The Journey Begins With Caring

Most caregivers don't realize when caregiving begins that they are beginning a journey too. Perhaps that's because caregiving isn't as foreign to us as we sometimes think. Long before many of us ever cared for someone with cancer, dementia, disability, aging-related needs, or another life-changing condition, we had already learned something about giving care.

We cared for babies who couldn't tell us what was wrong. We sat beside children with fevers in the middle of the night. We packed lunches, scheduled appointments, cleaned scraped knees, calmed fears, lost sleep, rearranged schedules, advocated at schools and doctor's offices, and worried about people we loved. We just called it parenting. Grandparents do it. Spouses do it. Adult children do it. Siblings, friends, neighbors, church families, and communities do it. Caring is woven into our relationships. And perhaps that is the best place to begin a conversation about caregiving.

The Journey Begins Before the Title

Most people don't wake up one morning and announce, “Today I became a caregiver.” It usually happens more quietly. Maybe you start driving your mother to appointments because she doesn't feel comfortable driving anymore. Perhaps your husband receives a diagnosis and you begin accompanying him to the doctor. Maybe your child has needs that require additional attention and advocacy. Perhaps a friend is going through treatment and you become the person who consistently checks in, brings meals, or sits beside them during appointments.

At first, you're simply doing what love tells you to do. You're caring. But sometimes circumstances change. The appointments become more frequent. Medications multiply. Decisions become more complicated. Someone needs help bathing, eating, dressing, walking, remembering, communicating, or making decisions. The person you love begins depending upon you differently. And without any ceremony or announcement, caring has become caregiving. But something else has happened too. Your life has changed.

Caregiving Is a Journey, Not a Job Description

There is no universal roadmap for caregiving. One person's journey may last several weeks. Another person's may continue for decades. Some caregivers are raising children. Some are supporting aging parents. Some are caring for spouses. Others are helping siblings, friends, grandchildren, or members of their church or community. Some caregivers live with the person receiving care. Others coordinate care from hundreds of miles away. Some have large families surrounding them. Others are carrying almost everything alone. And caregiving rarely progresses in a straight line.

There may be periods when everything feels manageable, followed by moments when circumstances change overnight. There can be good news followed by difficult news. Independence can increase, decrease, or fluctuate. That's why I hesitate to describe caregiving in terms of neat “stages.” People don't move through caregiving according to a schedule. They move through it according to life.

The Roles Begin to Multiply

One of the first things many caregivers discover is how quickly their roles expand. You are still the wife, husband, mother, father, daughter, son, sibling, grandparent, or friend. But now you may also become the: Advocate. Appointment keeper. Researcher. Driver. Medication tracker. Record keeper. Decision partner. Communicator. Protector. and/or Encourager. And sometimes you become the person who has to remember what everyone else has forgotten. That responsibility can become heavy. It is possible to love someone deeply and still become tired. It is possible to be grateful that you can care for someone and sometimes wish you could have your old routine back. It is possible to trust God and still be afraid. It is possible to have tremendous patience on Monday and very little left by Thursday. Caregivers are human.

Your World May Begin to Get Smaller

Caregiving can quietly reorganize your life. Appointments determine the calendar. Plans become tentative. Sleep gets interrupted. Phone calls make your heart race. You may hesitate to leave home because you're wondering what could happen while you're gone. And even when you're physically away, part of your mind may remain on duty.

• Did they take the medication?

• Did they eat?

• Is that symptom new?

• Should I call the doctor?

• Can I leave for an hour?

• What happens if something changes tonight?

This kind of vigilance can become exhausting in ways that sleep alone cannot repair. Sometimes the caregiver doesn't even recognize how much they are carrying because carrying it has gradually become normal.

Finding Your Voice Becomes Part of Giving Care

As caregiving becomes more complex, advocacy often becomes part of the journey. You learn to ask questions.

What does that mean?

What are our options?

What happens next?

What should we watch for?

Who should we call if something changes?

Could you explain that again in plain language?

And sometimes: Can we have more time before making this decision? Advocacy doesn't have to mean confrontation. At its best, advocacy means helping ensure that someone you love is seen, heard, informed, and respected. But there is something else caregivers must remember. The person receiving care still has a voice. When possible, one of the most respectful questions we can ask is: “How do you want me to help you?” Caregiving isn't simply doing things for someone. Sometimes it means learning how to walk with them.

Receiving Care Can Be Difficult Too

This is another side of caregiving we don't discuss enough. Receiving care requires adjustment too. A person who has spent a lifetime being independent may suddenly need help. A parent accustomed to caring for children may now depend upon those children. A husband who has always protected his family may have to allow his wife to help him. A wife who has cared for everyone else may suddenly become the person receiving care. That change can affect dignity, identity, relationships, and communication. And sometimes the caregiver and the person receiving care are experiencing the same situation very differently.

One may be thinking: “Please let me help you.” While the other is thinking: “Please let me hold onto what I can still do for myself.” Both perspectives deserve compassion.

The Caregiver Needs a Circle

Perhaps this is one of the most important lessons we can learn. We often identify one person as the caregiver. Then everyone begins asking that person: “Let me know if you need anything.” It is well-intentioned. But sometimes the caregiver doesn't know what to ask for. Sometimes they're too tired to organize the help. Sometimes asking feels like one more responsibility.

So perhaps we need to change the question. Instead of: “What can I do?” Try:

• “I'm going to the grocery store. What can I bring?”

• “Can I drive you to Tuesday's appointment?”

