The Caregiver No One Prepares You to Be

By: Amy Cavlovic 

Someone once joked that if one more person told them to “practice self-care,” they were going to scream.

Every caregiver I know laughed — not because it was funny, but because it was painfully accurate.

Caregiving is often spoken about in soft, inspirational language. What’s less discussed is how physically demanding, emotionally draining, and logistically relentless it can be — especially for the people who never planned on becoming caregivers in the first place.

The Role You Don’t Apply For

Most family caregivers don’t raise their hand for the job. They step into it quietly — because someone has to.

Today, many caregivers are older than in previous generations. People are living longer, often with complex medical needs, and the responsibility of care frequently falls on family. Many are part of the “sandwich generation,” simultaneously supporting aging parents while still caring for children, managing careers, finances, and their own health.

There is no training. No manual. No clear start date.

One day, you’re a daughter, a son, a spouse — and the next, you’re managing medications, appointments, and safety concerns you never imagined you’d need to understand.

The Physical Reality No One Talks About

Caregiving is not just emotional. It is profoundly physical.

Helping someone shower.
Changing clothes and bedding.
Managing incontinence.
Preparing meals they may not want to eat.
Listening for movement at night, wondering if they’re safe while sleeping.

These tasks are intimate, exhausting, and often invisible. They require strength, patience, and a level of endurance that few people acknowledge — and even fewer ask about.

The Emotional Whiplash

Caregiving can be deeply meaningful and deeply depleting — sometimes in the same hour.

There are moments of connection, tenderness, and love. And there are moments of resentment, frustration, guilt, and grief. Many caregivers feel ashamed for struggling, especially when they love the person they’re caring for.

But love does not cancel out exhaustion.

Both can exist at the same time.

About That “Self-Care” Advice

When caregivers hear repeated reminders to “take care of yourself,” it can feel dismissive — not because it’s wrong, but because it often comes without understanding the reality.

Self-care is hard when you can’t leave the house.
It’s complicated when finances are tight.
It feels impossible when you’re on constant alert.

Caregivers don’t need platitudes. They need practical support, flexibility, and permission to admit how hard this really is.

You Are Becoming Someone New

Caregiving changes people. It reshapes identity, relationships, priorities, and the way time is experienced.

The caregiver you become is not someone you chose — but someone you are growing into, often through trial, error, and exhaustion.

If you’re in this role, please hear this:

  • You are not weak for feeling tired.
  • You are not ungrateful for wanting relief.
  • You are not failing because this feels hard.

You are doing something profoundly demanding — often without recognition, rest, or relief.

And even on the days when it doesn’t feel like it, what you’re doing matters.

Please reach out if you need support. Our Essential Care Program can provide guidance as well as community resources that help lighten the load. 

If you have questions about hospice care or what support looks like for caregivers, our team is here to listen. www.essencehospicecare.com (949) 723-0585

Grief Begins Before Goodbye

grief being shown with holding hands

Most people think of grief as something that comes after a loss.

But for many of us, grief begins much earlier — quietly, privately, often without a name.

I learned this early in life. When I was twelve, my father died. Overnight, the world I knew disappeared, and I was introduced to a kind of fear and helplessness I didn’t yet have words for. That loss didn’t just change my childhood — it shaped my nervous system, my sense of safety, and my understanding of love.

Years later, when I was eighteen and my mother was diagnosed with breast cancer, the grief was different — but just as profound. She was still alive, still here, yet I grieved throughout her illness. Not because she was gone, but because I was terrified, she might be.

That was my first real experience with anticipatory grief — the grief that arrives before anything has ended.

What Anticipatory Grief Looks Like

Anticipatory grief is the grief we feel when we sense a loss is coming. It can show up when someone we love is dying, when illness changes a future we imagined, or when life takes a turn, we didn’t expect.

In hospice work, we often walk alongside people who are carrying layers of grief — past losses that were never fully processed, mixed with the quiet ache of what they know may be coming next. This is sometimes called cumulative grief, and it can feel heavy in ways that are hard to explain.

People respond to this grief differently.

Some lean in — they want to talk, remember, prepare, and connect deeply.
Some hold back — protecting themselves from pain they fear might undo them.
Others move forward as if nothing is changing at all.

None of these responses are wrong. They are all attempts to survive love.

Grief After COVID: When Loss Is Sudden

In recent years, especially post-COVID, there has been more conversation about grief after sudden loss. And rightly so.

