: mentalhelp.net is a good first stop for information
on medications and illnesses; narsad.org, for the latest in
research and updates on medications; alsofa.com, bilingual
and user friendly basic information on illnesses, and mdsg.org
for full information on a range of affective disorders. Don't
forget the website of your national organization, NAMI's nami.org
and to do a search for the websites of various state affiliates,
for example the affiliate for Syracuse (www.nami-promise.org)
on its "e-help" page has excellent tips and strategies.
As
strong as the family movement is the newer "consumer" (most
recent term for those suffering from mental illness) empowerment
movement. The influential New York Association of Psychiatric
Rehabilitation Services (NYAPRS) has conferences and establishes
policy to serve the cause of mental health recovery and rehabilitation
through advocacy and program initiatives (518 436-0008). The
National Mental Health Consumers' Self-Help Clearinghouse
is a consumer-run national technical Assistance center (mhselfhelp.org).
Many discussion boards are available, for instance through
the National Mental Health Association (www.nmha.org
) and Alice Cohen has started the friendshipnetwork org.
It's
heartening to know that as your loved stabilizes, that institutions
are in place for him or her to find strong representation
and that their voice can make an impact on the mental health
agenda in this country.
Be
aware of how your loved one is protected by law. The Americans
with Disabilities Act helps protect workers with mental illness
from employment discrimination, and under the Human Rights
Law, mental illness cannot be used as a reason to discriminate
against an individual who is or wants to rent or buy property.
Should your loved one be arrested, the Urban Justice Center's
Mental Health Project's handbook, When a person with mental
illness is arrested: How to Help guides family members to
obtain appropriate psychiatric care while in jail and to work
with the defense attorney to advocate for the disposition
of the case that will lead to treatment rather than incarceration:
contact: Heather Barr, Urban Justice Center, hbarr@urbanjustice.org
or (646) 602-5671.
LOOK
AFTER YOURSELF AND YOUR FAMILY; WHAT YOU'LL BE GOING THROUGH.
Families go through a series of reactions to the diagnosis
of mental illness
1.
Shock and denial (resistance, rationalization and assigning
blame).
2. Grief and shame (sense of loss for hopes and self-blame
which is unwarranted and counter-productive).
3. Anger (represents the first glimmer of acceptance but can
be directed against the mentally ill relative and the delivery
system).
4. Partial acceptance (search for an instant cure and revolving
door of professionals).
5. Radical acceptance (understanding the limits of treatment
and recovery, focusing on helping themselves, their family
and other families). This is exactly the same process any
of us go through with the diagnosis of a chronic medical illness.
According
to a recent Surgeon General's report, one out of five suffer
from mental illness in any given year. Find strength in the
fact that because of medical research medications for persons
with mental illness have made major strides in the last decade.
Medications are more effective with fewer side effects and
promise to advance more in the next decade. Because of NAMI
and TARA, there has never been more support and less blame
for families. Increasingly, stigma against mental illness
is being brought to public attention, with the awareness that
schizophrenia, bipolar and personality disorder are treatable
a neurobiological brain disorders. More individuals suffering
from mental illness have "come out" and been able to establish
exemplary and productive lives.
Consumers
and Families for Psychoeducation
345 East 57th St.
New York, NY. 10022-2952
212/317-0716
FAX 212/317-0627
jdthcrrngtn@aol.com
Please send them your comments.
Judith
Carrington, Director
James Reiser, Co-Director, Board, National Alliance for the
Mentally Ill (NAMI-NYC METRO)
Igor Galynker, M.D. ,Ph.D; Attending Psychiatrist, Beth Israel
Elaine M. Hopson; Dir., Psychiatric Day Treatment, Mount Sinai
Ife Ayodele, Psy.D, Mental Health Outpatient Clinic, Metropolitan
Hospital
Patty Sacher; "Family to Family", National Alliance for the
Mentally Ill
Shlrlee Cohen, MS. MPH, CCRN, Adult Nurse Practitioner/Clinical
Educator, Mount Sinai
Danny Frey, Editor-in-Chief, New York City Voices
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