I am publishing two personal stories this week by readers who describe their encounters with our failing mental health system from much different perspectives.
My Husband Joe
By Kathleen Maloney
My husband Joe and I enjoyed 18 wonderful years together. We had a beautiful daughter and our lives were filled with love, laughter, joy, hard work and exciting plans for the future.
That was before he got sick, before he was diagnosed with a mental illness.
The first sign came in December 2003 two weeks after Joe got laid off from a company where he had worked for 20 years. On Christmas Day, he became so distraught he collapsed on the floor. At the emergency room, a doctor suggested that it was stress that caused him to become depressed. Joe calmed down and we made a follow up appointment with our doctor. I was driving Joe to that appointment when we stopped at a red light. Joe glanced at me, reached over and gently patted my shoulder. “You’re a nice girl,” he said. “You’re a nice girl.”
The light changed but I didn’t drive forward. “Joe,” I said, “I’m your wife. You’re my husband.” A look of fear swept across his face and he pushed me away.
“Oh no,” he said, “your husband is gone and he’s never coming back. Do you understand? He is never coming back.”
I remember this moment because it was when we began speaking in our family about the days “before Joe became ill” and “after Joe became ill.”
Our doctor put him on an anti-depressant that actually made him feel worse . Joe was then seen by a psychiatrist who diagnosed him as having Bipolar II disorder. The doctor prescribed a different anti-depressant and mood stabilizer. I was relieved when we stopped at the pharmacy to fill them. But Joe decided he didn’t have bipolar and he put his medication in a drawer. He said he wasn’t sick.
Much to my surprise, he seemed better after a few weeks. He dismissed my worries, by telling me that he wanted to put the entire episode behind and never wanted me to mention it again. He found a new job and it looked as if our life was getting back on track.
And then his bipolar disorder came raging back. During the next six years, it took over our lives. We lived from crisis to crisis. Our family became unsettled. Nothing was predictable. Thankfully, Joe was never physically abusive to me nor did he self-medicate with alcohol or drugs. But when he became manic, he would go on spending sprees, buying items we couldn’t possibly afford, such as an expensive boat.
Once an expert handyman who took pride in his home, Joe seemed unwilling to fix anything, and became enraged if I tried. He became irritable and began withdrawing from our family and his friends. He’d always been an animal lover. Now suddenly, he had no interest in them. It was heartbreaking to see him screaming at our beloved cat. I grew increasingly protective and worried about our pets because Joe would call me when I was at work threatening to leave the doors open so our pets would run away.
He seemed to take delight in tormenting me. He began posting notes in our kitchen, sometimes leaving as many as twenty per day, attacking me. I tried to get up extra early in the morning to collect them before our daughter woke up. He called me offensive names, which he had never done before.
People who have not lived through a daily ordeal such as this do not understand how anyone could allow this to happen. The sad truth is that you don’t have control over what someone else does. You can’t force someone to do something they do not want to do. My husband refused to believe he had bipolar disorder and there was literally nothing I could do to change his mind or help him. I felt trapped at times and constantly grieved the loss of the person I once knew, the happy life we once had and the many dreams we once shared.
In 2009, a large lump appeared on Joe’s neck, but he didn’t believe he was sick and was afraid to go to the doctor. He began slipping into the bathroom at night with a box cutter, trying to cut the lump off. He would bandage his neck and go to work the next day. I tried to convince him to go to a doctor but he refused. He was in total denial of both his mental illness and signs of his physical illness.
In January 2011, he began to bleed uncontrollably from his mouth. Confused and worried, he walked into an emergency room and asked if the medical staff could pull his tooth because he was sure a bad tooth was causing the lump on his neck. They called me but when I got there, he said: “If you tell them I am bipolar, I’m walking out.”
