My caregiving story: rewards, mistakes, guilt, and questions

Today's Shared Story
is written by John W. Samples,
retired executive director of the Christian Holyland Foundation.
He lives in McCordsville, Indiana.
Follow the link to discover his new podcast, Formembering, which launches today.

Hands in the Valley

My shared story begins with a journal entry I wrote Spring 2022. . . .

My mother is dying. A brain tumor the size of her hand is slowly taking her from us. We can still have talks while taking walks—with a rollator or a steadying arm—but less today than yesterday.

My wife and I have moved in with Mom and Dad to provide the direct support they now need. Each day brings new challenges, filled with the bittersweet tension of pain and blessings of doing the next right thing.

Friends who’ve never walked this road praise me for being a good son and my wife for being an even better daughter-in-law. But those who’ve been here themselves offer something different: wishes for peace and prayers with encouragements to care for ourselves. They understand something profound—that none of us are getting out of this life alive, and the best we can hope for may be to have the courage to serve someone else the way we would want to be served.

Considering the conundrum

Caregiving is a conundrum. On the one hand, it is an honorable opportunity for its own sake and with its own rewards, while the other hand is often mired in guilt and self-loathing that comes from not doing enough, or doing too much of what we shouldn’t. Both involve walking through our valleys of mistakes, where praise feels undeserved because we know the errors of our ways.

If only they knew, you know?

Since Mom got sick, I’ve become hyperaware of every moment of physical contact with her. Whether steadying her steps or holding hands while we sit, each touch is filled with the joyful discomfort of something profoundly new and necessary.

New? How is touching the woman who gave me birth something new? What have I missed, and why am I only realizing it now?

I’ve never thought of myself as having issues with touching. Yet, every time I’ve helped Mom navigate her unsteadiness or clean up a mess one of us made, I’ve felt something shift inside me. My perspectives—on her, on myself, on life—are newly tinted, though I’m still figuring out the meaning of these new hues.

Is this tied to my buried wounds from childhood? Could I have “Mommy issues” emerging through the darkness of her illness—or mine? Or am I just overthinking everything, as one does while walking through Valleys of the Shadow of Death?

Tricky parts

The answer is probably “yes” to those questions and others not yet asked. The tricky part is understanding how much weight each holds.

Maybe the really tricky part is remembering what I've already learned through other self-inquisitions. Do I want to understand better what I'm experiencing? Yes, of course. Do I want to get mired down in guilt or even in fix-it mode? I do not. 

So I say all this out loud—because putting words to fears keeps them from becoming overwhelming. Usually. In the light of day, balance becomes clearer, and the shadows less demanding. At least it’s happened that way before.

And now, at the beginning of 2025, I’ll share the rest of my story.

Mom passed away on October 15, 2022. I like to think her final moments were feeling my comforting hands holding hers, my soothing voice telling her it was okay to go. I know this hope is for me, but it would sure be nice the next time I see her to feel her welcoming arms around my neck and hear her smile as she whispers Thank You in my ear.

As I think back, I wish I could recount more details of what I felt and thought during that time, but my own memory has become unreliable.

New awareness

I don’t think it’s dementia, and the multiple doctors who have poked, prodded, and patronized me don’t think it is either. It’s probably stress, they say. Nonetheless, I have developed a new awareness, maybe a sensitivity, about those struggling with dementia and for those struggling with the strugglers.

Coincidentally (or not), my memory struggles began around the same time as that journal entry from Spring 2022. Coincidence? Probably. Maybe. 

I wish I knew.

Life moves forward, though, as memories come and go. And with that comes a deepening obsession to do good for the right reasons.

And to others walking this difficult road—whether as caregivers or care receivers—I wish you peace and prayers, and encourage you to care of yourselves, too.