The Three of Us
My mom and dad were high school sweethearts. Married at the young age of 21, they lived in a tiny studio, eating off my dad’s amplifier that doubled as their dining room table, owning not much more than a salt shaker and broom. Although poor, they had each other, and that was enough.
A few years later, I came into the world, making our little family complete. With a $1.50 in my parent’s bank account, a new baby was the last thing they could afford; but their love for me was all that I needed to have a rich childhood. Being poor brought our family closer. I was blessed to have two loving parents who loved each other and loved me more than anything. I thought nothing could destroy the three of us. Until the day my mom fell sick.
The Early Signs
I had gone off to college in California and gotten a job in LA. I was leaving the office when I received a call from my mom. We usually chatted on the phone every day, but this call was different. She was sobbing uncontrollably. I immediately started crying as well. Mom proceeded to tell me something was wrong with my dad. She believed he was having an affair. Unbeknownst to me at the time, this was the start of my mother’s schizophrenia.
None of this made any sense to me. My father would never do anything that would hurt my mom, nor would my mom lie about my dad. My mother’s suspicions about my father grew. Calls from her became increasingly weird and absurd. Soon my mom was accusing my dad of having multiple wives, secret bank accounts, and other children around the world. Later she would tell me my dad was gay and cheating on her with celebrities; and even weirder yet, with his own sister.
We at first thought it was a marriage issue. But mom and dad met with multiple counselors to no avail. Tensions between them worsened as my mom’s accusations grew. Soon her paranoia extended to strangers, the neighbors, and eventually all friends and family, convinced that everyone was part of a large conspiracy. Her behavior continued to get even more bizarre. She ran away from home and went missing for a few days, provoked strangers so they physically assaulted her, and confronted police men when they visited our home due to noise complaints. This was not a marriage problem. My mom needed help.
Unfortunately my mom did not agree. She was not sick. Everyone around her was. What added to the difficulty was that my mother was adopted. We had no family medical history to check for any clues that would explain this sudden change in behavior. Maybe it was early Alzheimer’s? Dementia? We at one time even wondered if it was an extreme case of menopause.
Answers finally came three years later; the first of what would be many times that my mom was arrested. After countless visits to our home, the police decided to place my mom on a psychiatric hold and admit her to the hospital for evaluation. After a few days of observation, the doctors concluded that my mother was suffering from late on-set schizophrenia.
Now my father and I finally knew what we were up against. From that day on, we researched and read everything we could about the disease, its symptoms, causes, and treatments. We read books and science journals, joined online communities and networks. But most of what we found was advice for caregivers on how to “cope” with their loved ones’ illness. We wanted to know how to get them healed.
For seven years we looked for solutions, only to be met with countless dead ends. There was nothing anyone could do since my mom refused treatment. We just had to wait and hope that one day she would agree. But as we waited, my mom’s mental and physical health declined. Day-by-day she became more hostile, her thoughts non-sequential and her delusions more perverse. She locked herself in the apartment for months, getting up at 4am in the morning to yell obscenities out the window including death threats to family members and friends. She would yell all day as if in a trance, forgetting to eat, shower, even turn off the stove, stopping only when she would get tired late at night or whenever her voice got too hoarse. My sweet and beautiful mother now sat alone in a dark apartment, pale and riddled with self-inflicted bruises, talking to herself, cursing the world and everyone in it. The disease was killing her and there was nothing I could do but watch.
But as hard as it was as her daughter to witness this, it was ten times more difficult for my dad. As my mother’s primary caregiver, my father endured years of verbal, mental and physical abuse as the disease had caused my mom to turn against him and blame him for everything that had happened. My mother who loved my father more than life itself, now spat in his face and told him every day that she wished he were dead. From the moment he woke up to the moment he went to sleep, he was yelled at, cursed and accused.
But what made it more difficult was that my dad still loved my mom. Despite the abuse and her hatred towards him, he knew it was only the symptoms of her illness and not her real self. Good intentioned people told him to leave my mom and save himself. But to his vows he stood true. “In sickness and in health” he often reminded me. Long after many would have given up; he kept fighting to save his wife.
With no answers to look towards, my father slipped into a deep state of depression. He began to believe that his life had more value if he were dead. By some miracle he hung on, enduring one day at a time as he continued to care for my mom. But I feared for the lives of both of my parents if something didn’t happen soon.
The law states that a person can receive treatment against their will if that person is a threat to themselves or a threat to others. The fact that both my parents were slowly dying seemed like reason enough to make a case. However, the system thought otherwise, almost requiring a tragedy to occur before any help could be provided.
We wrote to the Attorney General’s office and other state officials asking for them to intervene. We pleaded with physicians and case workers for their help and support. We called the police numerous times when things got out of hand. But responses ranged from the familiar “sorry there’s nothing we can do” to lectures on how my dad just needed to take better care of my mom.
