The Reason I became a Caregiver

Hint: It wasn’t obvious, at least to me

I was a 59-years-old broadcast journalist when I decided to do something I’d never anticipated — I moved in with my 95-year-old mom when she could no longer care for herself. It wasn’t actually that hard a decision to make. My mom and I had always been close, and my life was full, but flexible. It all seemed pretty straightforward. I was able to hire wonderful help so that I could work during the day, and then I took over at night and on the weekend and did the best I could.

But of course, there was a great deal I didn’t know. I didn’t know that I’d become so exhausted or be capable of getting so angry. I didn’t know that caregiving would humble me, change me and challenge me more than any other life experience. And I sure didn’t know that my mom would live another ten years before passing away at the age of 105.

In some ways, my naivete was useful. If I’d known then what I know now I might not have made the same choice. Sure, I experienced hard times I’d never imagined, but I was also rewarded in ways I never dreamed. I got it all, and because of that I’d make the same choice again.

And yes, it was a choice.

Unlike many family caregivers -- spouses in particular – my becoming a caregiver was up to me. It was, in a sense, optional. That’s not the norm. I also had resources many caregivers don’t. My mom lived in the same home my folks had purchased in Menlo Park, California in 1950 for $15,000 – a home smack dab in the middle of Silicon Valley – and by the time I moved back in with my mom, it was worth just a bit more. I borrowed against the house to hire help, but the truth is I could have hired enough help that my daily presence wouldn’t have been necessary at all – at least not for many years. But while all that’s true, that wasn’t why I made that choice. It was just something I felt I needed to do.  

But why?

Sure, my mom and I were close and sure she needed assistance, but what if there was more to it than that? What if my mom wasn’t the only person who needed help? What if I did too and just didn’t know it at the time?

My mom’s needs were straightforward — mine were more hidden from view. I was mostly a nice, reasonable, mild-mannered kind of guy, but I’m also someone who can think too highly of my own opinions. I like figuring things out and I like being right — and worse I like explaining why. And that meant there was a certain amount of hubris to my decision. Of course, I could do this.

The author Anne Lamott describes that orientation perfectly: “When we are stuck in our own convictions and personas, we enter into the disease of having good ideas and being right … We think we have a lock on truth … but the bigger we pump ourselves up, the easier we are to be pricked with a pin.”

And I was about to get pricked. When the person you’ve chosen to live with becomes less rational and less able to reason, being excessively reasonable and rational doesn’t work. Nor is the ability to analyze problems and present logical solutions sufficient. And the desire to be right – and get credit for it – is especially unhelpful. I needed a different kind of expert to retrain me, and that person was right in front of me, wielding just the right pin.

My conscious reasons for moving in with my mom were unquestionably true, but was it just a coincidence that I wound up in a situation that would reveal my shortcomings so starkly and then force me to contend with that discovery? I took on a role where solutions work only until they don’t, where you never know what lies ahead, and where believing you’re right is fundamentally wrong. As a caregiver, I often felt like I was driving a car that was careening down a hill and no one was wearing a seat belt. Sometimes I wasn’t sure I was even in the front seat.

That meant I pretty much had to change my fundamental M.O, and that over time — in my case a lot of time — I became a little less certain and a little less needful of being right. I think that happened because I witnessed what true caregiving entails. I saw what Eileen and Sinai, the women who helped me care for my mom, did day in day out. I saw their tenderness and compassion, the gentleness they offered with a simple touch.  They met my mom where she was. They listened. The work wasn’t about them. It was about her.

Eileen and Sinai seemed able to provide exquisite care with infinite tenderness. Unlike me, they almost never got frustrated or angry. Sure, caregiving was their profession, but it was more than that. Something that became clear to me during a series of startling conversations I had with Sinai.

“Dave,” she told me one day, “I haven’t told you this yet, but I have cancer.” She’d discovered a lump in her breast a few months before and had been diagnosed with stage three breast cancer. She was going to start chemotherapy the next week, but that didn’t change her commitment to caring for my mom. Indeed, a few weeks later, she told me she was glad to experience chemo. Bewildered, I asked her why.

 “It helps me understand what the people I take care of must feel like,” she said. “I’ve always been healthy, but now I know what it feels like to be tired and sick. It helps me understand what’s going on when your mom says ‘no’ when I’m trying to give her a pill or just help her with something. I understand what she means now in a different way.”

I don’t think it would ever have occurred to me to say what Sinai did, to be grateful for pain or sorrow or sickness because it helped me better understand the suffering of others. That fundamental life orientation wasn’t part of me. But Eileen and Sinai seemed able to meet caregiving’s incessant demands with quiet perseverance, sustained by something larger than themselves. They were both women of strong faith, one Muslim, one Christian. For them, caregiving was a true calling. It may have been their profession, but it was also a shared enterprise. They believed they were doing God’s work too.

One night, when my mom was approaching the end of her life, I peeked into her bedroom and saw Eileen sitting by her side with her back to me. I watched for a moment before I realized that Eileen was wearing her prayer shawl and holding her Muslim prayer beads. She was murmuring softly in Hindi. I backed away.

The next morning, I told Eileen how touched I was by what I’d seen. She smiled widely and said, “Well, Sinai taught me the Lord’s Prayer, so sometimes I say that, too.”

But that doesn’t mean caregiving requires believing in certain religious tenets. Instead, as author Christian Wiman has written, living according to one’s beliefs, is finally a practical matter, “a physical act renewed (or not) at every moment.” And caregiving, at its core, is a physical act. Indeed, I think the actions that matter most in life, including how we care for those we love, are physical acts that always require renewal. They are renewed (or not) by what we say and do for someone we love whose vulnerability is complete, even when we’re weary, perhaps especially when we are weary. They are renewed through persistence.

That’s what Eileen and Sinai demonstrated, but it’s also what I’d seen in my mom — the single most persistent person I’d ever known. She kept providing acts of care well into her 80’s, whether that was registering new voters, or calling a cab and heading out into the rain to read to old friends or always standing by my dad’s side as his Parkinson’s disease continued to advance.

My friend Jim Neafsey, a former Jesuit, says that we both carry others in life and are carried ourselves. Eileen, Sinai and my mom were all willing to be carried beyond themselves so that they could carry others.

I think that’s why I needed to move in with my mom. I had some carrying to do, even though I didn’t know it, and then I wound up being carried too. And when you experience both, it increases your capacity to persist, to offer care and be renewed in the process.

Providing care, especially over the long haul, can’t be a do-it-yourself project. I needed more and more help as the years went by, and I was lucky enough to receive it. We don’t just need what Lincoln called the better angels of our nature — we need to be able to sustain them. We do that by reaching out to others and being embraced in return. We do that by accompanying each other. Yes, I moved in with my mom to lend a hand, but it also resulted in an experience that gave me faith in what the novelist Marilynne Robinson calls the “reservoir of goodness” that allows us to “do for each other in the ordinary cause of things.”

Whether that’s called faith in God or faith in human possibility, I’m not sure matters very much. All I know is that we’re not alone, and that we are restored when we act in common, according to the tenets of the heart.

Dave Iverson is a retired broadcast journalist and the author of Winter Stars: An Elderly Mother, An Aging Son and Life’s Final Journey,