• “I'd like to bring dinner Thursday. What time works?”

• “I'll sit here for a couple of hours. Go rest, take a walk, or do whatever you need to do.”

Or perhaps one of the most important: “I'm not calling to ask how your loved one is doing today. I'm calling to ask how YOU are doing.” Because the patient may need a caregiver. And the caregiver needs a circle.

You Don't Have to Be The Caregiver to Give Care

This may be where our understanding of caregiving needs to expand. The primary caregiver cannot—and should not—do everything. There is room in the circle for all of us. Someone can prepare a meal. Someone can provide transportation. Someone can make the phone calls. Someone can handle an errand. Someone can sit quietly. Someone can pray. Someone can make the caregiver laugh. Someone can simply listen without trying to fix anything. Those things may seem small from the outside. To someone carrying an enormous load, they may feel enormous. You don't have to be THE caregiver to GIVE care.

Caregiving Doesn't Mean Taking Over

As caregiving responsibilities increase, there can be a subtle shift that we need to guard against. We become accustomed to helping, watching, asking questions, keeping track of information, and trying to protect the person we love. Because we are so invested in their well-being, it can become easy—often without realizing it—to begin speaking for them when they are still capable of speaking for themselves. But caregiving does not automatically mean taking over. Sometimes our most important responsibility is making sure the person receiving care remains at the center of their own journey.

My husband was his own self-advocate. He had opinions about his health, his treatment, his quality of life, and what he wanted—and did not want—for himself. My role wasn't to become his voice. My role was to make sure his voice was heard. In doctors' offices and hospitals, I listened. I asked questions. I took notes. I sought clarification when something wasn't clear. I paid attention when he was tired or when conversations became complicated. I helped make sure important information wasn't overlooked. But I also paid attention to him. What was Randolph saying? What did he want? What mattered to him? What was he willing—or unwilling—to do? And sometimes my role extended beyond the medical team to our family. Those of us who loved him naturally had our own hopes, fears, opinions, and desires about what should happen next. That is human. When you desperately want someone you love to remain with you, it can be difficult to separate what you want for them from what they want for themselves.

But caregiving sometimes asks us to do exactly that. To listen. To respect. To resist the temptation to make someone's journey about our fear of losing them. And, when necessary, to stand beside the person we love and say: “This is what he wants. Please hear him.” As Randolph's illness progressed, another part of my responsibility became increasingly important: making sure the wishes he had already expressed continued to guide the decisions surrounding his care. I wasn't taking ownership of Randolph's journey. I was honoring his ownership of it. That distinction matters.

A caregiver can be a fierce advocate without taking away another person's autonomy. We can ask questions, seek information, challenge assumptions, request clarification, and make sure our loved one is treated with dignity and respect—all while remembering that, whenever possible, the person receiving care still has the right to direct their own life. Of course, there may come a time when illness or incapacity prevents someone from communicating or making decisions for themselves. That is one reason conversations about wishes, values, quality of life, and care preferences are so important before a crisis occurs. If we are eventually called upon to speak on someone's behalf, perhaps the most important question is not: “What do I want?” But: “What would they want?” That is also caregiving.

Sometimes love speaks. Sometimes love advocates. Sometimes love asks hard questions. And sometimes the most loving thing we can do is step back, listen, and honor the answer—even when the answer is difficult for us. A caregiver's voice should strengthen the voice of the person receiving care—not silence or replace it. For me, this became one of the most sacred responsibilities of caring for my husband. I wasn't there to be Randolph's voice. I was there to make sure Randolph's voice was heard. 

And Sometimes the Journey Changes Again

Sometimes the person recovers. Sometimes caregiving becomes a new way of life. Sometimes the responsibilities increase or decrease. And sometimes, despite everything everyone has done, the person we have been caring for dies. Then the caregiving journey changes in a way that can be difficult to describe. The appointments stop. The medications stop. The monitoring stops. The routines that occupied so much of your time suddenly disappear. But love doesn't.

I am learning this part of the journey now. I served my husband, as his wife and caregiver through his journey after being diagnosed with colon cancer discovered during his annual colonoscopy. I gave that assignment everything I knew how to give and then my caregiving assignment ended. Throughout his journey, my husband was his own self-advocate, as with everything My love for him did not end and neither did my faith. There is an excruciating pain in the physical separation that death brings. I don't believe faith requires us to deny that pain. Jesus Himself wept. But Jesus also said:

“I am the resurrection, and the life.” — John 11:25

And so I am discovering that two things can occupy the same heart: I can grieve deeply and hope deeply. I can miss my husband terribly and believe that death does not have the final word.

Maybe We Have Been Caregivers All Along

Perhaps caregiving isn't something that suddenly enters our lives when illness arrives. Perhaps illness simply causes us to recognize something we've been practicing for years. We nurture. We protect. We advocate. We comfort. We sacrifice. We show up. We love. And when life's circumstances require more from us, that caring may take on a different name and a greater responsibility.

So if you are somewhere along this journey today, remember: You don't have to know everything. You don't have to do everything. You don't have to pretend that you're never tired. Ask questions. Accept help. Make room for rest. Honor the voice of the person receiving care. And allow other people into your circle. And if you aren't currently a caregiver, look around. Someone you know probably is. Don't wait for them to tell you exactly what they need. Step into the circle. Because long before caregiving becomes a title, an assignment, or a responsibility—the journey begins with caring.

Bernice Tyler-Graddy

Founder, BTG Coaching & Consulting LLC

Peace. Power. Purpose. 💜