Joe was diagnosed with stage IV cancer. Surgery was not an option. He was 51. His prognosis — two years with aggressive treatment. He agreed to undergo treatment, but a few weeks later a hospice nurse became alarmed when she heard him talking about how unfair it was that I was going to live and he was going to die. She called the police who were afraid that he might harm me or himself. They took him to the ER and he was admitted to a psychiatric ward all while I was at work. He didn’t have any money, and ID or any keys on him. The cancer treatment got placed on hold.
A few days later, I got a call from a nurse who said they were discharging him. I pleaded with the nurse to let him stay longer because he still wasn’t stable. I explained that Joe had a history of not taking the bipolar medication and I was afraid he would stop again as soon as he returned home. In desperation, I told her that I was at work and wouldn’t pick him up if they tried to discharge him.
It was late when I got home that night and I was exhausted. I was getting settled when I heard a noise outside. It was late so I put the light on and discovered Joe crawling up the steps of our back deck. The hospital put him in a cab. paid his one-way fare home and hadn’t told me. He couldn’t get into our house because he didn’t have any keys. He explained that he had leaned over the side of our pool to retrieve a raft so he could make a bed. He didn’t want any neighbors to see him, fearing he would be returned to the hospital, so he dragged the raft under the deck. For a pillow, he used the bag of his dirty laundry from the hospital. He had no access to a bathroom for hours. He had no food or water all day. He told me through his tears, “I just wanted to be home.” At that moment, I promised Joe he never had to leave our home again — no more hospitals.
Joe was so thin and frail — the cancer was growing and a tumor had broken through his skin on his neck and was now exposed. It was difficult for him to breathe. I was upset. They had taken Joe when they thought he might be dangerous and put him in the hospital and then sent him home when he was clearly sick without any concern about what would happen to him. If that doesn’t show how inconsistent and utterly ridiculous the system is– I don’t know what it would take. After I called to complain the next morning, a nurse told me, “Don’t antagonize him!”
I felt hopeless. There were many heartbreaking days the past eight years, but this was the most heartbreaking of all. I cried myself to sleep that night and heard Joe crying from his room next to mine.
I completely lost faith in the way our mental health system cares for someone so ill. I was caring for him alone while trying to work a full-time job. I was overwhelmed. Over the course of the next several weeks, while his physical condition weakened, I asked him if he would try the medication the doctors prescribed for his bipolar and was surprised when he agreed.
And then after a few weeks something amazing happened — the old Joe began to return. He was literally transformed by the medication. For three months I had my Joe. He died at home from cancer.
The cause of death were complications caused by his cancer. That’s what everyone said, but I knew better. It was his mental illness. His denial of reality was part of his mental illness and it was as much his untreated bipolar disorder as it was the cancer that killed him.
I am speaking out today because individuals with mental illness and their families need help. It is hard to believe what happened to my family, but it did happen and I know it is happening to other families — more than we are willing to admit. Families caring for a loved one who has a severe mental illness need help and support. The role of caregiver is so under-recognized in our society, especially while caring for a loved one with a severe mental illness. It can be a frustrating, lonely and isolating experience. It was for me.
Whether it’s due to pride, stigma or just plain disbelief by other family members, many caregivers find lack of support not only within their own families, but also in a flawed, disjointed mental health system, which at times cares more about protecting someone’s civil rights — to the point where it does more harm than good. Many times, parents and other caregivers are treated as adversaries instead of part of the support team.
I was fortunate to have a great circle of friends around me, constantly providing love, support and a sympathetic ear. But I would have greatly benefited from attending a support group for people who have gone through some of the same things my family was going through. I honestly didn’t know such groups existed. I would highly recommend that caregivers of mentally ill individuals join a local support group, learn as much about the disease as they can, familiarize themselves with the laws pertaining to mental health issues, especially the involuntary commitment laws and, most importantly, have a plan in place in case an emergency occurs and crisis intervention is needed.
Had I done all these things, this story may have had a different ending, one with far less pain for Joe, myself and my family.
Kathleen Maloney is writing a book called Twice Lost detailing her experiences. She can be reached at firstname.lastname@example.org