Frequently Asked Questions


What is Advocacy?

Advocacy is the act of interceding on behalf of an individual.  In this situation, we are advocating for our mentally ill relative, always keeping in mind their goals and wishes when we are requesting appropriate treatment and care for them in the mental health treatment system.

back to top


How do I talk with my family about my concerns?

Advocacy often begins at home in speaking with your family about your concerns for a family member.  Families have learned to cope with mental illness in unique ways.  Many of us have had our own individual experiences of various episodes of the illness. As we look back we often identify those events as “Red Flags” that our loved one was in trouble, but we were afraid to talk within the family.  We don’t know about other’s experiences and are too embarrassed or too afraid to speak first.  When you begin advocating for a relative, you must often begin with the family to gather each incident or story of the ill relative to create a context for the illness.  Context derives from the Latin word “contextus” meaning a joining together.  When we have a context for a subject or event, it means we see it in terms of the whole situation including background or relevant environmental influences.

back to top

What is a “Red Flag” experience?

I’ll never forget the first time I had a “Red Flag” experience. I had come home from university to work for the summer and I drove out to see my brother in his rented apartment.  When I knocked, there was no answer so I opened the door to find him sitting on the couch, holding a beer, talking to the wall in fragmented language.  He had worked all day as a carpenter and he was tired.  His eyes were glazed and he looked exhausted.  When I came in, he gathered himself together and acted as though what I had witnessed had never happened.  Instinctively, I knew that I could not question him about this episode.  Right then and there, it became a taboo subject between us.

back to top


Am I “tattling” or “ratting out” on my family member?

Episodes with family members are difficult to talk about because we don’t have a context for the mental illness or the event.  They appear to us to be random events and are sometimes easily explained away.   When I left my brother’s apartment following that “Red Flag” experience and went home to my parent’s house for dinner, I was concerned but I didn’t have the language skills to communicate about it, I didn’t have a context for the event.  And I felt that if I simply related the story, my parents would think that he had been drinking too much.  I didn’t want to be a “rat”.  I knew that it wasn’t the alcohol, it was different.  It would be almost twenty years before my brother would be correctly diagnosed.

back to top


How will the family react?

Your family, like ours, may have reacted historically in a protective or reactive way to the red flags of the illness.  We did not have all the facts, our open communication may have broken down.  Our relationships within the family may have suffered.  Parents hesitate to discuss their concerns openly because they don’t want to label their child.  Siblings feel torn and confused.  They are often more familiar with the episodes of the disease but they hesitate to talk about this taboo subject.  Tragically if the parent is the ill person, the children often become “parentified”, that is, they take on certain parenting responsibilities and lose their experience of a happy and carefree childhood.  For the spouse, the illness can create a devastating loss of their expectation of a healthy partner in a marriage and the realization that they may have to take on the burden of caretaking.  We need assistance to create support for treatment.

 “Troubled Journey” by Diane Marsh, PH.D and Rex Dickens is a good reference.

back to top


How do you get your family to help?

You ask them to share their personal knowledge about the illness.  The respectful information that your relatives submit to you about the episodes of mental illness they experienced with your ill relative becomes the basis of the Historical Chronology. 

Writing and compiling an accurate, factual history of the episodes of mental illness is the single most important task that you will do as an advocate. 

The Historical Chronology will become an indispensable tool because it becomes a living documentation of the illness.  The professionals that you will encounter are usually meeting you and your relative for the first time.  The Historical Chronology gives them an accurate picture of the illness and illustrates for them how it is affecting your relative and the family.  Putting together this document is a serious undertaking and when you present it, the piece gives you credibility as an advocate.  This is especially important if your ill relative is uncooperative or unable to communicate accurately.

In the Advocacy Works workshops some participants describe these feelings as they begin the task of writing:  Bitter, frustrated, remorseful, angry regarding a lack of information, technically overwhelmed, shocked, hopeless, and sad.

Others experience their emotions when they begin to write as:  Hopeful, functional, focused, more open, accepting, and thankful.

Advocates experience many emotions…don’t give up!  We must remember that improved treatment and care for our ill relative will be the clear result of writing this history, combined with clear communication with the professionals we meet in this work. 

back to top


What do I do first?

Two tasks should be undertaken immediately.  The first is to complete a “Client Profile” for your relative.  Download the three-page format and simply fill in the blanks.  The next time you and/or your relative visit a mental health professional, take this document with you.  It will give you credibility as an advocate for your relative and it will supply much needed information to the professional who is currently working with you.

The second task is just as important.  It is called creating a “Crisis Plan” and it should contain all of the names, addresses, and phone numbers of the professionals and service agencies that you rely on in an emergency including the police.  Sadly, it is usually up to the family to handle a crisis.  We must arm ourselves with the best information possible so that our relative can be taken care of in the most professional manner with the least distress.  The police are often the first responders to a crisis emergency.  Sad but true, it is up to us as caregivers to become familiar with the police in our community and to communicate with them.

back to top


How do we create a context for the disease and support for treatment so we can obtain a correct diagnosis?

To create a context where there is none requires writing and compiling a history of the illness - the writing of a “Historical Chronology”. The Historical Chronology is a history of the mental illness written by experts who know and care about the individual - You, the family. This Historical Chronology will be your primary document for advocacy.  Before the actual gathering of information and writing commences, the family will benefit if they can sit down together with a family oriented mental health professional.  When the family communicates, the following occurs,

  1. Reliable information is exchanged about the brain disorder.
  2. The family feels acknowledged and validated regarding their experience.
  3. The family gains knowledge about the brain disorder.
  4. The client receives support.
  5. The Mental Health Professional learns what has and what has not worked.
  6. The family and ill relative are empowered to support each other.
  7. Family members who have been affected by the illness are referred.

When the family engages in this process, a context for the disease is created and unified support for the treatment and care is agreed upon for the patient.  When a Historical Chronology is presented, a well informed diagnosis can be made by the healthcare professional.

back to top


How do we communicate with our ill relative?

In a word, respectfully.  Today, for many reasons the mental health, correctional, and psychiatric hospital systems, where our relatives are involved, offer numerous challenges to the ill person and their advocate.  We must have a relationship built on trust and mutual respect with our ill family member.  They must believe that we will always represent their wishes and best interests when they are unable to do it themselves.

Episodes of illness AND periods of clarity appear with people who have serious brain disorder.  These periods of clarity, which I refer to as “Windows of Opportunity,” offer us a chance to communicate with our relative during illness.  These “Windows” are recognized by every family I have talked to.  (more

“When the patient is in an acute phase and too ill to focus, we must plan for him, but always connecting with him when he is well enough to say what he really wants.”

“Welcome Silence” by Carol North M.D. 

back to top


How do I begin?

Start with a meeting with your family.  Enlist the help of a qualified professional.  Ask your family to contribute accurate information about the illness.  Write a Historical Chronology.  Sit down with your relative, if possible, and complete the Client Profile format.  Go to Downloadable Forms.  The three-page Client Profile provides identifying information, healthcare history, and a positive picture of the patient’s skills and accomplishments.  You will be providing the professional with up-to-date facts that will help them understand the ill person. 

back to top


How do I create balance in my own life as I embark on the business of advocacy?

It is easy to become consumed or obsessed by the plight of your family member.  Taking care of yourself is your most important task and will allow you to give freely to others.  Remember that there are others in your life whose role will be to support you in this work…allow them to do so.  Spend time every day connecting with others so you know you are not alone.  Spend time doing things you love.  Get lots of exercise and move around.  Ask for mentoring when you need it and pass it on. 

back to top

Home | Contact Us | © Advocacy Works 2007