Our story — mine and Pat’s — is now live and available to order on Amazon. An exciting day full of mixed emotions.
FEBRUARY 6, 2019
Yesterday morning, the boy, who had gone away for more than a week, returned. He looked rough, and was crying. I employed my usual coping mechanism. I shut down, failed to acknowledge him, and left for work. I was about a block away when I began thinking about how to avoid coming home, and hoping he would leave again. I’m not proud to share these thoughts. It’s been damn hard. I’m in a constant state of fear when he’s around, and the past five years have conditioned me this way.
Today, I’d been at work, for about an hour, when the flood of messages began. I wish I could tell you those messages were easy to read. They were not. It’s incredibly painful being this boy’s mom — for so many reasons.
This afternoon, I dug deep inside myself. I stuffed the bitter, angry mama who’s been grieving the loss of the son, she once knew, way too long. No matter how awful things have been, or how hard they may get in the future, this child is still my child. This evening, I persuaded him to get in the car with me. My heart told me to drive east. He kept asking, “Where are you going?” I didn’t know and he began to panic. The uncertainty was too much for him.
I turned left, and an impromptu shopping trip at a low-populated, outdoor shopping mall began. My son was surprised. I was too. It wasn’t planned. (It’s been more than a year since I’ve bought anything for him.) As we entered the Polo Ralph Lauren store, my son made a beeline to a clerk. They shook hands, and I realized he was a neighbor kid. There was another person there, too. A man. He began talking to my son like he knew him. I watched as they had a conversation. Soon, we had a bag with six polo shirts, four t-shirts, and a jacket. The man helped my son find all the best deals, and told me how to get an additional twenty-percent off.
At the register, the man told a story about giving a coat to someone at his church — a coat like the one my son was getting — and he began talking about C’s upcoming birthday. I had no idea who this man was, but it was clear he knew my son. My heart swelled. Turns out, my boy had been in the store several times looking at clothes, and talking about getting a job there. The man knew a side of my son that was full of light. After the clothing store, we headed to the Nike store to buy shoes. I only planned on buying one pair. We left with two. As we drove away from the mall, I told my son, “I love you, and I hope you’ll take good care of your new things.”
That shopping trip was worth every penny. I really needed to see my son from a different perspective. Oh, how I hope and pray, someday, more people will see him as having a golden light — the golden light the man, in the Polo store, saw in my boy.
POSTSCRIPT: As of today, RNP’s son has a new title — Retail Associate, Ralph Lauren.
This is the story of the loss of our beautiful Monica, age 26. She was a great artist and jewelry designer. She was generous, loving and caring. She passed away at the room and board that was her residence. Unfortunately, she suffered from ulcerative colitis, diagnosed at age 11. She also had depression issues and high anxiety. Monica spent way too many days, weeks, and months in and out of hospitals for physical and mental health issues.
Monica was living in an unlicensed room and board in Elk Grove, California. This room and board was supposed to be one of the better homes according to Heritage Oaks in Sacramento. Heritage Oaks had screened the person running it and the home. For the first four or five months, Pompae, the man running the home, was around. Monica was stable and well balanced from her medications. Pompae prepared meals for the six people living in the home. He supervised issues that came up among the residents.
Then Pompae decided he needed more income and took a job doing construction work. He’d make breakfast for everyone and go to work early in the morning. He instructed our daughter to make lunch for all of the people living in the home. Monica worried about the other people and became anxious if she wasn’t around to make the lunches. This was not her responsibility. Pompae didn’t pay her to do this. He gave her some extra kitchen privileges. My point is six people, who all had mental health issues, were left on their own all day long. Monica said sometimes they wouldn’t have dinner until 9 P.M.
The day before Monica passed away, I talked to her on the phone and she seemed to be doing okay. She was getting over a bad cold but was less stuffed up. She may have mixed up or taken too much of her prescription medications. We haven’t received the toxicology report yet. I think Pompae may have checked on her once during the night since her roommate was worried about her. He left for work at 6:30 A.M. When her roommate couldn’t wake Monica up at 9:30 A.M., she called Pompae and he told her to call 911. The paramedics arrived at 10 A.M. They worked on our daughter for an hour but couldn’t get her to breathe again. My husband and I received a call from the police department that afternoon. The worst call of our lives.
