Power of Those Things Beyond Our Control
When I was 30 years old, my husband died from cancer. We had been mountaineering instructors and best friends. He died one year after his diagnosis – at the age of 35. It was my first real experience with grief and loss, and it changed the direction of my life. Four years later, while working as a journalist, I was asked by a local newspaper to write about the Hospice and interview a woman named Kaye whose husband was dying. This is the story I wrote in 1984. It will be included in my new book I See Your Loved Ones On The Other Side:
The Power of Those Things Beyond Our Control
Gwen is a rock. In the way people have of linking with something in your mind – she is a rock. Not that she is rigid or unyielding, but simply as I watch her walk away from me in hospital corridors I want to run after her and hold on.
Gwen helped my husband die nearly four years ago. We came to her terrified of his cancer but mostly terrified of how we were losing control of our living and of his dying. Gwen got us out of the hospital and home. She taught me to punch long hypodermic needles into his rear, to measure his intake of intravenous fluids and his output of urine and bile. She turned my living room into a hospital, me into a nurse, and put Paul back into control.
Gwen works for the Boulder County Hospice. She is the associate director of nursing and has done this for six years. Though it’s been four long years since Gwen taught me to give a Heprin push in Paul’s TPN line, still when I watch her walk away from me I want to run after her. Still, after all this time.
(Note: Gwen recently came to my book talk in Seattle and was as powerful and beautiful as ever. It made me cry with gratitude to see her again.)
One evening Gwen and I sit in a hospital hallway and talk. I tell her I’m writing a story about the Hospice. Gwen is rugged with dark bushy hair and strong features. Pioneer woman rugged in the way she looks at you – or through you. She doesn’t like to mess around.
Now she looks at me like I’m crazy. Why do you want to write this? She asks me. I’m not sure, so I blabber away about being intrigued with the strength people find when someone they love is dying. And her, I say, I want to understand how people like her can do this for a living. How could she help me hold Paul in my arms as he took his last breath and the same afternoon help three kids watch their mother die.
Gwen should have been an Outward Bound survival instructor. Survival instructors like to yell at people when they’re stuck 200 feet up on a rock cliff and say: “So did you think it would be easy?”
Gwen has simply always known that strength was required. “My husband died in a car accident 10 years ago. For awhile, I quit working for the hospice and worked for a family physician. But it drove me crazy. Here were healthy little kids screaming about a sore toe. I felt like saying – ‘hey, there are people out there dying and you’re worried about your toe?”
In the middle of a crisis, Gwen seems most alive. When the husband is speaking gibberish and slipping further into a coma, and the wife is crying and the kids sitting tightlipped and stone-faced, Gwen eases into action. She knows what must be done and she does it. She speaks about death the way some people discuss dieting.
And yet she is vivacious and laughs and laughs over silly things – like a patient calling her Wendy or a chart being misplaced. But in the same breath, she’ll turn to you and say, “Your husband won’t be leaving the hospital again. You understand that, don’t you? He’s dying now.” Her eyes are soft and she looks like she’s ready to hold you if you fall and that anything you say or do is okay with her. It’s these moments when you want tie a rope around her waist and hang on.
Now Kaye is looking at Gwen that way. I watch Kaye watching Gwen walk down the hospital corridor and wonder if Kaye wants to run after her too. I don’t mention this but I notice that Kaye seems unsteady when she turns her eyes away from Gwen and invites me into her husband’s hospital room.
Kaye and I sit in chairs only inches away from each other and whisper back and forth. I have never met this woman before but Gwen has told her that my husband died of cancer, so she ends most of her sentences with, “…you know that feeling, don’t you?” I try not to look at the tall white bed beside us where her husband lies mostly still, but twitching sometimes, and mumbling words that make no sense.
I keep my eyes on Kaye’s face. Her eyes lock me in. they are large and brown with soft laugh lines around the corners. She tells me immediately that if she and Tom couldn’t laugh they would never have been able to cope. She finds little stories to tell me that crack her up. She leans back in her chair holding her belly and the laugh lines deepen. But these are things that most people would find sad. “Don’t repeat these things,” she tells me. “People would think we’re sick.”
