Caregivers and PTSD (Trigger Warning)

I have Post Traumatic Stress disorder. It in some ways rules out how I can live my life. Sometimes I cannot bathe because of it, sometimes I cannot eat, sometimes I cannot move. sometimes I can only scream. I fear the quiet after a panic attack, and I still am unable to just cry. Somehow now I can cry over things like William needing a new home but I cannot cry over the fear and panic associated with the triggers of my PTSD. I revert to that child who learned so long ago that if you cry that means you will die. Even writing about this I am triggered. Truthfully I am writing this because I just had several triggers.

I have had to deal with my PTSD everyday because I have a caregiver. My safest way to not have any PTSD triggers is to be utterly alone. Not lonely, that can be triggering, but alone. Jo, my new caregiver, had her second day today, I was squirrely before she came in, that urge to run, flee, hide, or attack and drive her off rearing up. This is normal with new people. I told her I was having trouble and there was no odd stare, none of that “Okay she said she is having a triggering day and mentioned her PTSD what was that again?”

This is new. We attacked my coat closet today, this is one of the places where K the abusive caregiver stuffed a bunch of things she was meant to either put somewhere else or get rid of, or things I wanted there and some of these things were HIS. In this closet we found a cadre of abuses, little things, big things. Painful things. I am hurting. My hands are trying to curl into fists and there is physical pain to write that out. It is somatic pain, and I am pushing on.

The panic hit when she pulled out a comic book. I am a huge comic fan, she knew this with in an hour of working for me, the batman paraphenelia, the radio show on the feed, the statuettes, and of course the actual comic books all are a dead give away. On top of that I talked about them with her. She likes Batman too, and I will get to see the third batman movie when it comes out next year or so on opening day. We made the plan. Still, she saw me freeze, then I babbled incoherently, trying to explain what was happening. I managed to say, “Hide that I can’t see that.” She did. She did not ask what happened but just stopped for a minute. She didn’t ask if I was okay, because that pisses me off and I told her during the interview that is a bad idea. It’s a secondary trigger. She just waited. “I need us to skip this box for a minute, I am fighting off panic.”

Her response wasn’t to rush me, it wasn’t to ignore me, it wasn’t to tell me I was stupid, nor was it a misunderstanding of what I was trying to say. Her response was to say, “Okay.” She put the box aside, and we did something else while I contained myself. We go back to it, this time I am ready, but still it’s bad. We come across one of my wood working pieces that I was told was lost forever, lies are a trigger. I held it tightly and used it as a visual shield against the growing pile of triggers. I didn’t have to see them, and she was patient. A task that when tried before was either full of failure because of my PTSD or was not done properly hence having to do it all over again… a task that I was certain was impossible? This was done with in an hour. Just one! My living room is spotless, william is passed out in happy sleep with the toys that he lost under the door. I know where the triggers are, and we have already boxed them for proper resell.

I am saving for a new computer, as this system is showing it’s signs of aging. It burns me with fear the idea of being without any outlet, without any ability. Being without a computer isn’t as bad as some of the things I have lost but it allows me freedom. She agreed to help me with the removal of these items, where I can benefit from them financially. This, this was amazing. It won’t be an easy task but she is willing to help me juggle my triggers.

I have denied for a long time how disabling my PTSD is, this was self denial. I worked hard for years to shed the triggers but the last year brought all of them back and added more. Every day I plan around my pain, physical, mental, and emotional. Every day, I must be prepared for panic and terror. Having a caregiver makes this harder because I am not alone, and humans make errors. I do not expect my caregivers to read minds.

Jo was willing to work with me to find a smell that was a trigger. A random smell that doesn’t have clear description, wet, gross, evil. Evil is of course subjective. The smell was in my bamboo plants. The water needed to be changed, so we did this, and now the smell is gone. My food was a trigger today, so we worked to find food I could eat. There were unexpected triggers too but, she just did what I needed her to do.

A caregiver has a hard task without PTSD in the elements that they must deal with. They have to compensate for the body and mind in ways that are difficult. Modern society has added burdens to the caregiver as well, some may have to be tech support, or they may have to deal with money, severe allergies, or even broken wheelchairs. PTSD however is also extremely common among the disabled. I know personally that PTSD by itself can be disabling. Post Traumatic Stress can cause agoraphobia, because how can I go outside when anything could send me plummeting back to the worst moments of my life? How can I get food if eating it can make me remember the worst moments of my life? How can I breathe?

I admire skilled caregivers, and now I have had four caregivers, two rotten PTSD causing caregivers… and two very skilled caregivers. It was difficult to let Annalys find a new job, it was horrible the moment I realized that she could not work with me. I felt panic, I feared reprisals, I feared lonely, I feared the filfth I have endured. It all piled up on my shoulders. Annalys was wonderful but I couldn’t explain to her why we could never open the closet of PTSD Doom, I could never explain why things upset me and that added stress for us both. On through her last day she still set the bar so high that few caregivers could match. Jo manages. Jo even gets some of my nerdiest jokes.

Having change is a PTSD trigger for me, even though I often crave it and crave adventure. I have learned in the past few weeks that being able to say why something is upsetting is a huge part of being able to deal with my PTSD. I never used to need that, but because I am dependant on someone else, I need to explain to them the why so that we can ease the triggers. I suspect this is something others do. Jo knows she will not have any coherency from me on Thanksgiving, and will be serving food then leaving. She knows the why, to a degree. This was part of her interview. Jo has dealt with PTSD before. Her skill surprises me.

I am probably babbling now, but the fog is fading away, the shadows of the past aren’t visible anymore. I am still disoriented but that is mainly the vertigo. I am left to wonder, how do those without caregivers deal with these triggers in their homes? What do you do if there isn’t someone to help you and the pain and fear is still paralyzing? I used to have an answer but the answer does not fit. I also know that some of what I did to ‘deal’ with my issues was actually self abuse.

I am taking more steps on my journey, and they are terrifying. The voices of the thousands of moments, the thousand pains, the thousand little deaths are in my head all screaming. Those cries are the last to go, and maybe this time I can mourn for the little girl I never got to be. At least I can cry on the inside.


  1. I sincerely hope that Jo works out well for you over the long term.

    I’m still at the close doors and keep my head down stage.

  2. I hope so too! I think that this agency is way better than the previous one, given that they have proven it. I still have those days, honestly the shut down stage may never go fully away. Letting a caregiver in is actually a bit contrary to parts of nature, the need to isolate ourselves when in pain is to protect ourselves from attack. It is primal. An injured animal is either encircled by the group for protection or left alone.

    Letting a caregiver in is a bit like being an injured animal that is poked at. I just try to not maul them somedays.

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