When the Hospice Nurse Becomes the Family Member

For more than a decade, I have walked alongside patients and families through the dying process. I have listened to their fears, witnessed their tears, answered their questions, and tried to help them understand what was happening to someone they loved.

I thought I understood.

But looking back, I could not fully comprehend the depth of what they were feeling.

Then it was my turn—and it became personal and all too painfully real.

My mother was the one lying in the hospital bed.

She was unresponsive and unable to speak to us. Instead of being the hospice nurse answering the family's questions, I was the daughter looking for answers.

I know what it feels like now to hear a physician give a poor prognosis and realize that my sisters and I must make decisions for someone we love deeply.

I know what it feels like to be her medical power of attorney and carry the responsibility of choosing comfort rather than further treatment.

And I know what it feels like to sit beside someone you love and watch for the smallest changes—the sound of her breathing, the movement of her chest, the color of her skin.

As a hospice nurse, these signs are familiar to me. I have explained them to families many times.

But knowing what they mean clinically is very different from watching them happen to your own mother.

When Clinical Knowledge Isn't Enough

There were moments when the nurse in me understood exactly what was happening.

But the daughter in me didn't want it to be happening.

I realized that families can understand what we are telling them and still struggle to accept what is unfolding in front of them. They may ask the same questions more than once. They may watch every breath. They may wonder how much time is left.

They aren't necessarily asking because we haven't explained things well.

Sometimes they are asking because they are trying to comprehend something their heart is not ready to accept.

I understand that now.

The Importance of Presence

During my mother's final days, our family gathered around her.

Her grandsons and their families came to see her. We played her favorite hymns from our phones. We also sang those hymns when a granddaughter played on a keyboard and another grandson played his guitar. We had a mini jam session in her ICU room. We prayed over her. We talked to her even though she couldn't answer us. One by one, the people who loved her had the opportunity to say goodbye.

Those days were painful, but they were also precious.

And they reminded me that hospice nursing isn't only about managing symptoms or explaining the physical changes that occur at the end of life.

Sometimes what a family needs most is reassurance.

They need someone who isn't afraid of what is happening.

Someone who can answer their questions patiently.

Someone who can help create enough peace around the bedside for them simply to be a family.

Standing on the Other Side

For years, I witnessed the dying process through the eyes of a hospice nurse.

Now I have experienced it through the eyes of a daughter.

It was heart-wrenching.

This is no longer secondhand knowledge for me.

When I return to caring for hospice patients and their families, I know I will return differently. I will still bring my years of nursing experience with me, but I will also carry something I didn't have before.

I know what it feels like to sit on the other side of the bed.

I know what it feels like when the patient isn't simply a patient.

She is Mama.

And when I walk into the home of another hospice family, I hope I will remember that.

Behind every question may be fear.

Behind every tear is a story.

And lying in that bed is someone deeply loved.

I thought I understood that before.

But now I believe I really know.

And life—and the way I care for families—will never be quite the same again.

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