Be caring, open with a dying loved one

Stephenie Christos

is a writer in Philadelphia

I don't know what day it was when I heard my mom speak to me for the last time, but I do remember the words.

Mom said she couldn't have lived that long without me. She said that she was sorry she ruined my life and that she loved me.

She clearly did not ruin my life, but I worked really hard at trying to make her live for as long as she could.

It was mid-February in 1994. It was icy and snowy out, but I remember going to the store and buying a primrose for my mom so that she would have some kind of flowers for Valentine's Day.

I remember going home and her speaking to me for the last time. She lived until the morning of Feb. 22. She had stopped talking but was still communicating with her eyes and facial expressions. And those are the images that I remember the most.

What she meant about me keeping her alive was that, during her illness, I propped her up and never really left her side. I was 22 and had left college to care for her two years earlier. When she died, I didn't know how to go through my day because I'd had so many days with her.

In the time leading up to my mom's death there had been an ice storm and the electricity was out. It was so cold.

The morning she died, I remember looking at the clock. It was about 3 a.m. She had a look on her face that I somehow recognized. She wanted to go.

I got my two siblings up and we prayed around her. We said the Rosary, which was her favorite. And we told her it was all right to go. It's been 21 years since she left us. A lot has changed in our family and in the world, but the one thing that has remained constant throughout is that I wish she didn't have to leave us.

Now I can look back at those two years as a caregiver and not fall apart. Although I became a stronger person, I wouldn't wish that kind of experience on anyone. Not the caregiver and not the dying person. My mom had such guilt about the position I was in.

The other thing I often wonder about is, When did her life peak?

In the lives of most dying people there is a point when things are as good as they're going to get. And then it's downhill from there. Looking back, I think I know what that point was for my mom, but when you're in the middle of caretaking, you don't see something like that.

I often wish now that I'd been able to point that moment out to my mom. I wonder if it would have helped. The cards would have been out on the table. Perhaps she would have been less scared. Maybe she would have lived her remaining time differently.

Mom always said she was not afraid to die, just afraid to be sick. Finding that peak moment for people and talking about it openly and often with them could be a game-changer in their medical and palliative care.