Dotti: Surviving my son’s mental illness

I now feel a freedom I have not experienced since I stood on top of that mountain in Colorado so many years ago. My journey has turned out differently than I had anticipated, but I appreciate a wisdom and understanding I had not known before.

I packed my skis in my bright blue Ford Explorer and left Virginia to drive back to my home state of Colorado. It was fall, our three kids were in college, the empty nest syndrome had become very real, and I needed a time-out. I set out on a new adventure to reach back over the years and reclaim myself, that young girl I had abandoned so long ago. She was strong and fearless when she first arrived in Washington, D.C. working the challenging decade of the ‘60’s on Capitol Hill. Now after raising three children, she was ready for something new, something different, something hers.

I rented a little condo overlooking beautiful Lake Dillon and landed a job at the Keystone Ski Resort. All I wanted was a bottle of water, a bottle of wine, and my skis. I felt a glorious peace and simplicity. A sense of freedom. At 9,200 feet, I was on top of the world; breathing deeply the mountain air and embracing a world that suddenly seemed vast and wide open.

That joyous feeling was short-lived. A call from my husband propelled my life into a strange new universe. Mike, our 22-year-old son, a senior at a Virginia University, had been found running down the center of a major highway, 18-wheelers swerving around him as he kept up with the voices telling him to run faster. The police picked him up and took him to a nearby mental hospital.

I was on the next plane back to Virginia, my new serenity melting like a mirage. My stomach churned with fear and dread. A mental hospital? How could this happen to my compassionate and loving son? Mike was intelligent and strong. He was healthy and very aware of the nutrients he put into his body. He had a passion for peace and nature, was active in the Earth Day movement, supporting and protecting the environment. The second of my three children, Mike always did well in school. He was the middle child – the quiet sensitive one we didn’t have to worry about.

At the family home, Mike slumped on the living room sofa. He glanced at me and then looked away. He was silent. Withdrawn. There was a blankness in his expression, a sense of loss; he wasn’t there. That familiar spark in his beautiful brown eyes was gone. When I realized how distant this stranger was, how far he was out of my reach, my heart wrenched.

Feeling helpless, I flew back to Colorado as Mike headed back to school. He was taking medication but was still having a difficult time. He couldn’t concentrate or control his agitation. He moved into an apartment near the campus with his brother who tried to keep an eye on him. But Mike’s erratic behavior kept surfacing unexpectedly. Some nights he would become violent, picking a fight. One night he was taken to the psych ward but then after a heavy dose of medication, discharged the next morning. Not knowing how to handle him, his brother called me often, seeking advice. “Mom, I don’t know if he’ll come home at night or end up dead somewhere. I don’t know how to help him. I don’t know what to do.” Mike also called, frustrated with his medication, which caused his muscles to twitch and his eyes to “freeze.” He knew he was no longer “normal” but none of us realized how sick he really was.

His dad sent him to visit with me in Colorado where I shared with him Lake Dillon, the blue skies, and the snow-capped mountains. I was sure he would thrive in the sun, the clean air, and the peace and quiet. We took long hikes during the day, and talked into the night, trying to understand how his illness had changed him. He was confused and angry. He was gentle and calm. He was talkative. He was quiet and withdrawn. When he became upset, I knew his anger was not at me but at this scary, unmanageable disease. He pleaded with me to help him become well and normal again. He could not control the delusions and voices in his head, his actions, or how he wanted to live his life.

I moved back to Virginia, determined to help my son. He was finally diagnosed with paranoid schizophrenia and we needed answers. Where do I go for help? How can I help him get his life back to normal? What is the right medicine? Will he stay on it? How do I keep him safe? How do I keep those around him safe?

Thousands of dollars were spent at private hospitals and I took him to private doctors all over the country as well as relatively unproductive visits with a multitude of psychiatrists and therapists.

Adults with paranoid schizophrenia exhibit a startling range of behavior. They can be quiet and withdrawn, delusional, paranoid, erratic, violent, grandiose, nervous, argumentative, and sometimes very normal. Many persons with this disease do not believe they are ill, so they resist taking their medication or requesting help. Mike knew something was wrong with his brain. And, he felt the medication was causing further brain damage. He could not tolerate the unbearable side effects such as tardive dyskenesia, which caused involuntary muscle movements, akathisia that caused restlessness, and his eyes would freeze while he was driving. He hated the meds and became paranoid of the very thing that might help him recover.

