The Strong One

When Caregiving Reorganizes Your Soul

“There are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers”.

-Rosalynn Carter

Caregiving by Thor Rafnsson

The Strong One

I came across Jules as she was lost in the hallway of my hospital. She was visibly relieved when I asked if she needed help. She dropped her shoulders as I eased a heavy bag from her arm. She panted, “I’m trying to find my mother. She was moved overnight and I don’t know where her new room is. It figures, the one night I don’t stay over and something like this happens.”

It quickly became clear that there was always “something like this” happening. She carried notebooks filled with symptoms, medications, test results and procedures. When we found her mother in her new digs, she was sleeping peacefully. It looked like Jules hadn’t slept in days.

I asked Jules how she was holding up. She dodged my questions about herself and would turn the conversation back to her mom’s situation. Try as I might to inquire about her own care and coping, her refrain was, “My stuff doesn’t matter, I’m here to focus on her.”

A few days later, I responded to a “Code Purple” page to Jules’ mom’s room. A Code Purple is a medical crisis for someone who isn’t the patient: a family member or staff. Grief has a physical manifestation. I’ve seen family members faint, vomit, and collapse at bedsides. That’s why chaplains respond.

Jules became the patient. She had collapsed and was quickly placed on a stretcher and whisked away to our Emergency Department. While the medical team was attending to her, I stayed with Jules’ mom, Bev. “She was supposed to go back to the doctor; she hasn’t been to any of her appointments,” she told me between tears. And then we got the news that Jules suffered a heart attack and died.

Soon, I was walking next to Bev, seated in a wheelchair, driven by her nurse, as we turned the same corridor where I met Jules a few days prior. We brought Bev to say her final goodbye to her daughter. We were all shocked and Bev lamented, “I can’t believe this is happening, it doesn’t feel real. She’s always been the strong one. What am I going to do now?”

I still see Jules in that hallway, shoulders tight, breath shallow, carrying a bag that was too heavy for her. Jules’ story might be extreme, but it’s also familiar. There is well-known data about the impact of caregiving on one’s health – 1 in 5 caregivers rank their physical and emotional health as fair or poor. To watch that data become a reality in these women’s lives was beyond devastating. Maybe Jules missed appointments. Maybe it wouldn’t have changed the outcome. I don’t know. But I can’t think about the burdens of caregiving without remembering her.

Medicare by Leon Zernitsky

The Hidden Toll

Caregiving takes its toll on nearly all of us at some point in our lives. As a middle-aged woman, I know many people in my circles are in that “sandwich generation” of caring for young children and ailing parents at the same time.

Long-term family caregiving is uniquely difficult because it is largely unsupported by the very systems it sustains. We continue to treat caregiving as a private family matter rather than the population-level health crisis it clearly is. The physical, logistical and financial strain can be staggering.

The emotional toll is especially complex for those caring for someone chronically or terminally ill. The stakes are often terrifyingly high as one moment can carry fatal consequences. And the responsibility is open-ended and relentless. Many family caregivers are in that role until the end of their or their loved one’s life.

Some enter this role willingly. Others do not. There are diverse motivations behind caregiving. For some, it comes from a place of love; for many, necessity; and for some, contention. People are also approaching it from varied family expectations and cultural norms. Part of what makes caregiving hard to categorize is that it looks different in so many circumstances. But what often remains the same is that we are expected to figure it out quietly in a broken system at great cost to the caregiver.

NPR profiled family caregivers last year, and this paragraph has stayed in my mind:

“It’s well-known that family caregiving for sick or elderly adults can bring on stress, anxiety and depression. It can also turn you into someone you don’t even recognize. Caregivers say it scrambles old habits and patterns, rearranges intimate relationships, and forces you to confront your limits. It can excavate and reorganize the soul.”

If your soul feels excavated and reorganized, you are not imagining it.

Until we build better systems to support caregivers, much of the burden will remain unfairly personal. That doesn’t mean we are powerless. It means we need practices that tend to our soul while we carry it all.