Pompae shouldn’t be running a room and board but, after talking to APS (Adult Protective Services), I’ve learned there is very little accountability and few regulations these room and boards need to follow. Many of them are just collecting rent.
This needs to change.
When I got home from the hospital, I went into the backyard, looked up at the clear blue sky and yelled, “God, you can go to Hell. You made it, you can live in it”.
Then I cried.
Years later I still cry. Nothing I had ever experienced before had prepared me for the diagnosis of schizophrenia. My beautiful, articulate, talented, intelligent, middle son, Bill, was sick. The person I had raised and knew so well was gone. How could this happen? What could I do about it? How could I make him better? How could I cope? Questions. Lots of questions, but no answers.
Before I go any further, let me tell you about myself, family, and my son Bill. I was a typical World War II baby, raised in a “Leave it to Beaver” home. As was typical of the times, my future life was decided by my parents. I went to UC Santa Barbara, majored in a very unpractical sociology course. When I met my future husband, it went without saying that we would get married, have kids and live happily ever after. Our first son, David, was born while we were still in college. We decided that my husband would go to law school and I would go to work as a department store manager to put him through. Life was beautiful and I was pregnant again.
Our daughter, Barbara, seemed to round out our family perfectly. Two months later, she was dead. Crib death – Sudden Infant Death Syndrome. That doesn’t happen on a “Leave it to Beaver” show. Real life had stepped in. We mourned our loss, hugged each other, grew closer, and decided to have another child. That child was Bill. He was special, planned and wanted. Five years later, our son, Dan, was born and we were a typical suburban family — dad working, mom at home with the kids, car pools, Little League, soccer and PTA. Very common, very normal, very usual.
Bill’s childhood was typical of other boys. He was his little league team’s all star pitcher. He excelled on the guitar playing everything from Bach to rock. For five years, he faithfully delivered the morning Sacramento Bee newspaper to 60 customers. At his junior high graduation, he walked away with every academic award except one. In high school, he taught himself computers and excelled academically. With his electric guitar strapped to his chest, he started a band and played several local nightclubs. Outgoing, dressed in zebra stripped spandex tights, with hair down to his navel, life was exciting, and he was ready to live it.
He spent his first year in college at UC San Diego. Grades came easily, but he couldn’t decide what direction he wanted to follow, so with our blessing, he took a year off and worked. For his first job performance evaluation, his supervisor noted he would not last long in his present position as he was too motivated, too talented, and would be easily bored. He recommended Bill for a fast track.
Then something changed…
Gradual at first, almost imperceptible, the kind of change that a mother notices or better still, feels, but can’t quite describe. I found myself saying, “Something’s wrong with Bill.” His behavior changed. He lost friends and became isolated. He gave up his girlfriend and started dating a woman in her forties. He’d come home and tell me he was having conversations with the devil, that it was evil, and that he didn’t like what the devil said. The devil was in his head and he couldn’t get rid of him, even when he tried. Shortly after, Bill started taking drugs. I learned later it was a very common thing for people with mental illness to do. He was self medicating. At this time, we didn’t know what was wrong. Then he had his second job performance evaluation and what a contrast. In six months, Bill was now forgetful and unreliable. He didn’t get along with his co-workers, was rude and argumentative to his supervisor. Could this be the same young man?
In June, Bill moved back home. He was totally withdrawn. He told us bizarre stories about voices. Since we assumed drugs were the problem, we insisted he enter a drug and alcohol program as a condition to moving back. He agreed. He continued to be quite spacey, distant, and not quite there. The drug tests came back negative but the symptoms were still there. We still didn’t know what was wrong. The counselors in the drug and alcohol program didn’t have a clue. The only job he was able to hold was his old paper route because it was familiar and he didn’t have to work with people. Several months later, he decided to return to college.
His dad drove Bill back to San Diego. When he left him, he said he felt he had deserted Bill in the middle of a jungle, unarmed, and unprotected. This young man who had been so self assured a year before was fearful, afraid to talk to anyone, and unable to cope with anything out of the ordinary. Yet, he was trying so hard to live a normal life.
Four days later, I received a phone call from Bill. He was suicidal, hadn’t slept in three days and was hallucinating. He was afraid to go to sleep fearing he would go into a coma and not be able to come out of it. I saw my neighbor outside, opened the window and yelled for her to call the police in La Jolla, my husband at work, and my son, Dave, in Los Angeles while I kept Bill on the phone for over two hours until help arrived. That evening I flew to San Diego and brought my son home and took him to the emergency room. He was checked into a psychiatric ward. The next day I heard “schizophrenia” for the first time.
