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Posts tagged ‘Compassion fatigue’

Aug 20

Reflections, Part 7

The Deconstruction of a Marriage

Somewhere in my reading on grief, I read that in order to do honor to myself and to the relationship, I needed to deconstruct it before I could even consider moving forward and on to another relationship. This made complete sense to me.

Jon’s suicide came out of nowhere, even though I understood suicide to be a reality of being married to someone who had a diagnosis of bipolar 1.

With twenty-two years behind me, I’d been through it, raged over it in a raw form, wound up in my rose room, and found unstable peace.

Ultimately, if I was to do the honest work of moving forward, I had to take my marriage apart. I was about to make the mistake that so many people make: not fully examining the relationship before moving forward. How does someone look under the hood in this situation? You start with the facts that you know about, and then, as those facts are either confirmed of disconfirmed, you move forward with new information. You are boring through the mountain again, but this time the rock of the mountain isn’t placed on the conveyor belt and sent out to be used someplace else. This time you are examining it for content.

What I knew at the beginning was that, overall, we were friends first, and I had married a friend who would engage me in conversations that could go well into the early hours of the morning. Jon preferred sour candy, and I thrived on the sweet stuff of life. We were both adventurous and would try things, either doing them again or deciding against a repeat. He loved his pumpkin pie, and for me it was lemon meringue. It was pie, and we’d have pie instead of cake on birthdays, and it was a good thing.

I understood that he tried to cope with the bipolar as best he could and struggled with doing so in a dignified manner. I knew I was committed to caring for him as best I could, and that meant clearing the house of objects that could be used as weapons on the self. This was hard, and scary, and went along with some sleepless nights. I developed compassion fatigue. I don’t think you can understand how bad it is inside until you’re on the outside of the situation. I recall telling my mother before her death what it was really like. She asked why I hadn’t told her, and I replied that all you would have wanted me to do was to get out. I didn’t like the volatility that bipolar can bring, and yet, I knew leaving would need to be carefully orchestrated. I had sat with this thought and decision for some time. I had considered divorcing him that summer, but I made the choice to stay for the time being. I didn’t know his mind was moving towards a psychotic break that would decide things for him. He’d told me he would not endure that place again.

I came to understand that, while the marriage was not about his bipolar disorder, the mood swings, with their verbal abuse, were a part of the marriage.

In 2010 I made the decision to call him out on the anger and aggression he was showing towards me. Once he could hear it, he was able to work on it and commit to not behaving in that way anymore, and he didn’t go there again. When he began the DBT (dialectical behavior therapy) process, which includes acceptance for one’s actions, things began to level out in new ways.

What was my part in the marriage? As mentioned previously in the piece on exiting the Mormon Church, I was battling some demons of my own.

I needed to understand how everything I was dealing with affected the marriage. Being raised to be a good Mormon girl and woman had a great deal to do with a lot of who I was in the marriage. How did I enter into this relationship?

There was a great deal of suppression involved in the process.

In the first grade, it was the girl who had the pretty white and pink dress and the jump rope. She wore cute little Mary Jane shoes. I didn’t have Mary Janes, and I wanted some. They were so feminine. I thought it was normal to think that way. As an adolescent I couldn’t understand what all the fuss was about boys. I glossed over it and, in doing so, sent it away to not be thought of for years.

Because of my disability and experience at church, I had written off the possibility of marriage.

I met Jon when he came to do a house call on my computer. A friendship developed, and after four years we married.

Being raised Mormon meant that I was supposed to grow up and marry a nice Mormon man. I’d hit the jackpot! I’d married a brilliant man who could have powered the world on a paper clip. It was his out-of-the-box thinking that I loved most about Jon, and he liked that I could go to that place as well.

Still, there was this thing hanging around, and it wasn’t spoken about, and I couldn’t utter the words while he was alive. I don’t get men. I’m supposed to understand men, and I’m supposed to feel attracted to them. I don’t. After his death, the guilt that I felt slowly surfaced. It took several years and didn’t surface in its full ugly form until I’d left the Mormon Church and moved on.

I felt guilty for marrying him, guilty for the sex that really didn’t work well. While thinking all of this, I was also well aware that this was not a one-sided issue. Bipolar disorders affect relationships, and in deconstructing all of this, I came to understand that I was a participant, and there was no blame to be had: just understanding. Blame and guilt are so often miscued in relationships. Looking at this with my own therapist caused me to rethink my thoughts and feelings around having married Jon. In safety, I could admit, actually, that there was no way around this: I like women.