When Mike was 27, he could no longer handle the agony of his illness. He said the voices were driving him insane and the torment was excruciating. I saw his anguish and I was powerless. His eyes met mine, pleading: “Could you help me do the Kevorkian thing?” He wanted to release it all and die. I was so desperate that I found myself considering the idea for an instant. Pushing the thought away, I mustered a hopeful smile and a prayer. “Let’s give it one more year,” I said. “We’ll see how you’re doing by then.”

Mike’s unpredictable behavior always caused us concern. One day a neighbor called. He had wandered into her house and she was frightened. His Dad and I had made an appointment to take him to a mental health facility in Maryland. It was early evening rush hour traffic as we sped along the fast lane on the Washington Beltway. Mike was in the backseat, subdued and quiet – until he realized where we were taking him. He suddenly yanked on the door handle, pushing against the door. I screamed from the front seat and grabbed his arm, hanging on to him, struggling to keep him from jumping out of the car.

The door opened and he tore out of my grasp. His body was sucked out of the car and he tumbled into the lane beside us. As his Dad hit the brake, I looked back and saw him roll, then struggle to stand. Behind him, a tractor-trailer bore down toward him, full speed. Mike was covered in blood, reeling in confusion, and glowing white in the truck’s headlights. Cars began veering left and right, screeching to a halt. The huge truck stopped just short of him. Four lanes of traffic came to a halt. Then, in a second, Mike was gone.

As I saw him run up the Annandale exit, I jumped out of the car, ran across three lanes of traffic and followed him. A car stopped and the driver yelled, “Are you looking for a young guy, all beat up?” I shouted, “Call 911! Tell them he’s mentally ill. He’s not a criminal.” He motioned me into his car. “Let’s go find him.”

We found Mike sitting on the grass near a shopping center, surrounded by the police who had called an ambulance. I rode with him to the hospital, worried, not knowing how badly he was hurt. They rolled him in on a gurney, his face pale and very still. “I know God wants me to live,” he said quietly. “I just have to find out why.” I was aware that he was seeking some purpose for this horrible and difficult challenge in his life.

I began to realize that I couldn’t manage Mike’s illness or his wellness. I had to release the control I tried to keep over his life. I had to stop feeling his pain throbbing in my gut. And, I needed to release the ache in my heart so I could function, so I could live my own life and thereby give him the independence, responsibility, and opportunity to live his.

I began to learn about our mental health system and about my son and others with brain disease. I realized that one of their worst enemies is rootlessness, the inability to find a permanent home, a safe haven with others who share similar challenges. I saw that housing is almost non-existent for adults with serious brain disease. I knew that if we could provide the stability of a safe home with treatment, we could keep them off the streets and out of shelters and jails. Housing for adults with mental illness became my passion.

I reached out to the world around me in a way I never had before. With friends and family, we created a non-profit called Wings House, Inc. Modeled after HUI, a successful program in Maryland, we felt that safe, supervised housing for this forgotten segment of our population would be healing medicine. Dinners, garden parties, dances, and other activities raised more than $30,000 and we were approved for a grant from the Virginia Housing Development Authority.

We found a beautiful 6-bedroom house on a wooded lot in Annandale, close to a shopping center and bus service. The owners, family friends who were moving to Florida, had a son with chronic depression who would stay in the home with his pets and a few other young men with similar challenges. We cleaned, painted, and furnished the house. Mike and the others eagerly anticipated moving into our dream home. But that dream was crushed. We made the fatal mistake of partnering with a large non-profit involved in affordable housing, and when they gained the title they refused to permit us to manage it. (A beautiful home they later let go into foreclosure). We lost the house and my son lost his home. He landed in the hospital; I lost my focus. Employment from the time he became ill was increasingly difficult for me and I lost my job at a local law firm.

I reflected back on what I had learned. For 14 years I had experienced Mike shuffling through the revolving doors of our mental health system.
He was jailed 66 days and then again 38 days both times in solitary isolation for petty misdemeanors. Each time he deteriorated to the point of mental breakdown, forced to “fit the criteria of suicide” before a judge declared him incompetent enough to receive a hospital bed. Each time he lost more than 30 pounds. His long hair and full shaggy beard were clearly indicative of the poor care he received and his inability to care for himself. Yet, we knew that if we bailed him out, there would be no treatment available for him. When he was finally transferred to a mental hospital, the nurse told us it took ten hospital personnel to get his raging shackled body from the police car to the gurney. The scars on his legs and wrists from the metal shackles were deep and ugly.

My daily chronology of his experience in the county jail still brings tears to my eyes. Criminalizing mental illness is common here in Virginia and around the country. My son still has the mental, physical and emotional scars from his devastating and tragic days in jail. So do I.

