Our experience in the US mental health services and how I lost my husband

The United States must address the needs of its most vulnerable those suffering from serious mental health issues and their carers. There are thousands of sad tales of family members who lived with untreated mental health issues and this is mine.

According to the National Alliance on Mental Illness (NAMI), one in five adults experiences a mental health condition every year.  One in 17 lives with a serious mental illness such as schizophrenia or bipolar disorder. People living with a serious mental illness are often unwilling or unable to seek help on their own. Many times, they do not believe they have an illness and that is all a part of the illness.

When a loved has a severe mental illness, the entire family is affected, and many caregivers have depression themselves from the stress and emotional roller-coaster felt while caring for a loved one.

Read more: My mother’s mental health and its ripple effect on my life

Severe mental illness is not a fun topic and the media tends to focus on it for a few days after a national tragedy and then the issue tends to die down until the next tragedy. Maybe part of the problem is you just never think it is going to strike your family.

Back in 2002, it was the last thing on my mind.

My husband Joe was a happy and healthy 45-year-old man in the prime of his life. In December 2002, Joe was laid off from his management job at Xerox, in Manhattan, and it left him heartbroken. For the next two weeks, Joe stopped eating and he found it difficult to sleep.

Joe and I lived a comfortable middle-class lifestyle, but he now worried about money constantly. He worried about how he would be able to take care of his family.

Two weeks after losing his job Joe had a nervous breakdown on Christmas Eve. The breakdown triggered bipolar which his doctors did not immediately recognize.

After a bad reaction to an initial prescription of antidepressants, Joe refused to treat the bipolar and he refused to believe he had a mental illness. It was hard for me to believe in the beginning.

Left untreated the bipolar began to overtake Joe’s life and I was not ready for the mayhem and chaos the next eight years would bring. It was truly a nightmare and I experienced how little help is available for families like mine.

Joe had always been a warm and loving man. He was a gentle father and a tender husband. But the illness changed Joe into someone I did not recognize. He became moody, depressed, constantly agitated and he would fly off the handle at the smallest thing now. I deeply missed the old Joe every day. I missed his love, his laughter, and his companionship. 

Joe's illness affected every area of our lives. We began to limit the visitors to our home because of Joe's unpredictable behavior. And as Joe's circle of friends got smaller and so did mine. I was overwhelmed and frightened for our future. There were times Joe could not work and we faced financial hardships.

Read more: An ode to Ireland on St. Patrick's Day - how it healed and changed me forever

I was working full-time while caring for Joe and raising our daughter. Joe was no longer involved in simple decision-making matters. Everything now relied on me. I became hopeless and I constantly felt impending doom. I just knew this wasn't going to end well.

Because the bipolar was not being treated Joe’s condition and his behavior escalated.

Joe threatened me most days in person, by phone, and through email. Some nights I pushed furniture up against my door when I went to sleep fearing he would harm me.

One night after waking up during the night to find him standing over me, I began to take the plastic that covered my dry cleaning and I lined the floor of my bedroom with it in hopes I would hear Joe walking on the plastic if he entered my room during the night.  

On days when Joe got paid, I drove to the bank while he was in the shower and I transferred money into a bank account in our daughter's name to later pay the mortgage.

We did not own a gun but if we did, I would have removed it from our home immediately. Having a gun in a household with someone who has an untreated mental illness is just a tragedy waiting to happen.

We experienced the common revolving door of treatment for mental illness.

When Joe was hospitalized, he was medicated, and his condition improved. A few days later he was released, and he then stopped taking the medication.

Once fearing Joe would hurt me, he was taken from our home by the police and transported to a local hospital for treatment. Five days later the hospital sent him home in a cab without informing me and even paid his one-way fare. Once home Joe again refused to take medication. Each time this happened Joe’s condition worsened, and he suffered.

Four years after getting laid off, I pointed out a swollen area on Joe's neck to him. Days later a lump appeared on his neck, but Joe was sure the lump was a result of a loose tooth. Joe could not understand his tooth was loose because there was a cancerous tumor growing under his jaw. But instead of going for help he ordered antibiotics online from Canada and he ordered two dentist drills online.

When Joe finally agreed to go to an oncologist he sat and listened intently as the doctor spoke. As soon as we got into our car Joe said, "That doctor is a quack."  I did not tell the doctor that day Joe had an untreated mental illness because Joe asked me not to and I didn't think it was a good idea to tell the doctor this information in front of Joe.

I decided to call the doctor later that afternoon. The doctor was very short with me, "Do you know I am an oncologist? Why are you telling me this? Hang up and call his psychiatrist." Standing in the hallway of my workplace I began to cry, "That's the problem doctor, Joe doesn't have a psychiatrist. He will not go to a psychiatrist."

Unless you have gone through something like this, I do not think people understand just how difficult it is to get someone help when they do not want help. I found there is a mental illness-related stigma even in the health care industry which created a barrier for us to reach quality care for Joe.

Hours earlier as we sat in the doctor's office as a newly diagnosed cancer patient and his wife, Joe and I were treated respectfully. There was an action plan in place to treat cancer which was growing rapidly in Joe's neck and jaw. The doctors and nurses were so compassionate. They felt terrible for this young man who they knew was so ill. There was a sense of urgency about his illness. They were even proactive and making needed phone calls for us for various tests for Joe. The nurses always made sure Joe was comfortable and they were even kind enough to offer us coffee while we waited for the doctor. I was so grateful when they gave us free passes, so we could use the valet parking to make it easier for Joe. It was a great help and it eased Joe's suffering.

One month later, Joe had another breakdown and he was now in the psychiatric ward of the same hospital where he had gone for cancer treatment. The entrance we used when Joe was a cancer patient was beautiful and clean and there was a grand piano off to the side for when someone passing through wanted to play the piano. Beautiful artwork hung on the walls.

The first time I visited the hospital after Joe's break down the security guard pointed for me to go down a hall and make a few turns to find the elevator leading up to the mental health section of the hospital. Assuming I was going down the wrong hall I went back to the security desk explaining he sent me into an industrial area of the hospital. He assured me it was where the mental health section was. I went back and found about 20 people waiting for the freight elevator which was sent down when visiting hours began so we could all board together and go and visit our loved ones.

It was a crowded elevator ride and we didn't make eye contact with each other. Some people were crying, and I remember thinking everyone looked so weary. Once in the mental health section of the hospital, we all stood in line to have our belongings searched while our loved ones watched from the television area of their unit.

There was a vast difference between the mental health ward and the cancer ward of the same hospital. Joe didn't ask for either illness and both were an equal tragedy.

One day while Joe was in the hospital a psychiatrist called me on the phone and asked, "What happened to Joe? How did this happen to him?" I sat down and told him the entire story. Some time had passed and there was silence on the other end of the phone. I thought we had gotten disconnected. I asked, "Hello? Hello, doctor are you still there?" He responded, "Yes, I'm listening and I'm speechless. This is the saddest story I've ever heard."

My husband died six years ago. Since then I have learned of so many stories just as sad in America and in Ireland. Stories of wasted lives and lives cut short. Without treatment, the consequences of mental illness for the person and their families are staggering: parents losing their children to suicide, inappropriate incarceration, unemployment, substance abuse, and homelessness.

Every person with an untreated severe mental illness has their own story and, in each story, there is a turning point. The point where they didn't get the help they needed.

America must address the needs of our most vulnerable citizens and offer more support for the families caring for them.

Is there a group of American citizens more deserving of protection and care than a vulnerable person with a serious mental illness?

If you are affected by the content of the article please reach out and talk. You can contact information for mental health resources in Ireland and US here.

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