Aug 6

Reflections, Part 5

What I Wore

If there is one thing my sister Beth and I agreed on, it was that Joyce got all the cute clothes. We took the issue to my mother when we were adults, and her response was that Joyce had the personality for cute and bold, and we were pretty and feminine with our clothes types, and so, while Beth could sew and make herself originals, I got pretty from my mother.

To be fair to my mother, she was right. Joyce got the doggie dress that Beth and I wouldn’t have known what to do with. Joyce, on the other hand, would react when someone said that her doggie dress was cute, and then she’d extend the dress to its fullness that revealed a wiener dog. She took delight in the surprise. No, her two older sisters would have failed miserably with that task. Mom just got clothes, and she understood that her two oldest daughters didn’t have the personalities for what Joyce could pull off.  

My mother’s side of the family was filled with women who could sew for themselves, and they all sat at machines and sewed their clothes. But cousin Gwen said it best: “Your mother sews circles around all of us.” She did. While my aunt could create tiny things with personality, my mother created what I came to call dresses with personality, or “dressenality.” She sewed lasting creations that would get stored in memory. I knew when I got it and when I first wore it, and it became hard to grow out of clothes. Well, that’s one good thing about adulthood. Unless I grow, I can wear it for… forever.

A trip to the fabric store was all about the right pattern and the right fabric to go with the wonderful new dress. It worked like this: first look at all the pattern books, find what I wanted, and then, and only then, could I move to the fabric. Rows, and rows of wonderful fabric. If I wanted stripes or pleats in the dress, the dress requirements were much different. Florals? Would it look right? Mom always understood. Sometimes I’d buy fabric and wait for the right dress or top to show itself.  

In first grade, it was the fall colors of the flowers, and the yellow trim, the pleated skirt, and the joy that dress brought me. It was mine, and I loved wearing it. When I was seven, Beth wanted to make the dress. Mom let her. It was a purple twirly dress with long sleeves and a Peter Pan collar. It also had a sash that tied into an incredible bow. I wore it for a “daddy–daughter” night. I also wore it for my school picture that year. Growing out of the purple dress was a sad thing.

As a teen it was the pantsuit. Dark pink pants, a seersucker top that was multicolored, and white slingback shoes that I purchased while working for my father. Working meant I could buy clothes, and I did buy fabric. Why wear what others might be wearing?

When I wasn’t living at home, I’d buy clothes from specialty shops that catered to petite-sized women. They were nice, and I had my sentimental favorite. But, once again, it was what my mother would create for me that made me happy. It was the gift of a skirt and top. The print was on this electric blue background, and the flowers were rich reds, greens, yellows, and purples. The neckline was scalloped, and I had a red belt to dress it up. It was Jon’s favorite. When we moved to Germany, and then to The Netherlands, I thought the sewing would stop. It didn’t. On a home visit, I went shopping at Vivian’s Fabrics. She had to clean out and send it all off to loving homes. Her grandchildren were the recipients of much of the stash. So was I. The last vestiges of my mother: a blue dress that is pure style. I love it. Hopefully, I’ll have it forever. I wear it on special occasions.

With all the happy memories of clothes, how I got them, and where I wore them, I had to tell myself that the one that hurt I could part with.

August 28, 2016. It was the day that turned out to be the worst day of my life. What I wore is burned into my memory. After I showered, I chose to put on a skirt with a black, brown, and white print, and a light tan tank top. Because of the minor stroke I’d had in 2014, there we days when wearing anything with a sleeve wasn’t possible. This was one of those days. It was hot and humid outside.

I wore this as I walked down the stairs to have the final conversation with Jon. I wore this as I binged on Law and Order, and I wore this on that fateful walk into my kitchen—the place I never made it to. I greeted the police in this outfit. I wore it to phone the two sides of the family.

The memory of what I wore on this awful day was pounding in my mind. I was already dealing with trauma: this was the cherry on top. An outfit of a skirt and top had been put into the trauma caldron. NO, not clothes. Gail’s rule number one about clothes is that they are sacred and can’t be damaged. This skirt and top had become tainted.

I tried to wear them separately and together, and even though I wanted to keep them, I finally knew that I’d have to send them off to a home where they could be loved.

When I think back on this series of events now, I realize that it is more complex than just parting with clothes. This is about how we handle parting with something, and also recognizing that there is damage to our souls, and coming to terms with setting it free. This is about doing the deep grief work that is often overlooked in the process of getting to the new place. This is the place where new outcomes and life paths become real.