Shave by Abbie Rabinonowitz

Carrying Without Collapsing

What follows is not met to be prescriptive, instead some thoughts to consider. These are my observations from being in hospital rooms with people new to caregiving. Long-term caregivers know much of this already and I welcome your guidance (and article links) in the comments.

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Name What’s Real

Caregiving is holy work. It is also exhausting, frustrating, lonely, and sometimes infuriating. All can be true.

If you’ve read my work before, you know I believe in the power of naming our feelings. “If you name it, you can tame it.” Repressed emotion doesn’t disappear; it burrows.

Two feelings that come up regularly around caregiving and are important to normalize are Anger and Grief.

Here’s a whole post on how to address your anger. It’s worth noting that it can come up as resentment in a caregiving situation. That does not make you a bad person; it makes you normal. I’ve counseled caregivers who not only have anger, but then they have guilt about it, which makes it even trickier to deal with.

“Caregiving is a constant act of love in the face of ongoing loss.”
— Donna Thomson

I hold what some consider a controversial opinion: we are all grieving something, all the time. In addition to other potential losses, Caregivers experience anticipatory loss and intrapsychic loss (not being the life you expected).

Here are some real quotes from caregivers I’ve known:

• “Even the way she breathes can drive me up a wall.”

• “No one sees all I do and how exhausting it is.”

• “It feels like a vacuum and it’s just sucking everything from me.”

• “People are oblivious to all I have going on. They’re talking about getting together for dinner, but that is not even a possibility for me.”

• “It’s awful, but sometimes I fantasize about life after he dies. I love him and I’ll miss him, but I think it will be easier than this.”

None of these thoughts makes someone an awful child, spouse, or parent. They are emblematic of what it means to live in the structural complexity of caregiving.

Maybe you’ve had some similar thoughts you don’t want to say aloud. But let yourself admit them somewhere, on paper, in prayer, in the car alone. There can be healing in giving voice to these interior thoughts.

Harmony by Leon Zernitsky

Find People who Get it

Caregiving can shrink your world. The logistics alone can make it hard to leave the house, let alone explain your life to someone who isn’t living it. That’s why finding even one person who understands can make a huge impact.

I remember the balm that was my new mom’s group when I had my first baby. None of my old friends cared about bowel movements or mastitis, but those new moms did. After a move and a decade passing, I’m no longer in touch with any of them, but they were my lifeline for that season.

I often speak to caregivers support groups - Strokes, Parkinson’s, Alzheimer’s and more. Nowadays, many groups are also online, either hosting meetings or having message boards or postings (if you’re on FB, there is no shortage of groups there). These are spaces where people can be with others who get it, without having to explain themselves fully. There are also so many resources available and much wisdom to share.

One person I know who gets it and helps others to be resourced and less alone is my friend, Victoria of CarerMentor. She’s taught me the European term for caregiver is simply “carer.” I haven’t quite made that vocabulary shift, but I find myself lingering over the difference. “Caregiver” emphasizes the action - what you do. “Carer” feels closer to who you are. That subtle shift feels both tender and weighty. It captures something beautiful and something risky too in how the role can become the whole self. If you’re walking this road, I highly recommend her work. She’s created a thoughtful community and a collection of anthologies that make carers feel less alone.

Fever by Katherine Bradford

Look for Respite

While in graduate school, one of my jobs was helping a non-profit run a respite center for parents of children with special needs. I set up a lot of logistics—getting people to sign up for sessions, making sure we were staffed with expert nurses, planning activities and meals, etc. But the real work came when parents dropped off their children and then had difficulty leaving. It was hard for many caregivers to cross that threshold to a few hours or days away from their loved one. Even when they had planned and longed for the break, the moment of leaving brought second-guessing.

This is much of what’s hard to be a caregiver. Knowing that others, even if their desire and expertise is strong, won’t care the same way that you do. And yet, it’s necessary because you can’t be “on” all the time. It is so hard for us to ask for help or even to know where to turn.

