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Companions for the Passage
Stories of the Intimate Privilege of Accompanying the Dying
By MARJORIE RYERSON University of Michigan Press
Copyright © 2005 University of Michigan
All right reserved. ISBN: 978-0-472-03078-1
Chapter One Marlene Petrucci * * *
Marlene Petrucci, an R.N., was with her mother Mary, also an R.N., through the months of her mother's illness from cancer as well as at the time of her death. A hospital social worker originally introduced me to Marlene, telling me that Marlene's story was remarkable. Indeed, I found Marlene herself remarkable, too. Her training as a nurse had prepared her for her mother's illness, but it was Marlene's openness of heart that allowed her to embrace the experience of losing the person she loved most in the world.
My mother, Mary, was sixty-seven when she was diagnosed with cancer. She knew that she had cancer long before it was diagnosed. She was an oncology nurse at our local hospital. She started the oncology program there, which is ironic. Being a nurse, she knew her own body; she knew something was very wrong. I had noticed some mental changes in her, and being a nurse myself, I thought, "Oh, maybe she's having little strokes, little TIAs." But being her daughter, I said, "This can't be happening to my mother."
We went to many different doctors together. The doctors said, "The lump on your skull is just old-age bone growth, Mary." "The pain in your joints is just arthritis." "You're just getting old." She wasn't buying it. She took me down the street to Pleasant View Cemetery. She showed me where she wanted to be buried. She said, "I have cancer, and I'm going to die."
I was thinking, Mom! You look healthy. You look good. You're walking every day. You look good. What are you talking about? But she was finally diagnosed. By that time, the cancer had metastasized from her lungs-she had it in both lungs, throughout all of her lung fields-to almost every bone in her body. It was even in her sinuses. The cancer was everywhere but below her knees and below her elbows. Doctors even suspected the cancer had spread to her brain as well. They said she could expect to live about four months.
Being the person that she was, she said, "I have always told my patients to go ahead and do chemotherapy because it can decrease the pain." And she was in a lot of pain. So she decided to do chemotherapy, and it did help with her pain, it did help extend her life. She lived a total of nine months from the time she was diagnosed. But it was hard; my mom was my best friend. We used to do so much together. She would come to my house for dinner several times a week. We'd go shopping. We'd go out for meals. We did a lot together. And for those nine months, my sister and I took care of her.
Actually, it was a great nine months in many respects. I say to some of my patients whose family members have contracted cancer, "You know, the time can really be a gift to you. It's kind of like finding a pearl within an oyster, what you can get out of it."
In those months, my mom and I had tremendous talks. We shared a lot of feelings, very honest, intimate feelings. My mother would say to me, "I'm really going to miss spring. I'll miss the mountains and the sky and the sunshine." I was able to say to her, "I'm proud of what you have done. I'm proud of you as a mom for what you have accomplished." All those little things are important to say.
When you stop to look at it, we all go through day-to-day chores and work and lives, and we rarely stop to say to the people in our lives just what they mean to us. We don't notice all the little things that we should appreciate. When you're with somebody who's ill and you don't know how much time she has, it can bring meaningful, very real rewards. If you use that time well, you can live-in those months-years!
Of course my mother did not want to die. She fought it all the way and was in denial for much of that time. She wasn't going to die. She was going to beat this thing, even though being a nurse, she knew otherwise. So she wouldn't listen to the doctors when they would say, "The X-rays look worse. The cancer has spread. We need to try this. We need to do that." So I carried a burden that way, if you can call it a burden. It was a time of a lot of joy and a lot of living as well as a lot of suffering. One of her oncologists said to me, "Probably you are suffering more than she is with this, just trying to deal with her pain, her emotions, her knowing that she's going to die." Yes, it was hard, but it wasn't difficult in the sense that I begrudged her. In fact, taking care of my mom was wonderful in her last few weeks, especially the last week.
Death is something we all go through. We all have to exit the same door. My mother finally came to terms with the fact that this was it. Her own body was failing. She was having a very difficult time breathing. Her anxiety over not being able to breathe was just terrible. We couldn't get her undressed. Here was this woman who was just so into how she looked. Goodness, if there was a spot on her shirt, she would have to change it. And we couldn't get her out of her own clothes.
When my mom took a severe turn for the worse, she'd been on oxygen for quite a while. Her physical needs had increased to the point that we couldn't take care of her at home, so we brought her in to the hospital.
