Personally speaking ...Insight from a Family Member



Written by: Faye Morton 

Today, I sit and reflect as I remember a meeting from 1983.
 
I was very surprised as Dr. Ruiz spoke to our little BAMI group meeting, on Mechanic Street, describing an example of his limitation as a doctor. (BAMI was the original name of Bluegrass Alliance on Mental Illness in Lexington, KY).
 
Dr. Ruiz: "The good looking, polite young man seated across the desk from me stated, he wanted to express his gratitude and say he was well and would not be needing further medication. He planned to get a job the next day and would stop by occasionally to say hi."
 
Dr. Ruiz remarked that the young man 'did' get a job the next day and 'did' stop by frequently, and he watched helplessly as his patient decompensated to the point of a mental health petition, (MHP) for commitment to Eastern State Hospital for treatment.
 
After the meeting I introduced myself to him and stated his patients story could be my son, Jim's, story. Dr. Ruiz did not comment.

Fast forward:

 Sunday April 29, 2012, after attending an Assisted Outpatient Treatment, (AOT) NAMI Family Workshop. 

For a year now, Jim has been receiving a required injection of a time-release medication. It has made an positive impact in spite the serious deterioration of his health after years of neglect. He now lives in an apartment and is visited 3 to 5 times each week by his case manager.
 
He attends NAMI social events, volunteers and enjoys time with his family. He is no longer trapped in his hellish hallucinations, too fearful to eat or be among those who loved him.
 
But just when you think everything is going great, you often get a big reminder of long term struggle that is mental illness. 
 
On the drive home Jim shared the plan he is working on at this time. These were his thoughts:

• convince his case manager to help him move out of the ghetto apartment he lives in  
 
• get rid of his case manager (non-threatening)
• stop going to the Toy Counseling Center 
• call one of the lawyers on TV and to have his Social Security Benefits (Payee Program) put back into his name!

Today, the Bluegrass Mobile Outreach Program has provided peace to Jim and I.  While, Jim is working on a plan that will bring the life of hell back into our lives. For you see, even with medication Jim still lacks insight of his illness ... this is called anosognosia (AH-no-sog-NO-sia). It is the main reason people who live with schizophrenia and bipolar disorder do not take their essential medications.
                                                                   
I invite you to join me, to advocate to change the mental health laws in Kentucky, so others like my son can be assured of a safe and meaningful life.

Click here: to view Faye's Story written in 2010
This is the 'ultimate story' of one mother’s struggle to get her son help. Read how an agreed outpatient order made a huge difference in her son's life.
 

Spring ...

By: GG Burns

Spring in Kentucky brings many things ... warmer temperatures, tree's flourishing their colorful blooms, designer hats and of course ... the Derby. Baby horses gallop around green pastures, birds chatter in the morning midst and flowers explode with fragrant aromas. Spring is also the time for people to celebrate with graduations, weddings and family gatherings.

Each spring, the mailman delivers invitations from friends and family from far and wide of graduations, weddings or other events. I hold these pieces of paper in my hand and shed tears of the missed opportunities to see my only son experience graduations or milestones common for his age.

Each year since 2006, 'spring' has brought horrid memories of extreme pain and heartache to my husband and I, as this was the year we lost our son to a horrible disease called bipolar disorder. Even though he was diagnosed with various labels at a young age, with treatment and supports he had become accomplished in music, electronics and aviation. He was often called a gifted genius and medical professionals assured us he would be OK. By the time our son turned 16, he was excelling among his peers, working while still in high school and looking forward to a successful future.

Then one day he stopped! He stopped taking care of himself. He stopped taking his needed medications. He stopped understanding the rules and reality of the world around him. He stopped attending class and eventually lost his job. As he turned 18, instead of moving forward toward his dreams he descended into a delusional world known as a psychotic episode. This was around the time my son lost all insight that he had a serious brain disorder. His grandiose and often aggressive behavior was so mind-boggling ... how could he not know? 

It was years before I would learn he had a condition called anosognosia. Anosognosia is a neurological syndrome that produces an impaired awareness of one's illness. It is caused by damage to specific parts of the brain, especially the right hemisphere. It is also the number one reason some people with mental illness do not accept treatment. They simply do not understand they are ill or that their reality isn't the same as the world around them.

Family members of individuals like my son live in a never ending state of grief and terror. We try to go on with our lives, but losing a family member to mental illness is worse than death! (Especially when we know that medication could help restore their health and sanity.) In death, a person grieves for their loss forever, but is able to move on knowing their loved one has passed to a better place. In our case, we watch our son become sicker each passing year. Our grieving never ends. Our son is simply trapped in a war zone in his mind, believing he is someone he is not.

"In Kentucky, people have the right to 'not' accept treatment," even though they suffer with a cruel brain disease that doesn't allow them to understand their condition. "Kentucky law doesn't allow anyone—even an individual's family—to intervene." Not until his illness worsens and he reaches the point of 'danger' to himself and others. In many cases, this could be too late for individuals like my son!

One out of 4 American adults live with a diagnosable, treatable mental health condition. Treatment works, recovery is the expectation, but our state and federal laws must change for those 40% who lack insight to access it!

"Spring in Kentucky could be the beginning for my son to regain his life ... if he could access treatment."

The Screams for Freedom

A story described by Barney McNeill, a Western Kentucky man
Written by: Alexis C. Custard

    Stuck! Like a car caught in the mud with the prodigious tires rotating. The cycle repeats itself and there is no way out. The battery in a car is used to start the car. All of the car's electrical accessories depend on the battery. The car's fuel pump, fuel injection system and ignition system all run off the car's electrical system, but when the system goes out the car, like the brain- it cannot function. A Western Kentucky man, Barney McNeill had a 17-year beautiful marriage, he said. His wife began to have difficulty sleeping at that time did not sleep for three days. McNeill and his wife were keeping her mother, who also suffers from mental illness, for about a year at the time. Suddenly, his wife told him to get out of the house and that she didn’t want him anymore, McNeill said. He consulted a doctor concerning his wife’s symptoms that said he would help; however, when his wife went to see the doctor he saw nothing wrong with her. There was nothing that could be done and McNeill did not want to push the issue, he said.

    We live in a world where we are allotted so much freedom, but what happens when the person is unaware that they are ill? It then seems that people are taking away their freedoms by not allowing them to live happy, healthy lives. McNeill tried to get a mental inquest warrant in his attempts to have her evaluated. His hopes were that his process would allow his wife to receive the medical attention that she needed. A warrant was served, but when she was taken to the office for help, she showed no symptoms by that time; therefore they were still stuck in the same place where they began.

   “I felt helpless when this happened, as no one wanted to help me with my wife,” McNeill said.

    Today, McNeill and his wife are divorced because nothing or no one could help her. Some individuals with mental illness like McNeill’s ex-wife don’t always show symptoms. Individuals who show symptoms can get help, but what about those who are screaming out for help, but no one comes to their rescue? The current laws state that an individual can be forced to get help, but only if they are a threat to themselves or others. McNeill’s ex-wife did not display any of those symptoms to the public, and as an adult she was able to refuse treatment.

    There are no laws to help those who are unaware that they are mentally ill. McNeill’s ex wife’s life does not have the quality of life that she could have because she has not received the treatment that she deserves. She has no one around to help her. Eventually her life will spiral further out of control, like her symptoms the longer she goes without help.

   “More law changes and more money need to be made available to treat mental illness, which is more rampant than most people think,” McNeill said.

   A person cannot help their condition or know when their system will stop functioning like it use to. We must keep pushing the car stuck in the mud in order to change the laws and help those that cannot help themselves. Push to fight for the screams for freedom.