Lori Syverson - Diary of a Deathwalker

 

 

I was 47 years old, and I knew in my heart that it was now or never. So, I went over to the kitchen junk drawer and pulled the Yellow Pages out. I flipped the book to the list of hospice organizations, and I started right at the top making phone calls. Aurora Hospice, Brookdale, Compassionate Care. My stomach was in a ball of knots, and what I really wanted was for no one to answer the phone. And on those first three calls, no one did. But I pushed myself to make that next phone call.

 

And that phone call was to Heartland Hospice. After the first ring, a woman answered the phone, and she said, “Heartland Hospice. This is Peggy. How can I help you?” I said, “Hi, Peggy. My name is Lori. I'm really nervous. I don't know if I really want to do this, but I think I'd like to volunteer in hospice.”

 

Well, a month after that phone call, I had completed my training and I was volunteering as a hospice companion. I pushed myself to make those phone calls because at 16 years old, I couldn't get over the death of my grandmother. And I carried that guilt around with me for such a long time. So, here I was, 30 years later, now volunteering as a hospice companion. And I wasn't sure what to do. My family consisted of me, my brother, my mom, my dad, and Mamie, my grandmother. Mamie moved in with my parents before I was born, so I didn't know any other kind of family. She was my rock and my BFF.

 

Then, in 1975, when I was 15, Mamie was diagnosed with cancer. We shared a bedroom together. And one night, I woke to Mamie moaning and groaning in pain. I didn't know what to do, so I did nothing. I remember like it was yesterday. I laid in bed and I pulled the blankets over my head. I was as stiff as a board, and I tried not to breathe so Mamie wouldn't know that I was awake. She stumbled out of bed to wake my parents. While my dad got up, he was in the bathroom getting dressed, mom and Mamie sat in the living room. And I thought, this is my best friend. What I really wanted to do was go in there and give her a big hug and tell her that I loved her. But I didn't. You know what I did? I snuck into the kitchen where I hid underneath the table like a three-year-old playing hide and seek. But I wasn't three. I was 16 years old. And I was old enough to know better. Well, before anybody even knew that I was there, I slithered right back into bed.

 

Mamie died the next day. I wasn't there. I never told her that I loved her. And I never gave her that hug.

 

So here I was, 30 years later, volunteering as a hospice companion. As a companion, you spend time with patients. You listen, maybe you read to them, play cards. But after six months with Heartland, there was still that anchor around my heart. Because I wasn't there for Mamie when she died. And I wondered if there was something else that I could do to not only help other people, but to heal me. So, that's when I became a death walker. As a companion, you help hospice patients on their death journey all the time. But as a death walker, you're even closer to death.

 

You're sitting with patients that are actively dying. They may have only days or hours left. At that point, some people see things. Other people, they can't speak. For others, their breathing has fits and starts. And for some others, their heart gets so weak that it can't pump enough blood to keep the color in their face. [sighs] Believe me, I was way outside of my comfort zone.

 

Alfred was the first person that Peggy assigned to me as a death walker. He was a frail man in his 80s. He was actively dying, and he had no one else. He was the first patient that I sat with by myself without any backup from Heartland Hospice in the room with me. He was living in a nursing home. And when I got there, I walked down the hallway toward his room and I heard whining. I walked a little further. That whining and the distress sounds, they were coming from Alfred's room. I got to his door. It was mostly closed, but it was open just a crack. And then, I froze at Alfred's door the same way I froze in bed with Mamie. And I didn't go in. I was scared to death. I just stood there, wondering what to do. And then, I realized that the reason Peggy asked me to be with Alfred was because he had no one else. 

 

So, I closed my eyes, I took a deep breath, I pushed the door open, and I walked in. There was a metal chair in the corner of the room, so I dragged it across the linoleum floor closer to Alfred's bed. I bent over and I rubbed his arm, and I said, “Hi, Alfred. My name is Lori and I'm going to sit with you for a while tonight. Oh, and Alfred, there's one thing I need to tell you. I'm really new at this whole hospice thing and I really don't know what to do. But don't worry. Everything's going to be okay.” [audience laughter] Well, guess what? I lied to Alfred. Because in my head, I kept thinking, “Holy [beep], what am I doing here? This is crazy.” But you know what? Alfred made it through the night, and so did I. 

