It was a big step for me finally to wear the label caregiver
The first time my friend called me a caregiver, I was shocked.
I knew my wife had a progressive, debilitating disease. But I kept telling myself it hadn’t advanced that far. We enjoyed TV shows together. We went out for dinner. We welcomed friends into our home. We laughed. We were partners.
My kitchen
But she was becoming a different person. She consulted me about almost every decision; she told me about turning on the front porch light and never threw anything away without asking whether it was trash or recycling.
“Where do you put this tray?” she wanted to know one night when we were emptying the dishwasher. Where do I put it? I don’t put it anywhere! I’m still trying to figure out where YOU put things. This is YOUR kitchen.
But it’s not. It has become MY kitchen, a place where she helps when I ask her, a domain where I am totally in charge. Accepting that has been one of many slow steps toward accepting my new reality. These days I initiate or manage virtually every area of our lives together. I am a caregiver.
My resentment
The term implies a grace I want to embrace. What could be kinder or nobler than giving care?
But when we’re running late and my wife can’t find her purse . . . when she volunteers to slice the tomatoes but then asks me, “How many slices?” “Are these the right size?” “Where should I put them?” . . . when she lies on the couch, concentrating on her phone while I sweep the floor just before company comes . . . when she gets up to go to the bathroom three times after we’ve settled in for the night and each trip requires rousing out of bed to help her put on her CPAP machine . . . in these and a hundred other times like them, I don’t always feel gracious.
In fact, I used to resent that I needed to ask her for help with housekeeping tasks, remember for her to bring a mask to the doctor’s office, become the keeper of her calendar and the manager of her medicine. And such simple duties still sometimes frustrate me.
My anger
But I’ve come to realize that though frustration may be legitimate, anger at her is not. “Are you frustrated with me?” she asked in the car the evening we left the Super Bowl party at halftime because she was restless and ready to go home. I sighed and paused and finally said, “No . . . I’m frustrated with life.”
Like many, especially many Christians, I’ve been conditioned to feel anger is wrong, but part of my transition to caregiver has been to accept the anger. It’s OK, I’ve decided, to be angry at a disease that everyone close to it hates. It’s OK to be angry at Satan, the author of evil who creates a virus that grew to a worldwide scourge, who inspires a despot to kill children in Ukraine, who unleashes afflictions like Alzheimer’s and Parkinson’s to upend life for uncounted millions.
I’ll curse the devil, but I cannot be angry at this good woman who still smiles warmly at friends at church who give her hugs, who still sometimes chuckles when I try to make her laugh, who was admired and loved by so many who knew her long before the pathways in her brain became clogged.
My label
Instead, I am learning to feel good about giving. Giving structure in a life that can’t create it. Giving stability with a schedule that can’t be remembered. Giving love that is not always seen but I’m confident is regularly felt. Giving care. Caregiving.
I’d been caregiving for two years before I was willing to wear the label, least of all in a public forum like this blog. But it’s therapeutic for me to acknowledge the brokenness and opportunity that come with the term.
Brokenness, because it’s not how I ever would have sought to live this chapter of my life.
Opportunity, because only now am I learning new truth about God, goodness, love, sacrifice, and service.
I do care. And so I give. And I pray for energy and grace to keep giving at those moments when, really, I’d rather not.
Photos by Iz zy on Unsplash and Angela Roma from Pexels