Mike has been in psychiatric hospitals at least 17 times, most times for 3 to 5 days, drugged up and discharged. Virginia law states that one must be in “imminent danger” to himself or someone else. Even if they are in such danger, their own reasoning denies it and because they have “citizens’ rights” and confidentiality laws, parents are left unable to help. Although I took him to the emergency clinic bleeding after he tried to cut out the CIA bugs implanted in his legs, he did not qualify for treatment. He was not killing himself. Although he was evicted from his apartment for pushing his maintenance man, he was not of danger to anyone else. He did not qualify for a bed and I was told to take him to a homeless shelter.

Over the years, Mike lived in homeless shelters for 101 days. In one shelter, the facility’s caring staff included a mental health clinician who assisted him with his medication and he received three meals a day. I honor the Volunteers of America and their untiring compassion. Another shelter included an old gutted-out single trailer where the homeless sleep like sardines on the floor and the stench burns your eyes and breaks your heart. Incredibly, he was taken from the hospital psychiatric ward in a Medicaid cab to this old warehouse Fairfax calls a shelter. He was 41st on the wait list. Because he had “overflow” status he slept on a mat on the floor and did not qualify for psychiatric help. He was forced out by 7:30 a.m. and could not return until 4:30 p.m. It was freezing weather and he stayed warm by lugging his belongings from McDonalds to Burger King to 7-11, moving every half hour to prevent the police from taking him to jail for loitering. I brought him home.

Parents learn that providing beds for their mentally ill adults causes even more problems. Mike resisted his medication and because we had no legal way to force him to take it, the arguments and difficulties living together were impossible for us all. My support group advised that if they go off their meds, they should be put out until they “get it”. Tough Love Stuff. I never could understand where to draw the line between Tough Love and the Disease. We also learned that if we provide a place to live, their names go to the bottom of the housing lists and treatment and community services become non-existent. I knew I could not care for him without professional help.

My son spent time in a mental health institute in Fairfax County (which continues to lose beds due to a decreases in the budget). It was a blessing to know exactly where he was. He was safe. He had a bed. He received decent meals. He was not in jail. His team of psychiatrists and staff searched tirelessly for the “right” medications. Finally, feeling “institutionalized,” he became determined to find a place to live on his own. Still not stable he was discharged with no treatment plan, no community services, and no safe place to live. His ‘home of his own’ was a tiny room in the basement of an old house with five other residents, two pit bulls, two cats and a shotgun leaning against the jam of the front door. The only treatment he received was 15 minutes a month with his psychiatrist and 30 minutes a month with a therapist whose time was limited because she had 49 other clients.
In my role as an advocate, I calculated that the cost of my son’s illness to the state and county for 842 days in hospitals, jails and shelters was more than $365,305. I learned that the cost of housing four people in a semi-independent group home with a part-time counselor, including medication management, and crisis care if needed is less than $28,000 per person per year!

Psychiatric hospitals are being closed and our jails are filled with people with severe brain disease. Communities do not receive enough funding for services or housing. Insurance companies refuse to provide insurance. Archaic “imminent danger” laws and unbending rules and policies hinder treatment. Our destructive privacy laws seriously prevent families, friends, teachers or professors from assisting those who are acting “weird” or having mental health problems. The severe social stigma and discrimination surrounding brain diseases, so pervasive yet not acknowledged in our society, are devastating. And there is little help in sight.

Virginia is a striking and very sad case in point. We lost 33 persons due to an untreated brain disease. Although Virginia is a very wealthy state, it is 47th on the list for Health and Human Resources. Funds continue to be cut year after year. In May 2006, Fairfax County suffered the loss of five citizens due to untreated mental illness. Michael Kennedy’s parents sought help many times but could not receive appropriate mental health treatment for their son who killed a policeman and a young detective at the Sully Police Station. Two mothers were killed by their mentally ill sons that same month. The answer for our elite county was to put stronger and newer fences around our police stations at a cost of $17 million. Moms don’t ask for fences; we ask for treatment.

Parents have seen the results of their sons and daughters thrown on the ground, pushed, maced and tazed by the police. We’ve seen the bruises. Whenever my son was arrested, his glasses were always left on the ground. He is legally blind. We’ve seen aggressive police move in so close that the frightened mentally ill person must “defend” himself. This then becomes an “assault charge” which then forces the family to face attorney’s fees, bail, and court costs while their very sick child receives archaic, inhumane treatment in the R-Cell of the Fairfax County Detention Center which only forces him deeper into his insanity.

