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Posts tagged ‘Compassion fatigue’

Jan 14

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

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.