(7-11-16 Every week, I receive emails from parents seeking help. Most have an adult child who has been arrested because of an alleged criminal act clearly related to a mental illness. Sharon Giaccio has been keeping a detailed account, adapted here, of her family’s ongoing struggle to help her adult daughter. Sadly, this still unfolding story is all too familiar to many of us.)
DAUGHTER’S MENTAL ILLNESS “HI-JACKED” HER LIFE
My daughter is in jail today.
Mental illness stole her from us. It also caused her to lose herself.
We never imagined this could happen when she left for Catholic University in Washington D.C. I remember exactly when it began. On March 3, 2010, we were called by a Student Health psychologist at the school where she was a third year student.
The caller was blunt: “Your daughter is catatonic and needs to be hospitalized.”
We learned that two days earlier, our daughter had gone with friends to Penn State for the school’s St. Patty’s weekend celebration and had gotten into an argument with a police officer after a liquor store clerk refused to sell her alcohol even though she had just turned 21 years-old. When she returned to her school that Sunday night, she was incoherent. Her roommates got her to the student health center.
After the psychologist called, we took her to the Kennedy Health Crisis Center in Cherry Hill not far from where we live. The two of us sat for several hours in the emergency room’s waiting area. Finally, we were taken into an examination room where she was told to shed her clothing and don a hospital gown. It was cold and she was shivering with no blanket or sheet. I stayed with her, trying to keep her calm. Because she had begun acting strange after attending a Penn State party, blood tests were done. There were no drugs or alcohol in her system that would explain her confused behavior.
As we waited to be seen by a doctor, she began keening. (wailing in grief.)
“Mom, I want to go home. Pleeeeeease, I want to go hoooome.”
I had heard and read that word “keening” many times but never truly knew what it meant until that night.
Finally, after piling my coat and sweater on her to keep her warm, I asked a nurse what was happening. I was told there were no beds in the hospital psych ward or crisis screening and we could expect to wait as long as 24 hours or more for admission. We’d not seen a doctor.
They were shocked when I told them that we were leaving. I couldn’t bear to see my daughter in such pain and I wanted her to be evaluated by a psychiatrist. I was told that we couldn’t go. They said she might be a suicide risk and they didn’t want the liability. I wanted her treated and didn’t want to wait a day for her to see a doctor. They eventually relented and allowed me to sign her out.
When we got home, I began calling psychiatric treatment centers. Because of how we’d been treated at the emergency room, my daughter was reluctant to go but we convinced her to check herself in at Hampton Behavioral Health Center at Westhampton, New Jersey, which had an open bed. It was two weeks after her twenty first birthday. We had celebrated then with candles and a cake. Now she was being admitted into a coed adult psychiatric ward. I felt frightened and worried. She was so young and fragile. Most of the patients were much older. What was happening to her and to us? The thought of her developing a mental illness had never entered our minds.
A week later, she entered a partial hospitalization program in Princeton. She seemed better when that program ended six weeks later. I was surprised when she was discharged because there was no referral for ongoing treatment. No nurse navigator, no recommendations, no offer of help in locating a psychiatrist. We began making calls to psychiatrists who were recommended by friends. The answers ranged from, ‘Sorry, we are not taking new patients” to “we don’t take your insurance” to no return calls when we left messages. One of the offices that was not taking patients suggested we call the University of Pennsylvania Bipolar Clinic in Philadelphia so we made an appointment.
During her initial break, my daughter had been diagnosed with “psychosis un-determined cause.” Now she was being diagnosed with bipolar disorder. That was what the psychiatrist seeing her said but we were told that she would need to see a therapist too because the psychiatrists’ main function was issuing medications. We found a therapist in Woodbury who told us that she wasn’t convinced our daughter had bipolar disorder, which the therapist described as “the flavor of the month.” For the next several months, we received different diagnoses. We learned that there was no x-ray, no bloodwork, no test that clearly shows what exactly was wrong with our daughter.
She was put on Abilify and seemed to be doing well. She enrolled in a local university and found a summer job as a waitress at the Jersey Shore. She didn’t really click with her therapist so she stopped going. All of us began feeling confident that whatever “it” was, she had overcome it and now was fine.
In November, 2010, possibly due to the stress of exams and end of semester deadlines, she had a recurrence of psychosis. Once again we had difficulty finding a psychiatrist who would accept new patients. When we finally did find one willing to see her, we were told that he was not in our insurance system. Our insurance said it would pay only 50% of what it considered to be “reasonable and customary” out of network care. The maximum reimbursement was $72 per visit — even though the cost of seeing this psychiatrist worked out to be $10 per minute! Under this formula,the 50% was of $72 so reimbursement was $36 sometimes on a $900 bill. We had to pay the rest.
This doctor began trying different medications because he decided our daughter was suffering from major depressive disorder, not bipolar disorder. As he spent more time with her, he added that she seemed to have general anxiety disorder, social phobia and panic disorder. With each new diagnosis came more medications: Lexapro, Adderall, Lovaza, Xanax, Seroquel and Klonopin. When our daughter began describing racing thoughts, paranoia, and anxiety in her sessions, the diagnosis began to shift back to bipolar. At one point she was on nine different medications, which concerned me.
My husband and I worried constantly as we watched her cycle through periods of relative stability followed by extreme episodes. We would have promising moments. She completed her college degree, found a job and moved out of our house into an apartment. Then the mental illness would rise up. She would become paranoid and believe her co-workers were talking about her and bosses were spying on her. She would be fired or quit. Her personal life suffered too. She would become involved with a boyfriend only to have them end their relationship once her bizarre behavior became too much for anyone except her family to handle.