That is when I yelled at God.
I want you to understand that major mental illness is a physical illness of the brain which affects one in every 100 people or one in four families. These families are normal, common, very much like your own family, like mine. But like many folks, we knew nothing about it.
Our family eventually learned that mental illness is not curable, but like other illnesses, it can be treated with medication if the person is lucky enough to get diagnosed and treatment. People can learn to live with mental illness and can improve. We learned that mental illness is not something a person purposefully chooses for themselves or something they or their family caused. Genetics may be a factor, but it’s not, as a neighbor of mine who was a nurse said to me; “Oh, that’s caused by bad parenting”. “No. ” I remember replying to her, ”It is a physical illness affecting young people in the prime of their lives. Besides, if it were bad parenting, then my other boys would have it.”
Bill’s doctor wouldn’t talk to us about our son. HIPAA confidentiality laws prevailed. I will never forget his statement to us as he dismissed us: ”He’s got schizophrenia. It’s a life time illness and there’s no cure. You might as well get used to it.” Bill was 19 with an IQ of 180 and considered an adult. He was still my child yet I could have no information about him from the doctor. No one told us we could get a release of information signed by Bill allowing us to know about him. We didn’t know the meds they gave him could cause his jaw to lock up, so when it happened, it was like pulling teeth to find out what to do. Bill was panicked and so were we. Imagine taking a med that caused that side affect. Would you still take it? What would you do as a parent?
I slowly learned that asking a person who is untreated to get better, is like asking a person to run a marathon with a broken leg. It’s impossible. However, put the leg in a cast and they may be able to hobble along. That’s like giving medication to those with mental illness. Give crutches or a wheelchair to the runner and their opportunity to finish the race improves. That’s like finally finding the right medication without the side affects that cause people to stop taking them. Finally, add physical therapy to heal the broken leg. That’s like getting programs which provide stable living environments, teach life skills and hope. However, remember, just as a broken leg sometimes results in arthritis and other problems, there can be life-long difficulties and challenges with mental illness. Those with mental illness can be productive members of society, but they need early intervention, a stable living environment, medications without side affects, and good programs aimed at improving the effects of their disability.
After yelling at God, I got on the phone and called every mental health organization I could find in the yellow pages. I called hospitals asking for help. When I asked about a cure, one worker at a local hospital told me, in his experience, age was the best cure. He said that while young people were the ones who got schizophrenia, they often got better as they got older. He gave me hope. I finally found a wonderful lady who also had a son with schizophrenia. She allowed me to cry, vent, and yell. She understood what I was dealing with, including not only the illness but also the medical profession and archaic laws and the health care limitations we faced. She directed me to NAMI (National Alliance on Mental Illness) and their support groups for families.
Over the years, Bill’s illness has taken its toll. He doesn’t have any friends. His guitar is his best friend and thankfully he has not lost his talent and ability on it. He has even taught himself to play the piano and keyboard. He has had numerous serious suicide attempts and many weeks in ICUs. One attempt left him with facial nerve damage, an endearing crooked smile, and deaf in one ear. As he’s gotten older, he’s finally found the right medication, a twice monthly group he enjoys, and a great doctor who involves the family in his treatment. He still plays his music and has written musical pieces. He lives in a board and care of his choosing and has found the medication that works for him.
The illness took a toll on the family too. His older brother refused to discuss Bill’s illness as, if by doing so, it would go away. He had moved out and was in college before Bill became sick and when remembering his little brother, he said, “He’s not my brother anymore.” It was too painful to acknowledge the truth. Over the years, as he watched his brother struggle, his attitude came full circle. He’s become one of Bill’s best cheerleaders.
Bill’s younger brother was full of anger and hatred toward Bill, his dad, and me. He had to take the role of an older brother and he resented it. Since most of my husband’s and my attention and time was spent working with Bill, Dan resented that we weren’t available to him as we had been before. It was totally understandable. I’m very thankful to the wonderful lady who became his wife. She helped both Dan and me understand the dynamics of what happened and helped us to heal the resentments. We have all learned not to hate or resent Bill, but to hate the illness instead.
