When the caregiver becomes the patient

With a sudden medical crisis, this lifelong caregiver is in the unfamiliar position of being cared for. Shame, guilt, impatience and discomfort shadow me. I'm learning to surrender to care.

My mother sits on the chair in her bedroom at the house we share in Venice, Florida. She looks straight ahead as I kneel at her feet, pulling on her pants and then her socks, brushing her thick gray hair. I give her an encouraging smile and help her to her feet. We make our way to the kitchen table where she sits down and waits for me to make her breakfast. She is lost in the world of dementia that has brought her to this level of dependence—one she would have resisted with all her intelligence and physical strength had she been able.

Flash forward two years. My younger daughter Sara kneels at my feet and helps me pull on my socks and sweatpants. She helps me up, my lower back pain from severe, debilitating lumbar pain and possible herniated disc making me feel two decades older than my 64 years. She gives me an encouraging smile.

I tell her, “I’m so sorry. I hate this. I hate that you had to drop everything and come here to help me. This isn’t the way it’s supposed to be.”

She hugs me, this sweet little girl of mine, not so little anymore, at 30 years old and engaged to be married, with her full life in Paris with her Moroccan fiancé. “But you took care of me all those years, Mamma. This is the least I can do. This is only temporary,” Sara says. “You’re so strong. You’ll get better. You are the best mother and role model any daughter could ask for.”

Photo by Zoe on Unsplash

I swallow back the tears. Why is that I feel shame and guilt instead of simply deep gratitude that I am blessed with such a daughter—two of them, in fact, with her equally caring older sister

Marielle Velander

who writes

The Adventure Agenda

on a trip to Machu Picchu and Chile which I had planned to join before my low back pain erupted. Of course I feel gratitude for my daughters, every day of my life. They are the center of my world.

And yet there is something wrong with this picture, my daughter taking my arm to help me shuffle along to the living room, barely able to sit for more than a few minutes, accompanying me to the chiropractor’s office for my now daily visits. Her supple younger back grabbing things I can’t reach—for now.

With Sara’s healing magic, I managed a slow walk down to the sea in beautiful Badalona where I live, just outside central Barcelona.

As a lifelong caregiver, I am the one who is supposed to administer care, to rush to the aid of a loved one who needs me.

I think of the years of raising these two girls, where every moment, no matter what I was doing, I was focused on their well-being. I think of my younger sister’s health crisis in 2019 when she lived with us and needed constant care. And I think of the 2.5 years as full-time at-home caregiver for my mother as her dementia and physical frailty worsened until, after a final few months in a memory care facility, she was finally released from her suffering.

I’m much more comfortable being the caregiver than receiving care. What can I learn from this experience? A great deal, it seems. Today I share four lessons about the resistance to and the rewards of shifting my perspective from caregiver to beneficiary of care, and prompts for you to ponder.

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Lesson #1: I am not alone. I am part of a sisterhood of women who hold up the world and are reluctant to put down the burden.

I know that I’m not alone as a woman who feels discomfort and even shame when we are thrust from our role as caregiver, or if we choose another path than the caregiver role thrust upon us by virtue of our gender. This is the societal conditioning we’ve had since birth. We are the caregivers.

Worldwide, up to 81% of all caregivers for older people are female. Studies have shown that about 75% of women are main carers for children. More than 60% of those who care for an adult or child with disabilities are women. And over 80% of paid in-home caregivers for seniors are women. Whether they work in private homes or in care institutions, this is a workforce that is woefully underpaid and undervalued, as care advocate and activist Ai-Jen Poo, director of the National Domestic Workers Alliance (NDWA), told me in an interview published on “Living in 3D” last year:

This publication for its first year or so was called “Living in 3D: Divorce, Dementia and Destiny.” As the challenge of navigating a late-in-life divorce after three decades receded as a defining factor of my life, dementia caregiving continued to be a focus until my mother’s death in April 2024. I wrote about what it was like to be a caregiver—as both a loving act and one that can foster exhaustion and resentment—with as much honesty as I could. Here is a compendium of those articles; I hope you find value in them.