In her final three weeks in the hospital, we would sit and watch the birds come to the feeder outside the window. Mom believed that people who had died watched over us, that their spirits were really never dead. Mom had been good friends with Phil, the hospital's CEO. They had worked together. She had helped take care of Phil when he was dying from cancer. She recounted to me a conversation with Phil in which he said that he loved birds, especially cardinals. He told her how infrequently he could get red cardinals to come visit. So my mother felt that birds at her feeder were from Phil. To her, the birds were something spiritual. One day a red cardinal came to the feeder, and she said, "Oh look, isn't that beautiful? That's from Phil."
Her close friends came in to the hospital to visit her, and she began saying her good-byes. That was probably one of the hardest things to see and to hear. She finally said-and I think this is very hard for most people who are facing death-"I am ready."
The last five days were very much a blur in some ways. We started her on a morphine drip, trying to make her comfortable. We would give her whatever she wanted. She was pretty conscious up until the last couple of days. She never, unfortunately, got to a point where she was comfortable.
In those final days, my mother would talk out loud from the place that she was in, wherever that place was. I don't know where people go when they get to that place between consciousness and unconsciousness. I've pondered that a lot. I don't know whether people go back in time to when they were children. I don't know whether they go to a place that we are just not aware of, somewhere between earth and whatever else is out there after life. There's just this time period in which I know that hearing is the last sense to go, or so they say, medically. My mother could hear the outside world, but she herself was in a different place. She oftentimes would not respond to questions. But I sat with her. I was there twenty-four hours a day, and we talked, or I talked with her and lay on her bed, beside her, and thought about how the tables had turned. I found that was a very interesting thought-in just the feelings that it brought-that, in death, we all change. She brought me into this world. She gave me life. She took care of me and raised me, and here I was, helping her to die, doing all the things that she used to do for me when I was a child. And that was hard. It was hard because I wanted her to hold me, to simply be a mother for one last time. And yet, through all that, those needs of mine had to be placed aside.
Instead, I would be the one holding her hand or rubbing her back or rubbing her shoulder or putting a cold facecloth on her. I would be the one trying to give her little sips of water to moisten her mouth. It was very hard to realize that this person whom you have known ever since your existence started on the face of this earth was, in a short period of time, never going to be here. I could not fathom that. I could not comprehend life-the world-without the presence of this woman in it.
My grandmother, my mom's mother, had been dead for fourteen years. My mother would call out to her, asking her for water or saying, "Mom. Mom. I can't wake up. Help me wake up." Articulately. Very clearly. She was talking to her mother, as if her mother were present. It was extremely painful to hear. I think it was painful for her, too, because I felt that maybe she wasn't ready to die. Maybe her saying to her mother, "Mom, I can't wake up," was actually her not wanting to pass on.
My mother's goal throughout her illness was always to make it to a holiday, to make it to a birthday or something like that. Her final goal was to live until Easter. She had been born on Easter and she wanted to make it until Easter. I would say to her, "Mom, it's Wednesday. Easter's four days away." And she would yell out, "Easter, Easter." It was very interesting to hear sometimes what she would fixate on and what she would hear and respond to.
I think many people choose the time of their passing, but not all people. My mother could have held on longer. She could have died earlier. When she finally passed, it was beautiful in the sense that my sister was there, my husband was there, and a lot of her friends from the hospital with whom she had worked were there, too. We were all sitting on her bed or standing beside her bed and we were telling stories of my mother working at the hospital. We were sharing the funny stories of things that had happened, such as the day they were trying to put a Foley catheter in a patient and this went wrong and that went wrong. We were telling the stories and everybody was laughing and that's when she passed away. It wasn't a time when people were crying. It wasn't a time when it was silent. That was the time she chose. It just fit in with her personality. She always loved to laugh and loved to tell funny stories and jokes. That was the atmosphere in which she really loved to be. That's the way she wanted it to happen, whether it was for her or for us. And she had made it. She had made it to Easter.
Her burial had to be postponed, due to our great New England springs where you can't get up to the cemetery because it's all muddy and covered in snow. So instead, we buried my mother in May. It was May 10, the day before Mother's Day. It was kind of a rainy day, and we buried her half a mile from my house, in Pleasant View Cemetery. The day that we buried her, it got very cold in the evening. My husband and I decided to drive up to the cemetery to put a cover over the flowers at her grave. We got out of the front door of the house, and there was this bird. You're not going to believe this story. There was this bird. We'd never heard it before. We'd never seen it. And to this day, we've never seen this bird since.