Jon and I were together for twenty-two years and married for eighteen of them. When you’re with someone that long, it is vital to sort it all out.

At the beginning of the process, all I thought about was that I would never marry again. It just hurt to think about doing that or being in another marriage. By about year three or four, I realized that I needed to take the relationship apart to examine it with no restrictions on what I would not look at. I remember being here at my desk and seeing the sun hit the window on the other side of the street. I started to think that if I didn’t take it all apart, I wouldn’t be able to move forward in a healthy way. Like the skirt outfit and dress that had to go (I sent the pretty dress I wore to his cremation to the secondhand place as well), I needed to be honest about my marriage. I needed to give it a real look under the microscope.

The first big thing I had to come to terms with was that I was dealing with compassion fatigue. While I understood this earlier in the process, I had not allowed myself to step back, pull it out, and dissect it for what it was: trauma. If I ever got to a point in time where I’d want to explore something new, this was a biggie on the road to figuring out a part of my marriage that I needed to see clearly.

The fact of the matter is that many grief journeys omit this step. This isn’t about speaking ill of the dead—though some of that might need to happen. It is about giving the relationship an honest critique, and understanding what made it good, and where the bad points were.

Breakups happen in marriages and long-term friendships. We’d be wise to look under the hood to see where we went right and where we went wrong. In most situations there are always two sides. Being able to look at something and accept the responsibility for our part of the “wrong” is difficult and painful. It is brutal work that needs to happen, and the payoff is worth the pain we go through to get there. This work is not for wimps. Ultimately, when we get through the hard stuff, it brings clarity to everything. Examination also means that we won’t leap into another relationship before we’ve done whatever work we need to do on ourselves to fix what we can.

I think that many people confuse grieving with crying many tears and being ready to move on. NO, the tears and the mess are only a part of the process.

What if the grief process is also a call for a life redo? What if the life we build after a death or loss of a partnership is one that takes us on a new path? What if we’re on a life journey, and this is just one significant stop in the process?

Jan 14

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Editor’s Pick: Eighty-Four Months

When mental illness takes its toll on individuals who are afflicted, caregivers can be easily overlooked or even forgotten. I’ve chosen this piece, which considers caregivers’ needs, originally posted in September 2023, as my Editor’s Pick for the week.

-Claudia

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.

Looking Back

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.

What Else?

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.

Aftermath

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.

Jun 25

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Not for Wimps

Therapists have therapists. What is to be said? Wise therapists have some form of professional that they can turn to for their own needs. Let’s call it professional self-care of the soul.

Our souls need to be able to be heard and assured. We need to explore our interactions and pamper ourselves. It is also good professional ethics, as it keeps us from making huge mistakes.

I’ve spent time thinking about the care and watering of our hearts and souls over this past week. At the end of a particularly difficult session, my therapist made it a point to ask me about what I’d be doing the rest of the day. Our conversation was different because of the work we both do. The result of my process that day was that I became aware of how long it took to calm my heart and let the results of the session work inside of me.

What can we do to exercise self-care in times of need? This seems to be something that people need to learn, and so I’m going to list things.

Free Stuff

I’m suggesting free things because self-care shouldn’t stress you out. If money is an issue, trying to pay for something will make it counterproductive.

I’m not suggesting things to pay for because you’re going to have your own personal favorites (mine is sushi).

The list below is meant to trigger ideas:

  • Listen to music
  • Enjoy a garden
  • Binge-watch an old favorite show
  • Watch your favorite movie series
  • Read an old favorite book
  • Stay in bed longer, but get up and take the day slower if needed
  • Observe nature from where you are
  • Find a pair of shoes to dress up your feet
  • Do something fun with a scarf in your hair, or with what you’re wearing

Why Do We Need to Care for Ourselves?

Why wouldn’t we want to show ourselves the compassion that we show to others? Self-care enables us to know our bodies and minds better. Self-care is also an important component of a balanced life. I posted about a holiday that I took to Wales, and along with it the hitches that come with my travel experience. When friends found out that I hadn’t done anything for myself in years, the push was on to get me to holidays. 

The first Saturday, I crashed on the comfiest lounge I’d sat on. The exhaustion of ten years of caretaking, and not feeding my spiritual, emotional, and social needs, sent me into a sleepy state of being. I didn’t understand the depths of needing to get away from it all. I’d done too many “staycations” and not enough real holidays. I returned replenished and ready for a new chapter in my life.

