Throughout this damned prostate cancer journey over the past 13 months, I have resisted the label of "caregiver." It's the word physicians and clinicians use to describe who I am to my husband. But, here is the thing, I don't want to be his caregiver. I just became his "wife" two and a half years ago. I had been his "girlfriend" for eight years before that and how I yearned to fully actualize and revel in the honor that comes with the title of "wife." But, I have only been a wife for a short time, and now... now I have to be his caregiver. YUCK!
Here's an excerpt from my book, You Have Arrived, now available for pre-sale and coming very soon to a bookseller near you, about this very real struggle that I have been processing.
To prepare for Brachytherapy, an outpatient procedure, my husband was required to fast for two days. The procedure had gone as planned and after he woke up, he felt a little woozy. His prostate gland had been injected with active radiation by sixteen needles, so the catheter was left in to allow the swelling to go down. He was full of painkillers, and he felt horrible, obviously. He was white knuckling the dashboard trying to hold onto his constitution as I navigated the roundabout and tree-lined streets outside of the hospital.
We were both relieved to be leaving the hospital. It felt nearly celebratory, and I began talking to him about the unused DNA test. That’s when he turned green. “You have got to pull over, babe,” he said. I turned into a Burger King parking lot where he opened the door and threw up the water that was in his stomach. I knew food would help, so I parked by the entrance and then ran to get him something. I came back to the car with a blue Power Aid, a small Whopper, chicken fries, and French fries. He didn’t want any of it, but I encouraged him to get something in his stomach.
He was still feeling horrible, and nothing sounded good, but he ate a few fries and drank some Power Aid, and soon the dry heaves stopped. It was a relief to know he was feeling better, so we chit-chatted about what was in front of us; a nothing conversation. The topic was the over-processed and salty food that we both found repulsive. Our family rarely eats fast food and we had forgotten how bad it was. I tried to get his mind off of how miserable he felt, and we talked about how tragic it was that so many people live off fast food because it’s fast and cheap, but devoid of nutrition.
His nausea and the clinical reality of his treatment certainly changed the topic of conversation as we drove the thirty minutes home across the bridge into Clearwater. I wanted to talk about things we needed to do next to move forward, but he could barely handle a short car ride. It was on the way home from the hospital that day that I first felt like a caregiver. I despised the word they use to refer to the spouses of the person who is sick. My husband wasn’t that sick. He was still fine and working, and we were going to kick cancer’s ass. We had a good plan medically and no chemotherapy was necessary to beat his prostate cancer, and he certainly didn’t need me to be his “caregiver.” He wasn't that sick… but today he was, and he needed a caregiver, and that person was me.
When we got home, Tony was spent. I helped him into the house, hung up his catheter tubing and bag on a chair next to our bed, tucked him in, and closed the bedroom door. I breathed a sigh of relief and broke down into tears and ran outside to breathe in the fresh air. That’s when I saw a stream of pungent liquid running down the street and a huge pool of oil under my car. I could only surmise that the oil change I had gotten a month prior had been faulty and it was on this day, of all days, that my husband could not physically help me that the oil pan cap decided to come dislodged. The timing of this environmental disaster was not lost on me. I broke down in tears again, shaking my fists at God, then regrouped, and set to cleaning it up with my son and a couple of caring neighbors. I had resisted the label of caregiver, but that is what I was, like it or not.
At any one time, about 12% of the population are considered caregivers in the U.S. and the stress they deal with, even if they don't show it, is significant. Caregivers report experiencing anxiety, depression, and substance abuse five times more frequently than non-caregivers, and six percent of caregivers resign from their jobs from burnout like I did.
The American Psychiatric Association offers education and resources for employers who want to do a better job of supporting their employees who find themselves in the caregiver role. Creating a more caring culture around caregiving is the key.
I had in my mind that "caregiver" meant diaper changing, holding one's hair while they were throwing up, sitting at their bedside reading them a book... frankly, things people have to do when their loved one is VERY sick or VERY old and my husband was neither of those, so I resisted the label. Fiercely.
I just wanted to be his wife. But now, a year later, I am wiser and I understand that the label of caregiver is not just what I have described above. Caregiving is also about emotional support, offering to dance when he seems sad, and making him a healthy lunch when he is stuck in a three-hour mandatory training class.
What I have realized is that I will always be his wife, first, and if the medical community wants to label me as his caregiver, I am okay with that because the care I provide him will get him through this. Loving him is a privilege and caring for him is what I promised to do on our wedding day, on Pass-a-Grille Beach on April 1st, 2021.
Caregiving is less clinical now, more inclusive, and more about showing up for your person when they need it, no matter how small a gesture you think it may be from the giving end. To Tony, he feels the love, and he needs the love, and I am very much his caregiver right now.
For more about busting down labels, visit my friend Katy Rey's website and read her book Your Labels Don't Define You
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