Caregiver Stories

Laurie Miller Talks About the Space Between Living and Dying

Through my caregiving journey with my mother, I learned a lesson that changed the course of both my life and my work.

My mom and I were very close. Over the years, we attended several funerals together, and afterward she would casually tell me what she wanted for hers. Do this. Don’t do that. Keep it simple. Play this song. We talked about it lightly, almost playfully. I truly believed we were prepared.

My mother was a social worker who worked with older adults and volunteered with hospice. She was comfortable talking about death and dying. I thought I understood her wishes. I assumed that when the time came, our family would know exactly what to do.

What we never talked about was how she wanted to live if she became seriously ill.

In 2000, my mom was diagnosed with lung cancer. For years, she lived independently while navigating surgeries, chemotherapy, and radiation. My brothers, my husband, and I supported her, but she managed her own life and care. She was strong. Capable. In control.

Then, in 2008, everything changed.

She became critically ill and was placed in an induced coma. From that moment on, our family was responsible for making medical decisions on her behalf.

For nine months, we moved through a relentless cycle of intensive care, step-down units, rehab facilities, and hospital rooms. We were doing our best to make thoughtful decisions. But very quickly, we realized how unprepared we were.

We had talked about her funeral.

We had never talked about her quality of life.

We didn’t know what she would consider acceptable. We didn’t know what mattered most to her if she could no longer speak for herself. We had prepared for her death—but not for her living at the end of life.

Funeral plans are not end-of-life plans.

That experience reshaped me. I learned that the conversations we need to have are not just about dying. They are about living. They are about what brings comfort, what feels meaningful, what quality of life truly means, and how someone wants to be cared for if they cannot make decisions on their own.

Those nine months were the most difficult of my life. Looking back, I believe we made loving, thoughtful decisions. My mom was calm and settled at the end of her life. Still, I carry one quiet wish: that we had talked earlier and more openly about what mattered most to her. It would have given us a clearer roadmap during an incredibly emotional time.

That caregiving journey is why I care so deeply about National Healthcare Decisions Day on April 16. These are not just end-of-life conversations. They are quality-of-life conversations. And they should happen at every age and stage of adulthood.

When we share our wishes, we give our loved ones clarity. We give them confidence. We relieve them of the burden of guessing and the weight of guilt.

Most of all, we give them the gift of knowing they are honoring what matters most to us.

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