For caregivers, a compendium of resources to help you take care of yourself, too

On Substack, I have found a community of caregivers who write beautifully, honestly, often searingly about the experience of caregiving. As our words flow together, they remind me we are never alone. Here are just a few:

Carer Mentor: Empathy & Inspiration

by

Victoria

, who has cared for both her elderly parents through many health crises. She shares heartfelt empathy for caregivers. Her publication is a hub of practical tools, resources, and experts' insights: “ a portal of hope and community network.” Victoria has become a friend, reaching out to me personally on many occasions to see how I’m doing.

The Salty Crone by Prajna O’Hara, who shares openly about “the bravest person I know,” her daughter Abby, living with severe disabilities. “I write from the margins of life because this is where I dwell—with differences, disability, and GIFT. The more I stay here, leaning into the human, the more words pour out of me—like a river.”

Everything is an Emergency by Bess Stillman: An ER doctor, new mother, recent widow and beautiful writer who shares the story of caring for her late husband as he was “dismantled ruthlessly by cancer” while she carried their unborn daughter Athena. She writes in this raw, vulnerable essay:

“In a culture obsessed with snapping back there’s little warning that the body is a fragile garment, an easily overstretched sweater that never returns to its original shape. I’ve unraveled.”

I will continue to write about caregiving because there is nothing more essential to the act of loving and being loved than giving and receiving care.

Your prompt, for journaling or meditation: In what ways have you both been a caregiver and received care? How have family and societal expectations influenced your role as a caregiver? Has your body shown you, as Bess writes above, that you are “unraveling” under the pressure of caregiving?

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Lesson #2: Accept that you are as deserving of care as anyone else.

The ongoing challenge for me, especially as I grow older, is to accept that I will shift continually between the role of caregiver and the one who is cared for. Old age is not for the faint of heart—I am learning that now. My whole life I have taken for granted my ability to handle any physical challenge I set for myself. It was only six months ago that I made the famous pilgrimage of the Camino de Santiago, a 186-mile walk across Portugal and Spain with Marielle—a journey we chronicled in this series about “walking myself home” and which I introduced with these words:

“My eyes are on the road ahead as it reveals new vistas at every turn on the path. I realize that my destiny is not something to be managed but a gentle unfolding that invites the grateful acceptance of my whole self that I seek. The deep, full, healing breath in each step is the only answer I need.”

I look back at that essay and realize something: In my typical I can-do-anything and I can-do-it-all-right-now enthusiasm, I underestimated the toll of my transatlantic move at the end of a tumultuous year of adjusting to post-divorce life and the grief after my mother’s death. I had forgotten “that gentle unfolding that invites the grateful acceptance of my whole self…those full, deep healing breaths.” Thank goodness I can turn back to wiser me in her various incarnations.

There’s another layer to add to this inner journey of discovery: acceptance of my human vulnerability. Learning to accept that this whole, beautiful, human, flawed self may sometimes physically, emotionally or spiritually break down. At those times, I will need to lean on others, and allow them to hold me up. With gratitude and dignity and without guilt or shame. With unconditional love for myself.¹

Your prompt: Do you have resistance to accepting care from others? Dig deep and ask yourself what fears lie behind that resistance. What could you gain by seeing yourself as deserving of care?

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Lesson #3: Surrender the control you hold so tightly. It is hurting you.

In an ancient story from China, traps were set for monkeys by hollowing out a coconut the size of a monkey’s open hand and placing rice in it. When the monkey fisted the rice, its hand could no longer fit back out through the opening. The monkeys that were caught were those who would not let go of the rice—becoming prisoners of their own making.

I read this allegory in Mark Nepo’s Book of Awakening on March 7—the day I could not get up off the floor and later fainted from the pain in my low back.

Ever wise, Nepo asks: What is our rice and what is keeping us from opening our grip and letting it go? For Nepo, it was his mother’s elusive love and approval: “I realized that had been my rice—the more it has not come, the tighter my grip…my hunger for love has always been the master of my reach.”