The Breaking Point
During the summer of 2014, the situation reached a critical stage. After so many failed attempts to get my mom help, my father had reached his breaking point and decided his life had come to a useful end. Thankfully he was surrounded by good people who saved him before it was too late. But that was my breaking point too.
That same day I quit my job and jumped on a plane back home. I had no plan, no return ticket, just fear for my family and anger at the events that had brought us to this point. How could the system be so broken that it could allow innocent lives to be destructed? There had to be someone out there who knew some way to help, we just desperately needed to find them.
The Founding of Anosognosia Caregiver Alliance
For the next few months I spent every day online, reading, researching and scouring the web for any kind of resource that could point us in some kind of direction. Eventually I stumbled upon the Treatment Advocacy Center website, and on it, the term “anosognosia”. For the first time I felt like I had finally found an explanation for my mother’s resistance to treatment and the resulting struggles that it posed for my father and I. But while we finally had a word to describe our situation, information on treatment options was still hard to find.
As we did more research and met with experts in the field, we started to document our findings for other families that may be in a similar situation. More and more we learned about other caregivers who experienced real tragedies (loss of a loved one) as a result of not being able to get the help that they needed in time. We were saddened and angered to hear stories like this and wanted to help as many families like ours as possible. No life should be lost to this terrible disease. From that day, the Anosognosia Caregiver Alliance was founded. But little did we know that the first family our website would help would be our own.
The Dream Team
After months of research, we started to understand both our legal and medical options. The first step that we decided to take was to apply for legal guardianship of my mother. This provided the ability to actually have a conversation with a doctor about her medical history and care; something we couldn’t even do at the time. But to accomplish this we would need the help of an attorney and psychiatrist; a team that would help us appeal before a judge why my mother needed a guardian and why this would be the best option for her health.
Almost immediately we were referred to a wonderful lawyer who was known in the state of Hawaii to handle guardianship cases. But we still needed a doctor to evaluate my mom. This posed the biggest issue given my mother’s refusal to leave the house, let alone see a doctor (the whole reason why we were applying for guardianship in the first place).
Logically we thought that if my mom wouldn’t go to the doctor, maybe the doctor could go to my mom. But finding a physician who would make house calls was more difficult than anticipated. We offered compensation for transportation and any other costs incurred. However, this didn’t seem comfortable or normative for current medical practices. Again we had reached another dead end.
Exhausted, frustrated, and alone, I was ready to give up all hope. Just when I began accepting the fact that I needed to prepare for the worst, I received an email that would change our lives forever.
A well-known psychiatrist in Hawaii, Dr. Chad Koyanagi, had heard about our situation and visited our website. After reading our story he became determined to help us and wrote to me stating “I want to do whatever I can to help your mother”. These words brought us to tears. After years of searching, we had finally found help.
The Treatment Plan
Dr. Koyanagi was and is a godsend. Known as a pioneer in patient advocacy and treatment, he consistently goes above and beyond to help his patients as well as their families. Through his passion, compassion and dedication, he gladly made house calls on multiple occasions, took the time to accompany us to court to ensure the judge would approve our guardianship case, constantly provided support and encouragement for my father and I, and most importantly, worked with us to develop a treatment plan for my mom.
Given my mom’s condition, the best treatment for her was to receive a monthly injection of a medication called Invega Sustenna. This is an anti-psychotic proven to help schizophrenics control their symptoms enabling them to live more normal lives. The hope was that the drug would restore the damage done by the Anosognosia and allow my mother to regain some consciousness so she could understand her illness and agree to continued treatment on her own. The challenge was figuring out a way to administer those first few doses so the medicine could take effect.
We determined that the best way was for my mom to be admitted to the hospital under Dr. Koyanagi’s care. Unfortunately the only way to make that happen was through the police. This was a process we were very familiar with but reluctant to use. It required my dad to call 911, have the police come to our home, witness my mother during a psychotic episode, place her under a process called Mental Health Evaluation 1, and then admit her to the hospital. Although we knew it was in my mom’s best interest, it is never easy to see your loved one dragged off in handcuffs. But this time we knew we had a physician’s care waiting. With Dr. Koyanagi on our side, this was hopefully the last time we would have to make that call.
The Last Hospital Stay
Once admitted, my mother was hostile and aggressive, refusing to speak to us, and continuing to refuse treatment of any kind. Even though my father and I were granted legal guardianship, we still did not have the authority to administer medication against my mother’s will. All we could do was try to keep her safe in the hospital until she would eventually allow us to help her with her health. But as the days wore on, we had to prepare for the possibility that she would continue to refuse treatment, forcing the hospital to release her and start the process of calling 911 all over again.
Fatigued and fearing yet another dead end, we started to look into our last remaining option, Assisted Community Treatment (or ACT). A very successful program in other states, ACT allowed the severely mentally ill to continue to live in society (vs. be committed to an institution) as long as they adhered to a treatment plan. In this case, the court would have the authority to require my mother to receive treatment until she could regain consciousness and be able to continue on her own.