Kaye is in her fifties, but there is no weariness about her. She has a kind of charged nervous energy – ready to spring from her chair at any minute. Her eyes are always on the hospital bed, even when she faces me.
“Today he keeps asking for Matt, our son,” she tells me. I think for a minute that she might cry, but again the eyes lock into mine and hold there for several seconds. Then she looks across the room at her daughter Jane.
Jane, who is 21, is sitting in a chair with a magazine on her lap. She is blonde and pretty and looks like someone who should be going to barbecues and softball games. But she is sitting very still, watching her father. Her eyes seem very liquid and her mouth is one long tight line. When Jane watches her father and her lips tighten, Kaye watches Jane and moves her hands rhythmically in her lap. No one speaks.
Finally someone speaks. Kaye, Jane and I all turn to look at Tom in the bed. He is calling. The words seem unintelligible to me but the gibberish is quite clear to Kaye. Kaye is beside him now leaning down close – her ear beside his lips. “You want Matt? He’ll be here later honey.”
Tom is on his back in the bed. A maze of clear plastic tubing runs from various bottles and containers to connect with him somewhere beneath the sheets. His face is round and swollen; his eyes are dreamy and unfocused. His lips are puffy. He looks nothing like the man Kaye describes to me as the man she married 23 years ago, who was a truck driver for 20 years.
Tom is going to die soon. His cancer was diagnosed two years ago. He has had eight major surgeries in those two years for a brain tumor, lung tumors, spinal tumors and on and on. Now he is paralyzed from the neck down.
He walked away from all the other surgeries, but not this one, not this time,” Kaye tells me. “Every time he gets critical we cry and start to grieve and let him go. And the next day he’s better and back and forth. One part of me says let him go, and the other part says as long as he’s still breathing, there’s hope.”
Kaye has taken care of him for two years, but especially since January when he came home from the last surgery paralyzed. When people tell her they admire her strength and could never do what she is doing she always answers without hesitation, “Yes, you could. You do whatever you must do. And Tom gives me strength.”
This brings back memories. It is June 1980. My living room has been transformed. Where once books were lined neatly along the shelves, now there are boxes of syringes, needles, morphine vials and plastic IV tubing. Inside my refrigerator where once there were tortillas, yogurt, eggs, salad and beer, now there are piles of clear plastic bags filled with IV solution and bright yellow bags of liquid food called TPN that has become my husband’s baked chicken and mashed potatoes.
My husband, who is 35 and only two years ago ran the Las Vegas marathon, now is a mass of bones huddled long and lean on the bed that has become the center of the living room. The bones define his face as chiseled as a monk who has fasted for years. His gaze is far away and vacant.
He whispers gibberish and immediately I understand that he wants a sip of water and that his canister of bright green bile pumped from his stomach through a long plastic tube, needs to be emptied. I give him the water and begin to empty the bile. This has become ordinary stuff – the way mothers change diapers. I have no feelings at all as I watch the green liquid disappear down the drain.
My friend Merrin is in the kitchen. She comes periodically and cleans with more ferocity than a brigade of magic maids. My dirty counters become the target for her anger – and mine as well. The house seems lighter, sillier when she is finished with the sponge.
Now she stops with a sponge in one hand and the other dripping suds on the freshly mopped floor and says to me, “I don’t see how you do it. I could never do it.”
It seems an odd thing to say. I’ve never questioned not doing it. Is there a question? “Yes, you could Merrin. You do what you have to do. Paul gives me strength.”
(Note: Twenty five years after my husband died, Merrin spent a year caring for her 30-year life partner and best friend who died in her arms from pancreatic cancer.)