As I pondered this, lying stiffly on my back in bed, the word that floated up was “control.”

Control was my rice—wanting something to be different. This longed for new chapter in Barcelona—this third act on the threshold of age 65—was going to go exactly as planned if I had anything to do with it. I would accomplish the move to Spain, find a place to live, continue to work on my work projects and creative writing including the novel I’m trying to publish and be absolutely ready to travel to South America for a month, including an ascent of Machu Picchu. And why wouldn’t all this be in my control?, I told myself. Mind over matter has always been my mantra.

Instead my body, my low back in particular, was letting me down precisely when I needed it most. I desperately wanted things to be different. The more I held tightly to the idea that I could control this situation and somehow survive a 12-hour flight to Lima, Peru, the more my body protested—until the day I couldn’t get off the floor.

My yoga therapist, myofascial release therapist and friend Michelle Andrie, an author and expert in the energy body I have interviewed here, teaches that there are four root causes of low back pain: anger, fear, control and stress. When low back pain is centered in the piriformis muscle, as it is for me, it is about “wanting to control something you wish was different than it is…responding to signals from the brain when we desire a change, either internally or externally,” Michelle teaches.

There can be no change without healing. And healing requires an act of surrender. To let go of the rice. To let go of control—the idea that healing with happen on a specific timetable in a specific way. To cultivate patience and curb my thinking around scarcity of time and opportunity. To open myself to the possibility that I can feed myself in ways I’ve yet to discover, in this, my Year of Discovery.

Your prompt: Are you a control freak, like me? What is your rice? What do you think lies beneath this desire and need for control? What would the risks and rewards of letting go look like for you?

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Lesson #4: Embrace rest as its own act of resistance.

I grew up with a mother who seldom sat still. She was a homemaker busy raising three children in the 1960s while my father worked long hours in New York City, arriving home by commuter train when we were fed, bathed and ready for bed. When we were old enough, she began working part-time out of the home. Rest was not a concept that I believe my mother thought about a lot. It probably felt like a luxury to her. I certainly can’t remember her ever taking a nap.

That is why I consider so important the work of Tricia Hersey, an American poet, performance artist, and activist best known as the founder of the organization The Nap Ministry. She refers to herself as the Nap Bishop and advocates for the importance of rest as a racial and social justice issue. She is the author of the New York Times bestseller Rest Is Resistance. I first came to know her from a conversation on the podcast “We Can Do Hard Things.” Tricia dares us all, especially women and women of color, to imagine a new world: one in which we subvert the narrative of productivity at all costs and embrace rest as a healing spiritual practice.

Tricia has a new mantra I know I need to adopt: “Focus on the escape. Focus on the transformation. We can just be. We are beautiful. We are enough. We are escape artists. We Will Rest!”

When we allow ourselves to be cared for, we must rest. My mother didn’t model that for me because it wasn’t modeled for her. Now that I know better, I can do better. It is in my power to change that generational legacy. I have explored this before but I still have a long way to go to fully embrace rest.

The Radical Act of Rest

Now several times a day, since sitting for more than a few minutes is painful and standing for hours is hard on the body, I must lie on my bed and rest and yes, maybe even close my eyes and nap. It is not easy for me as a lifelong resister of naps as “unproductive time” to allow myself this time. But I am learning to sink into that good, nourishing, healing escape, knowing I am worthy of the rest.

Your prompt: What is your attitude towards rest? Is it challenging for you to put everything down, physically and mentally, and simply rest or nap? Explore why that is. How was rest modeled for you? What might taking midday naps, resting and slowing down teach you? Can you see rest as an act of resistance?

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JOIN THE CONVERSATION: In the comments, share your responses to any of the prompts. This is a safe space to share and to learn from and be supported by one another.

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1. Here are two meditations on Insight Timer that have been helping me in my healing: Our Power to Heal and Repair, Davidji, and I Love You I am Listening, Sarah Blondin