The bird's cry sounded like something between an owl and a loon, a very distinct call. And we remarked, "I wonder what kind of bird that is. I've never heard it." We went up to the cemetery, a half mile away, and the same bird was at the cemetery. It had followed us. The cemetery gate was locked at the bottom so we had to walk up. We covered all the flowers to protect them from frost and walked down again. The bird stayed above us, calling. I said, "Let's get into the van. Lock the doors as quick as we can." It really shook me. We got back down to the house, and the bird was at the house. It had followed us home.
The bird stayed for about three weeks, maybe a month. It only appeared in the very late evening, in the dusk of the evening, when it was too dark for us to see it. The bird was always flying around in the air above us. Sometimes it would be down the road, but we would hear it from the house. It would be flying around, but we never could see it. We never saw this bird! The bird stayed around for maybe three weeks, maybe a month. And then after that, it left. It disappeared. I felt that it was a kind of symbol; my mother was released from the world of her suffering. By burying her, she was finally free of this world.
Mother's Day this year, May 10, was exactly the same day and the same month we buried her, one year ago. On this Mother's Day, my husband and I had been outside all day long. That evening, we drove to a city, forty miles from here, to pick up my husband's teenage son. We got back home about 8:30-8:45 in the evening. We stepped out of the van, and the bird was back, crying above us in the darkness. My husband grabbed me. He said, "The BIRD!" And I said, "The BIRD!" I got goose bumps. I could feel the hair rising on my arms.
Just like the year before, we couldn't see the bird. We never saw it. It was flying around and it was calling. And then it left. It was only there that night, and we haven't heard it since. People can say what they want. My husband, who does not believe in anything like that, was even struck by the experience of it. The first night we heard it, the night of the burial, the bird's presence was frightening. But when it came back on Mother's Day this year, it made me cry.
I know it's corny, but I can't help but feel that in some way, somehow, that bird is a gesture from her. I think her whole death brought me the sense that there's something much greater out there than what we feel or even than we think is out there. I believe that the whole human spirit is so much stronger than we know. I just cannot put it into words.
I have been with several people when they died, the moment that they've died, and I've been with people who have died since my mom's passing. And you know, you know the moment that they die, especially with my mom. I knew the exact second that she passed. Medically, I can say, "Oh yeah, there are color changes. There are temperature changes. There are little things like that." But there's something deeper than that. There's something-the soul, the spirit. It's gone. You can just tell. I think one of the biggest things in death is that you can really feel the absence. And it's not an absence of life. It's an absence of-I don't know what. I've never been able to find the words for it. There is a housing that is left, a shell, the house that kept the soul, that kept the spirit, and you can just feel that the spirit is gone. It not just that the life is gone.
There is certainly a part of me that is so different now that I can only say is influenced by my mother, by her death. Maybe it is that I've taken on a part of her. I don't know. Her death has been the saddest thing that I have ever experienced. The grief, at times, is almost unbearable, but going through her death with her has given me so much insight and understanding. It has profoundly changed my life and how I think. I'm now trying to enjoy life, trying to do everything that I can, so that I will never look back and say, "Oh, my God, I wasted my life. I'm facing what my mother faced, and all I did was work." So I changed to part time at work; I work two twelve-hour shifts a week. That's a huge change. I feel what I give my patients is so much deeper than where I was and what I could give before.
For my patients who have their spouse, their mother, their father diagnosed with cancer, or even when the patients themselves are, I've shared my experiences with them. They have asked me questions, and I've shared with them some of the details of my mother's illness and what went on between my mother and me. There's something that's deeper in me now. It's not nursing, it's caring. It's sharing, and on a much, much deeper level. After something like this, you're in tune with a whole different part of yourself, of life, and of everything.
Through her illness, through everything, it seemed that my mom's whole life changed. Here was somebody who had been unhappily married for years and who had suffered emotionally with that, even after her divorce. And finally, she became like a flower-you plant it and you simply watch it grow. She was like a child again. It was like she had been reborn. She just blossomed.
She started the cancer center, and she just loved it; she loved her patients. She started doing all sorts of things that she loved and found interesting. She became a whole new person in the span of eight or ten years. It was so sad to see that life that she had, that was so perfect for her, be shortened by this illness.
She would ask, "Why? Why me?" She was a very strong, devoted Catholic and certainly believed in God, though she doubted her religion toward the end. She had led her life by the Bible. She was human; she had made mistakes, but she had led a good life. She had helped others. And she wondered why God was taking it away from her when she had finally found a life that she loved so much. She wanted so very much to live. How could anything take that away from her?
(Continues...)
Excerpted from Companions for the Passage by MARJORIE RYERSON
Copyright © 2005 by University of Michigan . Excerpted by permission.
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