Now Merrin turns away to wipe crumbs from the toaster. She feels she has been lied to. It seems the most meaningless, empty answer in the world. How does strength come from a dying person who speaks only in whispers and needs a sip of water, a clean sheet, a pain shot, a bath, to sit up, to turn over, to lie down, to use the bed pan? The wife-mother-father-husband-child learns to jump at a sigh, to understand gibberish, to have a second sense about what is needed. Is it so wonderful to be needed? Is it that simple?
Kaye gives no answers to this. To her it is not a question. I sit in her hospital room and watch her checking tubes, temperatures, lowering the bed, adjusting the pillows, phoning home to check on the kids, whispering to Matt to please come to the hospital soon because dad is asking for him.
Kaye and I have iced tea in the basement cafeteria. We talk for 30 or 40 minutes. She tells me that not many families are given the opportunity to mend fences. She speaks about family tensions and adolescent problems and the years when Jane and her father never spoke to one another. She tells me she is so relieved that they’ve had the time to make peace with one another – and with God.
I tell Kaye about the time Paul woke me up every 15 minutes because the tube leaked or he needed a shot or the sheets had to be changed because bile had leaked on them. I tell her how I screamed and cried that night and threw a glass against the wall and told Paul I hated him for being sick. She looks at me like we are blood kin and nods and nods her head.
“Tom knows I’ve been angry at him,” she tells me. “And he’s even pushed me sometimes. When he was home, that cow bell he had – he’d ring it every couple of minutes.”
She looks at her watch. It’s been too long. But I have one more question. “What’s been the hardest?”
She is quiet for awhile then she says softly, “My kids.” For a second I think she will stop now and decide I’ve invaded too much. But after awhile she looks at me again, “When Matt says – Why my dad?”
Now we’ve crossed the line. Her eyes fill up and she looks away. Both of us sit very still for several minutes. I suddenly feel that the room is too small and notice that it seems difficult to breathe in here. I can hear Matt’s voice – Why my dad? Why my husband? I contemplate running for the door, but I sit still. She waits.
Finally, she continues. “But when I ask Matt if he’d wish this on anyone else, after awhile he says ‘No, I couldn’t wish it on anybody else. We have our belief in God to give us strength and not everybody has that.”
I am relieved that she believes in God, that something takes away her pain. I am breathing again and the room seems larger and perhaps I’ll have another iced tea. She gets one too and tells me that she gets a lot of support from her bible study group.
Then she says: “Somebody once told me that my faith in God wasn’t great enough or my husband would be healed.” She just stares at me for a long time like there is a mutual understanding between us of what garbage this is because my husband has died too. She continues, “What do they think? That people will live to be 500 years old if their faith is strong enough?” For several seconds we simply stare across the empty table at one another, not knowing what else to say.
In the elevator, Kaye tells me how good it is to talk to someone who understands. I am wishing I didn’t understand. Tonight I must go home to my empty apartment and make words out of this.
In the room again, Tom wants water, a pain shot, Matt, a fig bar. I step out of the room and sit in the hallway. There are four Hospice rooms at the end of this corridor in Boulder Community Hospital. Gwen has worked hard to get these rooms in the hospital. Until recently, the Boulder Hospice has only offered home care to its patients. These rooms have been needed for a long time.
Sitting here in this corridor is like being in another world. A woman comes out of one room and reports on her husband’s swallowing a sip of chocolate ice cream as if he had just won the Boston Marathon. Finding just the right position for his pillow assumes the same importance as nuclear arms negotiations. A 70-year-old woman comes to her door and asks for a reading light so she can read while her 50-year-old daughter, who is dying from breast cancer, sleeps.
In this other world, I sit taking notes, watching visitors come and go, picking up People Magazine and wondering if I can write this story.
Gwen, my former Hospice nurse, is there again. I hold on to her with my eyes. She lets me. She sits down across from me and we talk. She tells me about her new baby, Cara, and what an “intense kid” she is with large eyes and a piercing stare that sometimes makes people uneasy. I have no doubts that she is just that way. I imagine what it would be like to have a mother like Gwen. I ask Gwen if she will always be able to do this – to work with the dying. She laughs for a long time over this. “I want to take up fiber weaving,” she says. We both laugh now, picturing Gwen spending her days in a quiet studio weaving to soft classical music.