Thankfully, a Jail Diversion Crisis Intervention Training (CIT) program has been established in Fairfax County where some police are trained in working with persons with mental illness, hopefully taking them to a mental health facility rather than jail. This will become more effective if appropriate emergency treatment and hospital beds can become more available. I watched a CIT policeman work with my son. He stood back, gave him his own space, and talked in a low compassionate voice. It made a huge difference in my son’s reaction.

I have watched mentally disabled adults struggle through the revolving doors and fall deeper into the cracks of our broken health system. Our laws protect the “rights” of the mentally ill, trusting that their own reasoning and judgment will obtain treatment when they need it. However, because many don’t realize they are sick, they refuse treatment and it places society at risk. Indeed, persons with brain disease do have rights. They have the right to good treatment, to proper medication, to safe and affordable living conditions, and in so doing, society will have earned the right to safety.

Finally, I received a call from the director of Pathway Homes, a supportive housing program. We had discussed Mike’s situation over the years but there was never an opening. He told me they had a room in a home in Reston with three other men. A counselor, medical management, and crisis care would be available to him. Mike would finally have the opportunity to better manage his illness. There are over 550 people on Pathway’s waiting lists for housing! I felt incredible relief and gratitude.

Mike has now lived in this home for over ten years. He is doing well. His roommates are helpful to each other. They shop, clean the home, cook, take walks and do quite well together. His roommate Jim teaches computer classes to others with mental illness. Mike is sharing his knowledge of nutrition and proper healthcare. His brother gave him a laptop for Christmas and he no longer fears the ‘electronics’ of a computer. About one-third ($200) of his monthly Social Security benefits (SSI) pay the rent and a caring counselor works with each tenant. He has returned to a hospital only once to regulate his medication and has never again experienced the cold devastation of an isolated jail cell.

Housing is still my passion for I know that if we can provide our disabled citizens with a safe supportive place to live, we can help them. With renewed energy, our non-profit, Wings House, Inc. joined The Brain Foundation which purchased its first house in November 2006 with a VHDA loan and private funds. Within a month, donations from our community completely furnished the home. Four men happily settled in with treatment services eight hours a week. The Brain Foundation now has nine houses. Thirty-six residents with brain disease can enjoy their new homes. We continue to make progress! We are helping wellness and stability happen!

I now feel a freedom I have not experienced since I stood on top of that mountain in Colorado so many years ago. My journey has turned out differently than I had anticipated, but I appreciate a wisdom and understanding I had not known before.

This disease has changed all our lives – forever. My expectations for my son were high and filled with hope and dreams. He was smart and beautiful and full of life. And then, in a moment, he was someone else. His lust for life was shattered, his dreams became raging nightmares and none of us knew what to expect ever again. He survived situations and challenges no one should ever be expected to live through, and many don’t. Incredibly, he graduated from college and I honor his stamina. He is hanging in there. I applaud his courage and his desire to live. I appreciate from the bottom of my heart the patience and caring and love from all those who have helped him accept and manage this devastating disease.

We do have answers to Virginia Tech, Tucson, Aurora, Newtown, and for all those families who daily try to assist their loved ones with chronic brain diseases. We don’t need more expensive studies creating glossy reports to nowhere. We already know that we need more hospital beds rather than jail cells. We need discharge plans and outpatient care with therapists who are not overloaded with paperwork but have the time and ability to help their clients understand and manage their illness. Many of our homeless have a brain disease and our shelters need mental health therapists and proper medication. Housing is vital and I have found that group living is not only less expensive, but they help each other manage their disease. We have proven that group living works!

Brain disease is a disease just as is cancer, diabetes and heart disease. Would we tell a person having a heart attack that there was no bed and put them out in the street to find their own way? Why do we deny treatment when it is the brain that is hurting?

The Brain Foundation is a totally volunteer non-profit based in Centreville. Our homes are located in Annandale, Fairfax City, Fair Lakes, Reston and Fairfax. We also have a sister organization in Orlando, Florida which has a goal of 20 by 2020. If you are interested in setting up your own home, or in learning what and how we are creating wellness through affordable and safe housing for people with brain disease, or if you would like to donate, please contact us.

On December 13, 2016, President Barack Obama signed H.R. 34, the 21st Century Cures Act into law. This sweeping healthcare law addresses the discovery, development and delivery of new drugs and medical treatments. It gratefully includes substantial mental health reforms as listed in Representative Tim Murphy’s (R-PA) “The Helping Families in Mental Health Crisis Act.

— Dotti McKee