Self-care is about allowing ourselves to claim our inner strength and acknowledge that we need to feed all of the self. Self-care is about being brave. Self-care is not for wimps. Another way I practice self-care is to keep a lovely supply of scented candles in the home. I’m presently burning three in different rooms of the house.

Candles allow me to imagine the sea and smell different types of air: the pumpkin of fall and the fresh breezes of the spring season. It’s about the candles and the scent. They are a spiritual practice that I love.

Feb 6

After the Raging Storm

The wind blows, and I’m inside, sheltered from its intensity. I live in a windy place where storms travel across the North Sea and greet me. Sometimes the raging winds howl outside, and I wonder if my windows will break to admit the destruction into this home. At other times it is a softer wind that I hear, and I can look outside to see the umbrella cover being moved: that is how I know there is wind outside.

Beyond the walls of my home, the storms can rage. There are times that mental storms rage for people, and the fix or cure is to talk them out. Sometimes you need a professional to do the listening, and to provide the safety of shelter from the storm.

Grief can rage with an intensity, and at the same time can be the quiet storm that calls us to a peaceful reflection. I’ve experienced both sides of the storm. I’ve known the intensity of the wind as I feel it might break through all of me and leave me splattered on the ground.

I remember a night early on in the process where the storm raged outside of my home, and inside it brought up the question: How will I survive this alone? I raged at myself, at Jon, and at God. The rage wasn’t about how this could happen to me. The rage was about the unknown I was facing. At the time, it was November, and his death had been in late August. I was waking up to what was. I was raging at myself because I was now alone. A disabled person who had relaxed into having another person present to help when I needed a pair of eyes that worked well. Now he was gone and I thought to myself that I’d been foolish to relax my independence. I’d become lazy in relying on him. NO MORE.

I raged at Jon for exiting and honoring his own need to not live through another psychotic episode that would take years to walk out from. Yet, in that rage, I knew the trauma that he had chosen to avoid. It would have been too much for him, and too much to ask me to hold as I cared for him. At the end of his life, I was suffering from compassion fatigue. I wasn’t in a good place.

I was raging at God because I could safely let God hold my rage. This wasn’t about God. God didn’t do anything to me or to Jon. That is not a God I could ever believe in. I just needed to rage on that stormy night. It was enough. When the tears faded out and the body stopped shaking, I was able to rest in the bed we had shared. It was a beginning of closing out the old and entering a new space where that bed would be replaced for something that was all mine.

The bedroom went from a milk-chocolate brown to an ice blue.

I purchased the new bed on a stormy day. That night, sirens blared at accidents that had happened. The snow stayed for days, and I hunkered down as the powerful wind howled beyond my office, rattling the windows, and I wondered if I’d survive it all. Somewhere out there, the storm I was surviving was raging in someone’s head. By then, the head storm of that November night in 2016 had passed, and I understood that I could do what I had to do if I was smart about it. Jon’s storm had ended, and my storm had begun.

We’d talked about how his suicide would hurt me, and others. We’d talked about it in the very room I slept in. He knew what it would do to those left behind. I couldn’t hold it against him, because to stay would have meant suffering mental terror that no one should suffer. Psychosis is traumatic.

When you are in the storm or trauma, you can’t look to the edge and see much hope. This is why grief can be the unwelcome storm that rages out of control. We have no control over any of it. We can manage some of our behavior as we gain experience in meeting the winds. We are not in a place to stop any of it. Storms, by their nature, tend to blow themselves out when they finally get to a point of dying down.

Grief by its own nature will calm itself when we allow our bodies and souls to do the work that must be done. We navigate harsh waters; we travel underground, and we bore through mountains. In the end, we stand on new ground.

The rage inside and outside has stopped. We question how it happened, and we can conclude that the process of it all, while useful to understand, isn’t needful to focus on. In many ways it is enough to respect the wind for its power to carry us to a new place in life where we come to believe that we can face the other storms that come our way.

Oct 9

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Fluffy Towels

Memories flooded my mind this past weekend. My mother, my brother, and my sister all came up for me, and then the towels, and Jon.

Oh, those towels! I think back to when we purchased them. We needed to replace towels, and I wanted fluffy, warm towels that would feel good after leaving the heat of the shower. We disagreed. After his runaway spending, he couldn’t justify fluffy towels in his mind. I relented, and we got towels that I didn’t like. There would be no argument that way, and keeping the peace was important for my sanity. 

