I've been a widow for six years now. You would think that after all of that time and the encouragement to not feel guilty about my husband would have sunk in by now. It hasn't. Not completely.
Recently, I heard about a friend of a friend who had to turn off a respirator for her son who had been battling terminal cancer. I felt bad for her, and for him. He fought cancer for two years but it clearly became too much. They decided that he was struggling too much and let him go.
That’s a tough decision to make, but I can tell you it goes much deeper than that.
What people don't realize about having to stop life-extending or -saving measures for their loved one is not just about the person dying. it's the thoughts that crawl into your brain after you've made the decision and everything is all over. Should I have given him more time to recover? Would he have recovered? Since Tony was no longer talking or really lucid that last day I couldn't ask him what he wanted. We had talked about it years before when my dad died and we'd already decided that machines were not the answer to life.
So yes, we had had that conversation, in part. But when you make a momentous and life-changing decision like that you don't just want to be the only one making it. You need to hear that someone else is okay with it. I needed to know that he was okay with it. I don’t know that he was.
Tony was fighting sepsis. For those last four days of his life, the medical professionals filled his body with drugs and kept him hooked to machines in order to help that body fight the infections ravaging him. Everything they did just seems to keep the scales balanced - nothing really helped him get better. The more they did, the more I cringed because he seemed to just be sinking. Over the previous three years of his illness, I made sure that they threw everything but the kitchen sink at him to make him better. Those things seemed to work. What they were doing at that point was not.
Thinking back, there came a moment of clarity, a moment where I just didn’t want to hear “Mrs. Barnes, we’re trying this next because that isn’t working” again. I felt that moment in my soul. Inside that moment, enough was enough. I didn’t feel anything else in that moment. We would stop all the tubes, lines, and wires and see how Tony felt about that.
In that moment, inside my head, I said, “Okay, Tony’s strong. He doesn’t need all of this. It’s not helping anyway. So let’s turn it all off and see what he wants.” With a trembling hand, I signed the papers they shoved under my nose about not resuscitating him.
Once the machines measuring his breaths and heart rates stopping finding anything to measure, the room grew still. Taking her eyes off of the now silent monitor the nurse laid her fingers on his neck to feel a pulse, looked at me, and silently shook her head. Right then, the moment changed.
At that moment...I was no longer sure that was what he wanted. My confidence in what I thought I knew left me the moment my husband’s spirit left his body.
The guilt began to creep into my heart. That’s a lie. Creeping doesn’t describe it at all. The guilt starting building a wall around my heart, big, heavy bricks of guilt. The guilt became as heavy as the grief I felt.
Only a few people knew the decision I made about Tony in the end. The three people who witnessed our final goodbyes, the hospital, my mother and my sister, and eventually, my eldest son. I couldn’t bring myself to tell his family the decision I made. They had already made me feel guilty about other things we had decided. There was no way I was telling them THIS.
So I couldn’t really talk to anyone about what I had decided. The guilt was overwhelming me. Some days, even overwhelming my grief.
Did I kill my husband?
Could he have made it?
Did he fight at the end because he wanted me to turn the machines and drugs back on?
I cried over and over to myself...What did I do?
Then I was screaming...WHAT DID I DO?
Grief, anger and guilt were running neck in neck, controlling my emotions, my patterns of thinking, everything. I was consumed with the constant what-ifs.
I couldn’t decide what I was feeling...anger because we didn’t discuss the decision again when it needed to be discussed, more anger because that decision was left to me and only me. Pain, because I never wanted him to die. Guilt, because deep down, I wondered who I had really made that decision for?
I have spent a lot of time reflecting on everything, trying to scale the guilt wall I had built around myself.
The past three years of coping with his illness were beyond difficult. I was splitting time between work, our boys, and the constant hospitalizations, keeping track of and administering medications, and the total care he was needing from me. I was tired - to my very core.
But so was he. I could see it in the way he seemed to not be fussing about being back in the hospital like he always did. He also wasn’t talking back to me, just occasionally opening his eyes to look at me as if to say, “Really, AGAIN? When will this just stop?” He seemed tired of it all.
When the nurse told me that essentially that there was nothing else to do for him except pump him full of more medications, something brought clarity to my mind. It was like someone had said to me, “No. Just...no. No more.”
Perhaps it was Tony reminding me of our conversation. Perhaps it was my own heart which was tired of seeing the love of my life getting continually flogged by medical science.
Whatever it was, my mind was clear and it was ultimately my responsibility to answer the question of why and what now. Answer it I did. I did it for him, and me.
That is how I push myself up and over the guilt wall...remembering that clarity of thought. Understanding and knowing that it really was the right thing to do.
I still have my days of feeling guilty, especially when I gaze at his picture and remember the strong vital man he was. I think about how hard he fought it all, with me alongside. I believe the what-ifs will still always plague me...but deeper down, I know I did what he wanted for us. That’s what keeps me from adding bricks to the guilt wall.
You can reach Cheryl through her public Facebook page, Widowness and Light, which is based on her widowed journey.
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