During the summer of 2016, I sat in my office and realized that I needed to make a hard decision: do I leave Jon, or do I stay? Leaving him would mean that I would be able to pursue my own path, and I’d exit the caregiver role that had taken up so much of my emotional energy for the past twenty-two years. I was worn out. Staying in the marriage would mean that I’d continue to do what I’d been doing for most of our relationship.
Leaving him when he was not able to stand on his own yet could mean suicide. He was doing Dialectical Behavioral Therapy. DBT was created from Marsha Linehan’s work. I’m thankful that she had the insight to bring this forward for the mental health community. For Jon, it was a slow process, and one that would take many more years. The therapist needed to help him resolve family-of-origin issues, as well as provide him some life skills that would help during times of crisis. In the long run, I’d benefit from what he was doing.
What no one knew in July of 2016 was that in six weeks the horror of suicide would confront me. He was entering into another psychotic episode, and this was the one thing that would cause him to end his life. He wore a mask of fear around facing another psychotic episode and recovering from the damage it would cause. He had disclosed to me that if he felt himself moving in this direction, he would end his life. Not one of us who might have seen it coming saw things for what they were.
As I think back, compassion fatigue had burrowed deep into my mind. I was physically and mentally exhausted.
Where was I? If he told me to gather up the objects that would enable him to end his life, I would go through the house and do so. I would store them away until he felt safe from himself. When he stressed and had a crisis, I talked him down from it. Sometimes it took hours to get him to a point where he would swallow an extra dose of medication. Then I’d need to make sure he slept. When he overspent, I could no longer fight it. I had no energy to go up against the crazy. Everything combined took its toll on me. I felt like I was abused, and there were no bruises to show for the abuse I was enduring. If he felt something, I felt is as well. I was becoming nuts in my own way. How could I not feel for him? He was suffering in ways that cut deep into his soul. I couldn’t sense this in its fullness as it happened. Our humanity leads us to compassion for suffering of this magnitude. Compassion calls us to act when we can’t empathize with something that we haven’t experienced. I will never know what it is like to feel the level of darkness, dysfunction, and despair that he felt on a daily basis.
I asked questions to understand. It is one of the reasons I’ve placed his writing on this site in the form he constructed his blog Jon’s Hideaway. Jon struggled with sharing the little he did share. I’m glad he was courageous.
There were the comments, and the assumptions. I was told that I wasn’t putting enough into the marriage! Holy hell, I was dying inside!
Being raised in a patriarchy and a high-demand religion wasn’t helping me in any way whatsoever. I raged inside as there was no place for me to turn. Had I gone full disclosure to my family, I would have been told to divorce him. I loved him, and I couldn’t see a path that would have served us both well. What I needed was mental and emotional relief from the situation. When you are dealing with compassion fatigue, you can’t understand the pulling apart of your own soul that is taking place at the time. The fatigue blocks it out.
The Needs of Caregivers
What do caretakers who deal with the bipolar population need? First, and above everything else, we need safe places that allow us to disclose our needs. We need a supportive friend who can listen and keep us objective, and also show empathy. We need someone to spell us off so that we can get out and get away from the stress when the stressful times increase. We need others to come in and help with housework or meals when our energy is low.
One of the huge issues I had with Jon was around keeping his dignity intact. Jon was a brilliant man. Mental illness robs people of dignity. As his caregiver, I fought to shelter him from people who didn’t understand. He was well aware of how mental illness is viewed. We talked about it often.
How do you explain to people that bipolar isn’t the person going creatively mad? Most of what bipolar brings into a person’s life is darkness, dysfunction, days and nights of sleeping, and not being able to care for yourself. Showering can be put off for days. Brushing teeth might not happen, and if a person is alone, they might not eat, or they might overeat.
During the time I was out of the home for a vision rehab program, I had people set up to deal with the crisis end of things. I didn’t have people set up to check in on him. At the end of one of my four days away from him, I walked in on a scene that scared me. He hadn’t fed himself, showered, taken out the trash for pick up, and had I not come home it would have become worse. I called the psychiatrist and got him in. Then, I took a week off from the program in order to stabilize things at home. I wasn’t worried about him attempting suicide: he didn’t have that kind of energy. I needed more help than I had.
There is also the obsessive-compulsive factor that surrounds bipolar. Not all bipolars are also diagnosed with obsessive-compulsive disorder (OCD); however, there are components of the disorder that show up for many people. For Jon it was being able to make his guitar. He needed to have the perfect neck for him to play. So, he never really played his guitar: he researched, purchased tools to “fix” it, and then never got to fixing it. There was also the thought that he would record his own music. So, he began to build his own recording studio. Trying to reason with him became a war zone. I stopped fighting with him. I didn’t want the war to resurface in our relationship.
Then the issue of me cleaning our house came up, and I wasn’t allowed to clean the house because I couldn’t see it all well enough to do the task right. He would put it off, and every once in a few months would take several hours and clean. I sunk further into despair. When we moved out of our home due to bankruptcy, and people came to help us move, I was the one blamed for the messy house. Once again, no one asked the why question, and it wasn’t safe to explain it all. As my mother used to say, “Assuming make an ass out of you and me.”
One thing led to another, and by the time he took his own life, I was beyond worn out: I was numb.
While I was able to understand on some level what the marriage had done to me, I wasn’t able to understand it in its completeness. It would take years for that to happen. It has taken over eighty-four months to write this post. It isn’t that I was unaware of compassion fatigue; it is about the fact that grief work involves sifting through so many aspects of life. For me to fully process this has taken almost eighty-five months. For some of you it will happen much sooner in the process.
When I look into the mirror, I see a face that isn’t stressed, a woman who can smile, and a life that is taking me along paths that I never imagined I’d walk. It is enough.