Then there’s our marriage. After 30 years together, my husband and I decided to go our separate ways. The illness began to put a communication wedge between us that became impossible to bridge. It hurt too much. We both found others who would listen. It was too difficult and painful to discuss with each other.
Healing and moving forward is possible. It takes energy and perseverance. For me, the NAMI organization was a God-send. Maybe God heard me yelling after all. In the NAMI Family to Family program there is a saying which directed my life after I completed the course. “Got a Gripe? Get a Goal!” Believe me. I had lots of gripes about the mental health system. I found goals.
I became very involved in the NAMI organization acting as president of my local affiliate and running support groups for families. When I learned about the NAMI Family to Family Education program, I assisted in bringing the very successful 12 week family education program to California. I became a state trainer for Family to Family and have taught over 50 classes. I also served on the NAMI state board for six years. By helping others and listening to their concerns, which were so similar to the problems I had faced earlier, I was able to understand Bill better and to respect the strength he has while living with his illness. We became good friends. Bill allowed me to tell his story. His story has helped many other people learn about the challenges they face and how to cope with them.
As unfortunate recent headlines have shown us, there is still a lot more to do. There is still discrimination about mental illness. It keeps people from getting the help they need. More education is needed in schools because schizophrenia is a young person’s illness. It is rare for an adult over 30 to get schizophrenia.
There aren’t enough out patient programs or housing facilities with progressive programs available. While waiting for an opening, some get worse and act out in tragic ways. That needs to change.
There are still laws which don’t allow families or friends to get help for their loved ones because they are “adults” and aren’t considered a danger to themselves and others until they actually do something drastic or something unfortunate happens to them. By then, it’s often too late. Just look at the many homeless mentally ill. That needs to change.
Police are often the first line of care and they aren’t trained mental health professionals so they make mistakes, some of them tragic. That needs to change. Training of law enforcement is critical along with having mental health professionals available to back up the police.
Budget cuts have destroyed many good programs that were working. They need to be rebuilt. Too often budgets are balanced on the backs of the most vulnerable. We should all be very concerned that more lives will be lost forever with the cuts states have made to their mental health budgets.
As for the present, Bill is doing very well. As the hospital worker had promised me, Bill has improved as he’s aged. He’s enjoyable to be around. I get regular hugs from him. He recognizes and understands that the voices he hears are not heard by others and that he can ignore what they tell him. I’m astounded by the strength he shows while he has learned to live with his illness. I’m very proud of him.
I completed my own healing by helping others. With the help of my local NAMI affiliate and many wonderful volunteers, I started a small nonprofit called Welcome Home Housing. It’s a small attempt to provide stable, permanent housing and support for 24 adults with mental illness. As my new husband, Al says, “If everyone did a little, a lot could be accomplished.” Look around to find what little bit you can do.
We just had a glaring incident of how untreated serious mental illness impacts the community.
A young homeless man that I know well and love, had an extreme outburst in front of our apartment. I don’t know what set it off. He was eating a box of cereal and drinking some milk. Then I heard him yelling at the top of his lungs. He started chasing another person down the street.
My neighbors across the street called the cops. They were terrified because they have two young boys and they didn’t want them to witness what was going on and they feared the young man could hurt someone.
The officers who came are well trained in crisis intervention. I asked them to try to take him to a hospital. They said they’d try but wanted to let him cool down first.
If he didn’t have the ‘right’ to be so ill, he’d have received the treatment he needs long ago. But the way the system is designed, he’ll have to demonstrate dangerousness, likely in the presence of law enforcement, before he gets any real treatment.
Turns out he was taken to the ER a week ago on a psych hold. The ER discharged him within 24 hours.
If he’s released early again, this family will be afraid of his next incident. It’s not fair that they should have to deal with the failures of the system of mental healthcare.
To: Oregon State Legislature
Re: My Son
Date: March 18, 2011
My son was lodged in Marion County Jail for 16 months (charged with Burglary 2 and giving false information to the police). After the judge ordered an aid and assist evaluation, my son waited nearly three months before being transferred to the Oregon State Hospital (OSH) for an aid and assist evaluation. As a person living with mental illness, this was not his first involvement with Oregon's (flawed, inadequate) mental health and criminal justice systems.