 

Peggy called me later the next day to tell me that Alfred had passed away. I was sad, but then I was relieved. Not relieved for me, but relieved for Alfred. Well, after Alfred, Peggy called me two or three times a week looking for assistance, for people to sit with. I couldn't say no, but I was still really nervous. But I felt that I did help Alfred in some small way. So maybe there were others that I could help.

 

Jeff was 53 and he was dying of pancreatic cancer. I had been volunteering with Heartland for 18 months at the time that I met Jeff, and still no one had died on my watch. I know it sounds crazy, but in this mixed-up head of mine, I really wanted to be there when someone died. Because, in my mind, that was a way I could make it up to Mamie. I wasn't there for her, but maybe I could be there for someone else. Well, right from the start, I knew that Jeff would be different. We had an immediate connection. And the other thing different about Jeff was he wasn't ready to die. He was afraid. He was a journalist and he was working on a big story. He was really hoping that he could finish that story before his decline. So, I made a deal with him. “Jeff, if you're able to write the story, I'll do the research for you.” That was our pact.

 

That day, oh my gosh, we talked for hours. We talked about the story, family and friends, his illness, death. And then, we talked about serendipity. And he asked me if I knew what that meant. I said, “Oh, sure. I saw that movie with John Cusack. You wish for something and poof, it automatically appears.” Well, he kind of chuckled. He didn't laugh at me, but he chuckled. And he said for him, serendipity was coming across something meaningful and important when you least expected it. And he said that was me and thanked me for everything that I had done for him.

 

But the reality was Jeff did more for me than I could ever have done for him. Because it was Jeff that made me realize maybe I didn't need to be there at the exact time someone died. Maybe my purpose was just to be there, to connect with people and to help them feel that their life was important, even in those last days. So, Jeff and I decided that we'd get together four days later to work on that story. But three days later, Peggy called. Jeff had passed away. I was devastated because Jeff still had so much more to his story.

 

Lillian was 92 years old, and she had a full head of perfectly coiffed hair even laying in her deathbed. Her daughter lived out of state, and she was doing everything she possibly could to get to Lillian. But in the meantime, I would be one of her death walkers. At the time that I met Lillian, I had been volunteering for three years, and every time I met a patient, I was anxious and nervous. But with Lillian, it was different.

 

I walked into her room, and the shades were pulled up to let in the bright sunshine. Her voice was quiet and raspy, but still so full of life. At the end of the first day that I was with Lillian, she looked at me and said, “Can you please leave the window open before you leave? That way, when I die, I'll be able to get to the other side.” There was no sadness in her voice. It was just contentment. And, boy, I made sure that I left the window open before I left.

 

I came back the next day, and Lillian had declined. The blackout shades were pulled down on the window. The wool blanket that was at the foot of her bed was pulled up and tucked tight around her. The conversation ceased, and her breathing was very heavy. I sat on the tattered orange chair next to her bed, and I put my hand underneath that wool blanket and I held her hand. And I said, “Lillian, everything's going to be okay. Your daughter's almost here.” Then, I leaned in a little closer and I whispered to her, “Lillian, the window is open. When you get to the other side, can you please tell my grandmother, Mamie, that I love her? She's going to be looking for you.”

 

A couple of minutes later, there was one last gasp of breath, and Lillian was gone. I sat there a few minutes longer, quietly, just holding her hand, because I wanted to make sure that Lillian had enough time to get to the window. A couple of weeks later, I got a note in the mail from Lillian's daughter thanking me for being with Lillian when she couldn't be there. But that note was so much more than a thank you. What it really said was, while I couldn't be there for Mamie, I was there for Lillian and everybody else. I hope Mamie would be proud. Thank you.