Our daughter began to self-medicate, primarily with alcohol and her manic episodes became longer and came closer together. On Sept. 11, 2014, she was in an auto accident. She had five broken ribs, a concussion and deflated lung. A different psychiatrist took her off Lexapro and put her on yet another medication, Trileptal. A judge ordered her to enter an alcohol treatment program. For five weeks, she attended 4 days a week (Intensive Outpatient Program.) The therapist told the court that our daughter did not successfully complete the program. The therapist recommended that she be enrolled in MICA (Mental Illness with Co-Occurring Addiction) but that didn’t happen.
She had been living on her own, but she returned home and in December 2014, she had a major break and ended up at the Inspira Health Network emergency room where it was determined that she was not a danger to herself or others even though she was having paranoid delusions and had mentioned a desire to harm herself. She was sent in a taxi to a homeless shelter where she called us.
During the next eighteen months, our daughter had 11 crisis screenings, 9 Emergency Room visits, 2 Involuntary Hospitalizations and was treated by two additional psychiatrists. But she was never treated long enough for her to become truly stable. I was frustrated because some medical facilities refused to allow me to make appointments for her citing HIPAA even though I explained that my daughter, due to her mental health, was unable to make phone calls and deal with the frustration of being put on hold, busy signals and scheduling challenges.
Our daughter stopped taking medication and her symptoms became worse. Her psychotic episodes became more frequent. She called the police for help several times because “they” were monitoring her, trying to kill her, messing with her or to report that someone was in the house.
On June 15, she was taken to the Kennedy University Health Systems emergency room by ambulance during an episode, but was considered not to be a danger to herself or others even though she was so manic that when she arrived there she had to be restrained and sedated with Haldol. She was released the next morning.
Three days later, she was involuntarily admitted to a local hospital after a violent altercation at home. We took a video to document the damage she had done in her bedroom during a frenzy. While she was in the hospital, we tried to convince her to go into a treatment program for mental illness and alcohol abuse, but she refused and again was released. She began drinking heavily that afternoon.
Not long after that, she totaled her car and we refused to help her get another. We also told her that she couldn’t live with us unless she stopped drinking. At one point, we drew up a written contract for her to sign that warned her that she would be evicted if she didn’t follow the rules and seek treatment for her mental illness and alcohol abuse.
Within weeks, she was drinking heavily again so we told her to leave. Instead, she sat in front of our house smoking and then refused to pack her back and go. We offered to pay for any in house treatment program that she would be willing to enter. She refused and we were told there was nothing we could do because she was an adult.
She moved into a boyfriend’s house but soon was so psychotic and drunk that he called the police and they took her to an emergency room where she was judged not a danger to herself and put into a taxi even though she was manic. Her boyfriend kicked her out when she showed up, threw her belongings outside and when my husband and I returned home from an outing, we found her inside our house with a brand new car that she had leased by a dealer who clearly took advantage of her.
We became prisoners in our own home because she refused to leave. My husband and I would come home from work, lock ourselves in our bedroom and awake in the morning to find our front door open and her delusional and paranoid but convinced that she didn’t need help. When we asked for help, we were told to hire an attorney and have her evicted. She was a prisoner just like us but to her own drinking and self-destructive behavior.
In June, 2016, while en route to visit her brother at the Jersey shore, she was issued two reckless driving citations and one speeding ticket. She was still living in our house and on the date of her first court appearance, she got dressed, stepped outside, got in and out of her car eight times, walked around it and did not leave the driveway. When I asked if I could take her to court, she refused. This lead to her first failure to appear summons. The next day she missed another court date and another warrant was issued.
On June 16, she arrived psychotic at her brother’s condominium. He asked her to leave and she refused. The police arrived and arrested her because of outstanding court warrants. She fought with officers and was charged with aggravated assault. She was taken to an emergency room and treated for a burn on her leg that she had allowed to become infected. She was then taken to local holding cell. The next morning she was released and was re-arrested within an hour for being a disorderly person. It was obvious that she was psychotic but there was nothing anyone could do, it seemed, or was willing to do except arrest her. Once again, she was released and was wandering the streets in a confused state. This time the police took her to the emergency room. She was involuntarily committed to a short term psychiatric unit. After five days, she was released. We did not know she was being released. We were HIPAA-ed again.
Within 24 hours, she was involved in an incident with the State Police. She later told us that she was confused while driving and stopped to figure out where she was. She was stopped on the Garden State Parkway, possibly obstructing traffic. When the officer approached her, she became frightened. We have been unable to learn what happened next. We do know that the officer discharged his weapon, firing at her car. She was arrested near Atlantic City and we were told her bail has been set at $150,000. The case is still being investigated but we have been told that she will face numerous felony charges.
When I finally was able to visit her last Sunday, she was subdued, her hair was dirty, and she told me that she blames her family for what has happened to her.
We tried to do everything we possibly could to help our daughter. Mental illness high-jacked her life. We also believe the mental health care system failed her because we could never get her into treatment long enough to get her fully stable. We never could get her into a co-occurring program that would deal with her mental illness and her addictions. Our attempts to help her were stymied by HIPAA.
This is our daughter and we love her but we do not know what else we can do to help her and we are frustrated and angry that the criminal justice system is now dealing with a mental health issue.
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