In 1978, I took care of my mother when she had cancer. I was twenty-two. I didn’t know I had PTSD back then. They actually hadn’t come up with the term yet.
My feelings were buried in those days and that was normal for me. So were being hyper-vigilant and suffering from insomnia.
I do remember being puzzled one night in 1979, when I realized I’d lost any sense of a future. It was a bizarre visceral sense, as if a huge, thick, immovable wall had somehow come up inches from my face where before my future lay open. This, I’ve come to know, is what they call “a sense of a foreshortened future”.
I also had an exaggerated startle response, which embarrassed me, and woke every night at two in the morning unable to breathe. I thought it had something to do with smoking. I didn’t know you could have panic attacks in your sleep.
During the day, I was the personification of “normal”. I was cheerful and energetic and ever-helpful, until I burned out and became sick right before my mom died.
It took about six months after she died before I regained any wellbeing. The hardest part was feeling guilty for burning-out. I didn’t know then I could’ve asked for help. I didn’t know I could’ve said “I’m so tired, I need someone to help me here” or “I need a time-out, some kind of break, to rejuvenate.”
I just kept going like a machine until I wore out.
So here I am, almost forty years later, taking care of my dear husband, Jack, who has Congestive Heart Failure and Kidney Disease. Since we moved to Arizona in August, he’s been hospitalized six times.
The experience of caretaking is different now compared to when I was twenty-two and frozen inside. One big difference is I feel my feelings now since going off the PTSD meds a few years ago (see my book: PTSD: Frozen in Time).
Sometimes the feelings are overwhelming.
And when I say overwhelming, I mean terrifying.
I am afraid of Jack suffering, of his being unable to breathe and going back to the hospital, of his kidneys giving out from the diuretics, of the possibility he’ll get a stroke, of my burning-out and getting sick and depressed.
Sometimes, I just feel scared. I wake up in the night able to breathe just fine, thank God, but I’m scared and can’t figure out specifically why. I calm down and the fear goes away when I say the following quote to myself. (It’s from the book Alcoholics Anonymous.)
“And acceptance is the answer to all my problems today. When I am disturbed, it is because I find some person, place, thing, or situation—some fact of my life —unacceptable to me, and I can find no serenity until I accept that person, place, thing, or situation as being exactly the way it is supposed to be at this moment. Nothing, absolutely nothing, happens in God’s world by mistake. Until I could accept my alcoholism, I could not stay sober; unless I accept life completely on life’s terms, I cannot be happy. I need to concentrate not so much on what needs to be changed in the world as on what needs to be changed in me and in my attitudes.”
When I was little, everyone in my family denied reality and I did, too, both involuntarily from the “freeze” of fight/flight/freeze/collapse and consciously, when overwhelming feelings came up in response to the insane behavior of those I lived with. My feelings were buried and I couldn’t release the trauma energy, which determined the quality of my life for decades to come (numbness, despair and occasional rage).
When I unconsciously fall back into burying feelings, which is essentially denying reality, fear blooms in my stomach like a sickness. But if I take a few minutes and detail the reality of what’s going on in the moment, and cry it out and/or talk it out and/or run it out—then I feel better, more grounded. I get my perspective back and I don’t feel scared anymore. I might feel concerned, but not scared like a powerless kid. I can come up with solutions.
Some people think acceptance is resignation. For me, it’s the first step to taking action.
So here I am, not clinically burned-out, but on the way there if I don’t take steps to prevent it. My biggest issues are hyperarousal, hyper-vigilance, hyper-focus on Jack 24/7 and feelings of isolation. I must get out of the house and out of my head several times a week to feel balanced. Thank goodness, I can go to support meetings and be reminded to accept the things I cannot change and change the things I can.
I need to come up with more ideas, though, because this is how I feel today: I’m so tired, I need someone to help me here and I need more time-out, some kind of break, to rejuvenate.
I’m not a machine anymore. I may have been treated like one once upon a time, but I never was.