When loss is abrupt, shocking, or traumatic, the nervous system often goes into survival mode. Many people describe feeling numb, detached, or unreal. In these cases, grief doesn’t arrive immediately — it has to wait for the shock to soften first.

This can confuse people. They may wonder why they aren’t “grieving properly,” when in reality their bodies are simply trying to protect them.

There is no timeline. There is no correct order.

Grieving What Was — and What Won’t Be

Grief isn’t limited to death.

I’ve spoken with parents of autistic children who describe grieving the life they imagined for their child — and for themselves — when a diagnosis is first given. That grief is real. It doesn’t mean they love their child any less.

What’s powerful is what often comes next.

Over time, many parents describe a shift — from grieving what they thought life would look like, to becoming present for what is. They learn to celebrate a different path, a different normal, one that is still meaningful and full of love.

This, too, is anticipatory grief — and transformation.

The Quiet Risk of Anticipatory Grief

Anticipatory grief is normal. It is human. It is often unavoidable — especially if you’ve known loss before.

But there is a quiet risk: that in bracing ourselves for what might happen, we miss what is still here.

The moments.
The connection.
The life in front of us.

Anticipatory grief doesn’t mean you’re giving up hope. It means you love deeply. The work is not to eliminate it — but to notice when fear begins to pull you away from the present.

Walking With It Gently

If you’re walking alongside someone who is dying, or living with the fear of loss, please know this:

  • It is normal to grieve before goodbye.
  • It is normal if old losses resurface.
  • It is normal if you don’t have words for what you’re feeling.

You are not broken. You are human.

And if you can — even briefly — allow yourself to return to the moment in front of you, there is still life here. Still love. Still meaning.

Grief does not mean the end of connection.

Often, it is proof of it.

Being a Caregiver on the Hospice Journey: What Matters Most

caregiver with someone in hospice

When someone you love begins hospice care, the world often feels quieter—and heavier—at the same time. Many caregivers tell us they feel unsure of what they are supposed to do, while carrying a deep desire to “do it right.”

The truth is: there is no perfect way to be a caregiver. There is only presence, compassion, and permission to be human.

Hospice Is About Living, Too

One of the most common misconceptions about hospice is that it is only about dying. In reality, hospice is about living as fully and comfortably as possible, for whatever time remains.

As a caregiver, your role is not to fix what cannot be fixed. Your role is to walk alongside—to help create moments of comfort, dignity, and connection.

Sometimes that looks like managing medications or coordinating visits. Other times, it’s simply sitting quietly, holding a hand, or sharing a familiar story.

All of it matters.

What Caregivers Often Carry (But Rarely Say Out Loud)

Caregiving can bring love and meaning—but it can also bring exhaustion, grief, guilt, and fear. Many caregivers silently wonder:

  • Am I doing enough?
  • Why do I feel overwhelmed when I love this person so much?
  • Is it okay to feel both grateful and devastated at the same time?

Yes. All of it is okay.

Grief does not wait until after a loss. It often begins the moment life changes. Hospice teams understand this and are here not only for the patient, but for you as well.

You Don’t Have to Know Everything

One of the most important things caregivers can remember is this: you are not expected to be a nurse, a social worker, or a chaplain.

Hospice is a team approach. Nurses manage symptoms. Social workers support emotional and practical needs. Chaplains support spiritual concerns—whatever that means to you. Volunteers may provide companionship. Your job is not to replace any of them.

Your job is to be you.

Ask questions. Speak up when something feels off. Accept help when it’s offered. Let the team carry some of the weight.

Small Acts, Deep Meaning

Often, it’s the smallest things that bring the greatest comfort:

  • Playing favorite music
  • Keeping the room calm and familiar
  • Offering sips of water or lip balm
  • Speaking softly, even when you’re not sure they can hear

Love is felt long after words fade.

Caring for Yourself Is Not Selfish

Caregivers frequently put their own needs last. But hospice journeys can be long, emotionally intense, and physically draining. Taking care of yourself—eating, resting, stepping outside, asking for respite—is not abandoning your loved one.

It is how you remain present.

You Are Not Alone

If you take nothing else from this, take this: you do not have to walk this journey alone.

Hospice exists to support both patients and the people who love them. Lean into the care. Lean into the questions. Lean into the moments of connection, however small they may seem.

You are doing something profoundly meaningful—simply by showing up.