At OSH, he recently passed his "aid and assist" test. He was discharged from OSH and transported back to jail where he awaits another court date. Recently, I wrote a letter to the Director of Consumer and Family Services at OSH about my son. These are some of the concerns I shared:
An interdisciplinary team meeting was scheduled at OSH for my son. That same week he was transferred back to jail, before the meeting could take place. That meeting should have taken place at OSH before he was discharged. I had planned to attend. He and his care team would have been there. His evaluation, medical progress, legal situation, and his options would have been discussed. Also, he was receiving dental treatment and had another appointment scheduled. Because of the sudden discharge, this treatment was never completed. This is one example of the lack of coordination between agencies. This system needs to be improved to put the best interest of patients first.
I spoke with my son's attorney the day he was discharged. She wasn't sure what was going on with him or when his court date would be. She said she would check into it and get back to me. It's almost impossible to talk with staff, counselors, and medical personnel at the jail, even when my son has signed waivers. There are no realistic family communications systems in jail. Visitation is limited one time a week for 30 minutes. Visitors speak on a dirty phone through plexiglas wall in a small, bleak room. Mail is limited to postcards only.
In comparison, OSH patients are allowed visitors six days a week for one-and-one half hours and visits are face to face in open, more human visiting areas. Patients can write and receive letters. Family members can communicate with staff and attend meetings.
In jail, my son has been over-medicated (sedated) for convenience. A jail is not a medical facility and only minimally addresses medical issues.
While at OSH, with his medication reduced, he did very well. He had a good doctor and an interdisciplinary treatment team. He wasn't belligerent with staff and wasn't involved in any altercations. Staff members remarked on how well he was doing and how cooperative he was.
However, instead of encouraging him, the system sets him up to fail. His medical condition, his ability to stay well, his willingness to stay clean, and his determination not to reoffend are all compromised by taking away the long term care and support he needs to become increasingly responsible and independent.
Marion County (jail and health department) may have his name on their caseload list, but they do not have the resources to provide the services he really needs. When under Marion County's mental health system, he didn't have regular doctor visits, no real safety net existed, and he's been left on his own in the community - to sink or swim - without any true transitional support.
He has been turned away from Salem Hospital's emergency department. He was self-aware enough to understand that he needed medical attention, managed to make it to the hospital, and presented himself to hospital staff. Although he was in crisis and seeking help, he was turned away (back to the streets). They said he wasn't in "imminent danger" (even though his mind was in crisis).
It breaks my heart to know he must hit rock bottom (again), commit criminal acts (again), and "become a danger to himself or others" (again) in order to receive even short term mental health care - IF he isn't shot or killed by police or criminals (again).
What kind of a system do we have where a person must commit a crime and plead "insanity" in a court of law before receiving the medical treatment they need?
Imagine if cancer patients were in the same situation. What if they were required to become desperate, self-destructive, and criminally active before they could access and receive the medical treatment and care that they required? Then there would be a public outcry.
People living with mental illness also deserve to be treated with dignity and respect. They deserve to have the support and professional care that anyone with a chronic illness should receive, including a logical continuum of care. The individual, his or her family, and the entire community would benefit.
When my son was a little boy, he never said, "Mom, when I grow up I want to be a criminal." A jail is not meant to be a treatment facility. A plea bargain and probation are enticing options to him. No one wants to be locked up or stigmatized. From the revolving door perspective, he will end up back on the streets, homeless, or rooming with bedbugs and cockroaches in some outrageously expensive and inhumane "placement." Speaking from past experience, that lifestyle also includes self-medication and associations with people who do not have his best interests at heart. He will spiral downward until he has another psychotic break, commits a crime, is injured or killed. If he isn't killed, he is likely to be arrested and jailed (again). Statistically, he is also likely to live 25 years less than if he were not a person with a mental illness. He is also at a high risk for suicide.
My son is an intelligent, creative, 35-year old man who deserves a chance to live a better life than I've described above. He needs appropriate medical and therapeutic treatment to become stabilized. It takes time to become well and master the skills necessary to address and replace long term habits, perceptions, and behaviors.
I believe my son has the ability to change, to become a healthy and productive member of society, and that he deserves a chance for happiness, companionship, and fulfillment in his life. We give lip service about the "the civil rights of the mentally ill." What about the right to life, liberty and the pursuit of happiness? These are all things he wishes for himself, and that I wish for him.
This is America.
Sincerely, Carole M.