We were referred to another wonderful lawyer who specialized in this new policy that had been passed in Hawaii earlier that year. As we prepared to go to court yet again, Dr. Koyanagi made one last attempt to get my mom to comply. Taking a page out of the ACT book, he explained to my mom that he would discharge her from the hospital if she agreed to receive one dose of the Invega Sustenna and continue treatment with him at home as an outpatient. Although she had refused help from other doctors in the past – miraculously – this time – she took it. After ten years, my mother had finally agreed to treatment.
That first month after my mom’s release from the hospital was nothing short of a miracle. We were extremely worried that as soon as she got home her hostility would return and she would disregard any agreement she had made. But contrary to our fears, she immediately showed signs of improvement. Her self-talking stopped. Her anger subsided. Day-by-day she emerged a little farther from the fog, even returning to normal household activities like cooking and grocery shopping. Although they might seem like small achievements, for us they were huge. Someone who just a few weeks ago would do nothing but yell at the wall in the dark all day, was now cooking my dad a meal. I remember breaking down in tears the first time I saw my mom give my dad a hug. The Invega Sustenna was working. My mother was returning to us.
But the more my mom regained consciousness, the more we realized she had no memory of the past 10 years. Her brain had tried to protect her from the trauma the schizophrenia had caused and blocked her from remembering all the events that had led us to this point. Imagine being in a coma and waking up one day only to realize you lost a whole decade and now have a serious illness that will require treatment for the rest of your life. That is what it was like for my mom. Understandably, it led to depression, confusion, guilt and grief.
This brought us to a new phase of my mother’s journey. Side effects accompanied her new awakening with extreme emotions and high-levels of anxiety. Thankfully she agreed to see a therapist who would help her understand and come to terms with her disease and the new life that she would have to accept. Although it was extremely hard at first, my mom started to talk to us openly about her condition. She began asking questions, described how she was feeling and tried to understand how her brain worked. She even reached out to friends she hadn’t spoken to in years and explained to them about her illness and why she had been out of touch for so long. My mom’s anosognosia was finally gone. Not only did she have enough self-realization to understand her own condition, but she was able to start sharing her story with others.
The Journey Ahead
Today we are still working with my mom to help her manage her illness and slowly take steps to find her new place in society. Every day she amazes me by her courage and strength as my dad continues to amaze me with his patience and love for my mom. Although the road ahead is still long and unpredictable, at least we are facing it together.
People often ask me what got my mom to finally agree to treatment, and to this day I honestly don’t know. We suspect she might have confused our guardianship hearing for assisted community treatment and perhaps thought the hospital had the authority to order her treatment. But whether or not how much of that is true, I do know that my mom’s recovery can be attributed to both an answer to prayers and the tireless efforts of our legal team, Dr. Koyanagi and my dad. Their refusal to give up on my mom proved that even the toughest of cases can be helped if surrounded by the right resources: a compassionate lawyer, a devoted and persistent doctor, and a loving caregiver. I believe if others suffering from anosognosia were able to find their own dream team, then they too would have a fighting chance at getting their life back.
Not one day goes by that I am not eternally grateful for everyone who went out of their way to help my family. We want to be worthy enough of this gift that we’ve been given, and feel the best way we can do that is to try and help as many families and caregivers that we can. We hope that no more lives will be lost to mental illness and believe in the day that all lost loved ones be found and returned home again.
From our family to yours,
Mom & Dad get married
Mom stops working and early symptoms of paranoia begin
from college in L.A.
Mom runs away from home and is reported as a missing person
Mom stops using the phone and computer afraid someone is monitoring her
Mom is assaulted after provoking a stranger
Mom and Dad start marriage counseling
Dad works with Derek Nakamoto to produce his song for Mom (Carlita's Theme)
Mom stops going to the doctor and dentist
First petition to the Attorney General asking for help
First arrest under MH1 and admittance to Queens Hospital where Mom is diagnosed with schizophrenia
Outpatient follow-up visit and Mom's refusal to continue treatment
Appeal to the Attorney General continuing to ask for help
Spring - Winter
Police visit my parent's apt multiple times due to 911 calls and noise complaints
Second arrest and admittance to Queens where Mom is administered her first dose of Invega Sustenna
Invega Sustenna begins to take effect and Mom shows initial signs of improvement
Mom refuses to attend follow-up appointment, the medication loses effect and her symptoms return
Petition for legal guardianship is submitted
First home visit with Dr. Koyanagi
Court hearing and legal guardianship granted by judge
Fourth arrest and admittance to Castle Hospital under Dr. Koyanagi's care
Mom agrees to continued outpatient treatment and is released from the hospital
First outpatient home visit with Dr. Koyanagi to continue Invega Sustenna
First family gathering in years and chance to reunite with friends and family
Mom starts one-on-one therapy sessions
So much to be thankful for during this Thanksgiving
First happy holidays as a family in years
Anosognosia Caregiver Alliance is founded
Malia quits job and moves back home
Third arrest and admittance to Castle Hospital
OURS IS A LOVE STORY.