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My Mom Needs Assisted Outpatient Treatment (AOT)

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Six years ago, I could never have predicted how much my mother, brother and I could lose.

by Jennay  

Six years ago, I could never have predicted how much my mother, brother and I could lose. My mother went from being a full-time working person and Fulbright alumna to barely functional. Her paranoia is such that it implicates her friends, extended family, my brother and me as operatives in a conspiracy within her troubled, untreated, mind.

My brother and I thought, logically, that if sheghowrwal-family did not want treatment but was clearly so very ill and impaired, there must be some way we could get her court-ordered treatment. Upon further research, we learned that involuntary commitment to treatment would require our mother to be dangerous which, both fortunately and unfortunately she was not at that time.

Our situation appeared increasingly hopeless, and our home environment began to deteriorate. I withdrew from commitments with friends and, during the overlap of the onset of my mother’s illness and my enrollment in school, my grades suffered. My brother felt unable to pursue an engagement with the woman of his choice due to our mother’s fervent objections and paranoid outbursts on the subject. In addition to ranting to us about the young woman’s family’s alignment with her persecutors, our mother drove to their home and told them so herself. She later threatened that she would kill my brother and this woman if they were to marry.

A Turning Point

That period marked a turning point for my brother and me. We petitioned the court to hospitalize our mother against her will because she had made specific threats to harm other people. But, as the judge explained to me with regret and sympathy, because she had made these threats conditionally and was not wielding a weapon and lunging at anyone, she did not meet the legal standard for involuntary commitment. We were shocked and dismayed.

A few months later, I went for my weekly visit to my mother’s home to find that she was gone, though her purse, phone and car were still at home and the door unlocked. After working with police for nearly a week, we had no idea whether we would ever find her. Eventually she reappeared but, to this day, we do not know where she was or how she survived. The detective we had worked with suggested we contact Montgomery County’s Crisis Intervention Team (CIT). We called them and described our situation. The team member I spoke with said they could go to our home to evaluate her on our request but that the same standards applied for involuntary hospitalization. My brother and I feared it would do more harm than good to invite a crisis team to evaluate our mother if it had no ability to provide her with care. She would trust us even less. So, we let things stay the way they were.

It felt like no matter what, we would always come back to that same barrier of the legal standard. On one hand, we saw that our mother was gradually becoming sicker. Besides running off, she began to have more frequent and dramatic eruptions. We saw this could mean she was closer to reaching that standard for involuntary commitment. On the other hand, it was painful to see how upset our mother was and to imagine what it must be like for her to have no faith in anyone, including her own children. We worried for her safety in the event that she did reach a breaking point when we were not there to help her. Moreover, I worried that she would target my brother. 

the call to 9-1-1

One day in late March of 2011, my mother finally did meet that legal standard for commitment. Following an argument with my brother and me about haircut money, Mom lit and threw a match onto the kitchen floor as we were heading home for the night, yelling that if she didn’t have any control over her life, she wouldn’t let “them” continue to. I stepped on the match immediately. My brother and I were shaken. We could not, in sound conscience, leave her alone after that. I dialed 9-1-1 and reported the incident to the police, noting that my mother was mentally ill and I felt she needed to go to the hospital. Two officers spoke with her and felt convinced that she was dangerous enough to meet the legal criteria for involuntary hospitalization and treatment.  

My mother’s hospitalization was a step in the right direction but far from the answer to our problems. For one, ascertaining her whereabouts when she was transferred to another hospital in Baltimore was a challenge due to HIPAA laws, which are meant to protect patient privacy but seemed so useless in the case of someone who had no understanding that she was ill. We had to play another game of strategy to speak with her doctors and caseworker at the hospital. Every actual person we encountered did what he or she could to help us within the law, but those limits were strict. I learned that my mother’s diagnosis was paranoid schizophrenia and about the medications the doctors tried to administer to her. They had deftly presented the medications to her in such a way that she did not refuse them, though she did negotiate the dosage down to a negligible amount and either feigned or really imagined she was suffering dire side effects (which medical exams did not substantiate).

As I have learned through independent research, a schizophrenia patient like my mother – a woman with a late onset and paranoid type – is likely to respond to medication. Sadly, we do not know because my mother never agreed to take a therapeutic dosage. On the date of her hearing for continued hospitalization, my mother’s doctors, my brother and I all testified that she needed to remain under their care. If the judge were to rule in agreement with us, a medical review board would have then heard her case to determine whether the hospital could require her to take medication. At the time of her hearing, my mother did not appear to pose a threat to herself or others, so she was released. We took her home with a prescription for Risperdal, an antipsychotic medication. She berated us briefly in the car before refusing to speak to us, and I have not seen that prescription since I watched the doctor hand it to my mother.

During her hospitalization, my brother and I were participating in family support groups through our local National Alliance on Mental Illness (NAMI) affiliates. Upon hearing how my brother and I continued to support our mother financially, several of my peers suggested I abandon what they saw as my fantasy that this could help her and that I instead let her hit rock bottom, possibly becoming homeless, so she might meet the standard for treatment. It is heartbreaking to think anyone would have to do such a thing to a loved one. As I consider how terrified I would be if my 61-year-old mother were living on the streets or in a car, I remember that those families and many others have had to take that risk. Some have seen the result that their loved one becomes a victim or perpetrator of violence or so physically fragile that they become susceptible to further illness.

Our family’s experience with schizophrenia is the product not only of the medical symptoms of the condition but the failure of policy to recognize our unique situation. Through my education about the nature of schizophrenia, I have learned that my mother’s lack of insight regarding her illness is the result of a neurological syndrome called anosognosia. Estimates show that 40-50% of patients with schizophrenia or bipolar disorder have some degree of anosognosia. While this is a small percentage of the general population, it means that at least thousands of people in the U.S. may never be able to seek treatment for themselves, even when services are available to them. As I hope you see through this story, even one person is worth saving.

our hope for aoT

My brother and I have faced persistent obstacles in our efforts to care for our very ill 61-year-old mother living with paranoid schizophrenia in Maryland. We wonder if she will ever have her life back. It is thus with both great pleasure and, frankly, surprise that I learned of Montgomery County’s consideration of an assisted outpatient treatment (AOT) pilot project that would help people who, like my mom, are too ill to know they need treatment and therefore refuse all voluntary services in the community – to their great detriment.

I know that Montgomery County’s government cares about its residents. I am a proud graduate of Richard Montgomery High School’s International Baccalaureate program, one of the finest in the world because of the dedication of local government to an excellent school system. After my mother’s diagnosis, my brother and I have been able to secure vital financial assistance for her through Montgomery County’s extensive social safety net, though we were only able to do so against our mother’s objections with documentation of her illness.

Even with shelter and food, our mother continues to suffer with her delusions and now isolates herself at home for fear that any vehicle she rides in will explode. This county is a leader in so many ways, and it is clear that its government aims to give its residents the best chance for a happy, healthy life. Assisted outpatient treatment would give that back to my mother, who has contributed so much to her community already and now needs its help. My brother and I live in hope that Montgomery County will implement this program without delay to serve a vulnerable and deserving population, perhaps even including my mom. Other jurisdictions around the country have seen strikingly positive results through AOT, and I am confident it would save lives in Maryland today and well into our future. 

To read another story of Individuals and Families SPEAKING, click the title link below.

 
 

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