My husband Joe and I were blessed to enjoy 18 wonderful years together before he became ill. We shared a beautiful daughter and there was love, laughter, joy, hard work and so many plans for our future. However, like most families who have a loved one stricken with a serious illness, we began to speak in terms of “before Joe was ill” and “after Joe became ill.”
On Christmas Day 2003, two weeks after Joe was laid off from the company where he had worked for 20 years, he fell to the floor of our family room and had a psychotic breakdown. We spent the next day in the emergency room, where he was given a full medical evaluation. After hearing he recently went through a traumatic experience, the doctor told us he was depressed. Joe knew it was more serious and he tried to tell the doctor so. As it turned out, Joe was right.
A few days after the emergency room visit, I drove him to another doctor’s appointment. While stopped at a red light, he looked over at me and he began to gently pat my shoulder telling me, “You’re a nice girl, you’re a nice girl.” I remained frozen even when the light changed as I told him, “Joe, I’m your wife.” I said, “You’re my husband.” And then he pushed himself away from me in fear and said, “Oh no, your husband is gone and he is never coming back. Do you understand?” he said, “He is never coming back.”
The doctor asked him that day if he suffered from depression or bipolar and we both answered, “No.” We were both wrong. When we finally saw the psychiatrist, six weeks later, he diagnosed Joe with Bipolar II disorder. Because it is so often misdiagnosed as depression, patients diagnosed with it for the first time are often wrongly treated with antidepressants alone, which can make the symptoms worse. In Joe’s case, the Paxil did make his condition worse. A lot worse.
So, in addition to the anti-depressant, the psychiatrist also prescribed a mood stabilizer. We stopped at the pharmacy to fill the prescription on the way home. I was so relieved and had hoped that the medication would help Joe. But he said he didn’t have bipolar and he just wanted to be a productive person and continue working. He put the bottles of pills in a drawer and refused to take them.
After a few weeks, he seemed a little better. I was relieved when he said he put that episode behind him and he never wanted to discuss it again. Although Joe eventually found another job and went back to work, without ongoing management of his illness his condition worsened.
People with Bipolar I experience mania consisting of distinct periods of elevated, expansive or irritable mood. With Bipolar II, they experience hypomania, a mild to moderate level of mania that is a generally less destructive state than mania. Hypomania may feel good to the person who experiences it, and it sometimes may be associated with good functioning and enhanced productivity. That’s how Joe was able to get another job and go back to work in 2004.
But it is very common for a person with Bipolar II to deny that anything is wrong. So, the situation was never dealt with. From 2003 to 2009, Joe never saw another doctor for his bipolar. Without treatment, his condition worsened.
For the next six years, his untreated bipolar controlled our lives. It was one crisis after another, and our family life became unsettled and unpredictable. While Joe was never physically abusive to me nor did he self-medicate, as do some people with untreated bipolar, he became reckless in other ways. He became financially irresponsible and even purchased an expensive boat that our family could not afford.
Once an expert handyman who took pride in his home, he now seemed unwilling to fix anything, and became furious if I tried. He became irritable and less connected to his family and friends. He had always been an animal lover and now had no interest in them. It was heartbreaking to see him screaming at our beloved cat. I grew increasingly protective of our animals when he would call me at work threatening to leave the doors open to let them run away. The animals became a way for him to torment me.
He began to taunt me with notes, which he hung around our kitchen, sometimes 20 a day. I tried to get up extra early in the morning to collect them all before our daughter woke up to find them. In the notes, he called me offensive names, which he had never done before.
People who have not lived through an ordeal such as my family experienced do not understand how this could happen, how the situation was never dealt with. How could you let a loved one with a severe mental illness not get treatment?
The sad fact 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 in 2011, when he was diagnosed with Stage IV cancer, he refused to believe that. His denial of reality was part of his illness. And that’s why he died. It was as much the bipolar as it was the cancer that killed him. It is hard to believe this happened, but it did happen and I know it is happening to other families — more than we are willing to admit.
Individuals with mental illness need help. Families caring for a loved one who has a severe mental illness need help and support also. 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. 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.
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.
In 2009, a large lump appeared on Joe’s neck, but he feared going to doctors now and wouldn’t have the lump examined. I tried everything to get him to a doctor, but he would not go. In time, he began going into the bathroom at night with a box cutter, trying to cut the lump off. He would then bandage his neck and go to work the next day.
One day in January 2011, he began to bleed uncontrollably from his mouth, and he walked into an emergency room asking if they could pull his tooth because he was sure a bad tooth was causing the lump on his neck. After I arrived at the hospital that day, he quickly told me, “If you tell them I am bipolar, I’m walking out.”
Later that week, Joe was diagnosed with stage IV cancer. Surgery was not an option. He was 51. His prognosis — two years with aggressive treatment. He began treatment, but a few weeks later he had another breakdown and ended up in a psychiatric ward. The cancer treatment was placed on hold.
A few days later, he was released from the psychiatric ward — irresponsibly. I didn’t think he was ready to come home and I told a woman from the hospital many times. I told her Joe had a history of not taking the bipolar medication and I was afraid he would stop again when he returned home. I also said I was at work and was unable to pick him up. I was furious when I later learned that the hospital put him in a cab and paid his one-way fare home.
Later that night, not knowing Joe had been brought home, I heard a noise on our deck. I put the light on to find Joe crawling up the steps of our back deck. He 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.
Joe said 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. I felt hopeless and I began to wonder if he would receive better care if he were in prison.
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.
Based on my experience, I completely lost faith in the way our mental health system cares for someone so ill. While he began to receive palliative care, I was caring for him alone while working 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 — he was transformed and the old Joe began to return.
Three months later, Joe died at home from cancer.
Kathleen Maloney is an administrative assistant at the Asbury Park Press: firstname.lastname@example.org; 732-897-4500. She is working on a book, “Twice Lost,” detailing her experiences.