I sit here now crying over towels and the wreckage of bipolar in my life, and in our marriage. Crazy what brings one to tears, and even crazier that of all the things that could bring tears to my eyes, it is towels, and the memories, that surface.

It’s the non-logic of bipolar that traps the partner into the crazy. You don’t see it coming, and when you’re in it, you can’t figure out how it is that you got to this place. Seven years without Jon has enabled me to autopsy the “how” it happened.

We were in his car driving home from my work. Driving south on 680 headed homeward, and to this day I can’t remember what I said that triggered the rage. Whatever it was, he went off, and to me, having never witnessed that type of anger, I didn’t get that it was the bipolar talking. What had I said? I was somehow guilty of something, and I had to respond with an answer that would pacify him. He had me right where the dysfunctional mind wanted me. I’d been sucked into something I didn’t understand. His demand for an answer didn’t make sense. In that state of mind, when he was in that place, nothing made sense. Somehow, to him, things made sense, and so he’d demand answers.

I was raised with love, and gentleness, and had not experienced this type of anger or seen it in a relationship. Here it was. I was faced with something I didn’t want, and didn’t understand. This brilliant guy was showing me a side of himself that didn’t make sense. It was borderline narcissism, and it was manipulative rage.

I was years away from understanding what I needed to do in this situation. My response was to attempt to comfort him. What I should have done was leave the rage and let him work it out for himself. I was trapped in a car, and I couldn’t leave easily. It would take his psychiatrist telling me to walk away, and that was over a decade away.

That session was the most helpful session we had with the psychiatrist. This was a man who really cared not only about Jon—he cared about me. He turned to Jon and asked him if my leaving during a rage would be helpful, and Jon, much to my surprise, said that it would be very helpful. For me, those words lifted a burden, and a layer of care. I was already suffering from compassion fatigue, and here was someone telling me to let go! 

This wasn’t the first time this man would tell me to let go. In November of 2011, he took the time to talk with me in length about fully letting go and trusting that Jon would do what Jon would do, and that I needed to let the process unfold. Whether he chose life or death, it wasn’t my call, and I couldn’t do one thing to make it right.

In December of 2011, we walked outside to a waiting taxi, and I was off on a fifteen-month adventure at a rehab center where I learned some skills that enabled me to do more for myself as a visually impaired person. This was also a time of contemplation around the issue of being able to let go, and to let Jon live or not live his life.

I didn’t go to the Loo Erf without a plan for him. I had people that were willing to help and, with that, I could leave Jon at home.

I understand why people leave their partners when there are mental health issues. For those of us who stay, it is both a choice and a hope that things can get better. For Jon, that hope came with a two-year Dialectal Behavior Therapy (DBT) program. It required him to change his psychiatrist and take on a psychologist. DBT teaches skills, and for Jon, it moved him closer to an understanding of how to escape the crazy of his behavior. This switch did not occur until I was done with my vision rehab in Apeldoorn. Slowly, the burden of caretaking was lifted. It was helpful.

What was most helpful was Jon realizing how the rages had hurt me. His promise that he would not rage again was something that he kept until the 28th of August, 2016. With a psychotic episode looming near, there was one last burst of rage before he ended it. This was not the rage that I’d experienced that first night; it was the rage of escape, and ending. It is a rage that hurt, and it will stay with me forever. His three-minute outburst would justify his doing what he did in the final moments of our living relationship. It took me to a level of anger I had not allowed myself to feel for him in the twenty-two years I’d known him. I needed to cool down.

I sit here wondering how to conclude this. I think about the three other deaths that have affected me post Jon doing what he did. My mother died after a long life of love and giving to us as young children and adults. My brother died, leaving his wife and adult children. His death caused me to ask why he wouldn’t care for himself better. Why? My sister’s life came to an end after a courageous battle with liver cancer.

Looking back on all of this, I shake my head in wonder, but not in disbelief. I’ve lived through it all: all seven years of it.

Yesterday I sat at the computer and realized that putting it off wouldn’t fix the towel issue. What did I want? Fluffy towels! I needed three sets.

Looking at the choices I had, and the price I’d need to pay to replace the old, worn towels, I thought about what I wanted. I’ll take a yellow set, a blue set, and a light pink set. In the cart, to the checkout, confirm the order with the bank, and the confirmation mail hit my mailbox.

Towels: and I’m crying again.

Sep 19

Eighty-Four Months

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.

Looking Back

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.

What Else?

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.

Aftermath

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.