The guilt is real. When someone you love is suffering, stepping away can feel like betrayal. But constant vigilance is not sustainable.

You are allowed to rest even if the situation is not resolved.

If it feels impossible to imagine a break, start small, maybe a few minutes of silence or a short walk outside. Rest does not have to be dramatic to be restorative.

Listen to your Body

I still wonder what might have shifted if Jules had listened to her own symptoms with the same urgency she gave her mother’s. The physical stress of caring for others is real. Notice what it is doing to your body. Tend to it.

Your body is not a distraction from caregiving. It is part of the caregiving equation.

I used to work in a hospital that had a massage therapist on staff. In addition to being a fantastic colleague who often wandered into my office and massaged my shoulders as I typed at my desk, we also tag-teamed our care at the children’s hospital. She would massage the parent of a hospitalized child and without fail, the massage brought tears. She would arrange for me to be there right after the massage to address the unsaid emotions welling up in the parent. Often, the mom or dad had told others they were “fine” but the body knew the truth and it ultimately came out.

For more on caring for your body, I’ve written about it here.

Keep Something for Yourself

“It is so important, as a caregiver, not to become so enmeshed in your role that you lose yourself.” – Dana Reeve

Caregiving can slowly crowd out every other part of you. Without noticing, your entire identity can narrow to the one who holds everything together. Guard one small corner of your life that is not about illness or logistics. It doesn’t have to be impressive. It just has to be yours.

I’ve seen caregivers write novels at bedsides, knit in waiting rooms and run on treadmills while children sleep. The temptation is to put our whole lives on hold and prioritize caregiving, but that does us a huge disservice.

Your life will look different in this season. But don’t abandon it entirely. What is one thing that is still yours? What brings you joy?

For more on how to cultivate joy, check out this post.

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I think about Jules often. I don’t tell her story to frighten caregivers, but to honor the truth of what this work costs.

Caregiving can be sacred. It can also excavate and reorganize your soul.

If you are the strong one in your family, this is your benediction: You are not meant to carry it all alone. Your body is not an afterthought. Your life is not on pause. Love requires presence. It does not require your collapse.

Sickness and Healing by Leon Zernitsky

When I need words that hold both love and exhaustion, I often turn to my friend Kimberly Knowle - Zeller. Her first book of blessings is my go-to gift for new moms. I’ve already pre-ordered her next book, Small Steps: Blessings to Lift Your Soul on the Pilgrimage of Life. She was gracious enough to share with me this blessing from that collection. May it meet you in the middle of whatever you are carrying.

A Blessing for Caregivers

Maybe you’re bone-tired and compassion-fatigued
from caring for others
for all the times you’ve been the driver
to doctors’ visits and pharmacies
grocery runs and therapy
from washing dishes and laundry
wiping foreheads and disinfecting sheets
preparing breakfast, lunch, and dinner
and organizing pills,
God sees your work.

Maybe you’re dreaming of a break
of real rest from constant worry and stress
a break from being the one to handle
all the schedules and who needs to be where,
rest from managing others’ emotions
while being the one to pass on information and updates
and keeping your feelings bottled up,
God sees your work.

Maybe you’re unsure how this came to be
that your life revolves around another
your schedule dictated by the needs of someone else
bearing the brunt of their anger and pain
knowing all the side effects of medicine
that wreak havoc on a body you love,
God sees your work.

Your care and love
do not go unnoticed, may your offerings of healing be multiplied.

May the tenderness you offer,
also land on you.

May you feel God’s compassion
wrap around your body
like a well-loved quilt.

Close your eyes
and hear God’s words to you:
Well done, good and faithful servant.

What line from this blessing resonates with you?

Where in your life are you “the strong one”?

If your body could tell the truth about how you’re doing, what would it say?

What would care without collapse look like in this season of your life?

Related Posts:

The Body's Whispers

The Grief Before the Grief

Anger Management

Fine is Not a Feeling