“No, I guess what keeps me doing this is my awe of the way things unfold. Like the other night when I was working here and a man died while I was with him. You feel such awe – that moment is so powerful. I can only take a patient so far and then they do the rest. The power of those things beyond our control is amazing.”
I know that moment she is talking about. I remember holding Paul in my arms while he took his last breath. I remember the crazy, almost giddy way I felt the moment his spirit left his body and he was free. It was a feeling I couldn’t explain to anyone but it made me smile for weeks, looking rather drugged and vacant. My friends thought I was on Valium. But the feeling came from somewhere else. I can’t begin to explain it.
A woman comes out of a Hospice room and asks Gwen to come help her turn her husband on his side. Gwen disappears into the room and a new Hospice nurse sits down beside me to go over her charts.
At first we don’t speak and then after awhile she introduces herself. She tells me that when she started nursing she loved to work on the Oncology unit because of the level of involvement with the patient. “We worked with them physically, emotionally, spiritually. It was so much more intense than the other wards. So it was a natural progression to come to work for Hospice.”
After awhile into the conversation she mentions that she has had cancer twice. “This last summer when I lost a kidney, I decided I’d quit working for the Hospice because it was too difficult. But a little while ago they called me up and asked if I would take on just one patient. And I did. And I was fine. So I guess I’m healed and ready to give back.”
She is smiling so vivaciously while she says this that I feel out of breath – like I’ve been kicked in the gut. I look down at the People Magazine on my lap and want to read about the mermaid who starred in “Splash.” But I finally look at her and tell her I admire her for being able to work with dying patients when it must touch on all of her fears of dying. “Exactly,” she says. “But it inspires me. I see how much these families pull together to get each other through and I see how much love this brings out in people and that gives me courage. It makes me feel stronger.”
Several days pass. I go back to the hospital. Kaye and a Hospice nurse are turning Tom on his side helping him to cough, straightening his bed sheets. I walk in and sit down. Kaye sits beside me. “I’m so glad you came back. I wanted to tell you how much your questions made me think. I thought I was prepared for Tom’s dying but it hit me when I went home that night. For two years, my life has centered on Tom. I’ve felt needed and busy and knew what to do. When he dies, I’ll have to face the world again – by myself. I’ll have to think about me again. And that scares me. And the kids too. Even now, they have a daddy, no matter what condition he’s in. But when he’s gone, it will be different. No matter how you prepare yourself there’s going to be that crash.”
She tells me about the questions she has now. What is the line, she asks me, of prolonging a life. She says that Tom asked the nurse for a sharp knife to cut away the tubes. This has made Kaye wonder if IV lines could be prolonging his suffering. She wonders if giving him antibiotics for pneumonia was the wrong thing to do. Look at him, she says. He’s so tired. When she is just about to cry she looks away.
I tell her about how Paul asked me to give him a morphine overdose because he was ready to die. “Could you do it?” she asks me. I tell her yes – out of love. She stares at me for a long time.
(Note: After a year of terrible suffering, Paul ended up back in the hospital throwing up blood and told me it was time to let him go. I gave Paul the prescribed amount of morphine as often as was legally prescribed. His doctors had counseled me that because Paul was so thin and weak the morphine would quickly build up in his system and kill him. This was the only way to do what Paul had asked. I also took away the IV tubes that were giving him fluids.)
Now Kaye’s son Matt comes into the room. He’s a paramedic ambulance driver and he fiddles with the bottles and tubes that lead to his father. He sits down and he and his mother talk across me about their pet boa constrictor, their hamsters, gerbils, dogs, cats, pet rats and parakeets. These stories make them both laugh and laugh. They tell me about the time the boa constrictor got caught in the lounge chair and the time the bird landed on the cat’s head. We laugh and laugh, and this time when I leave the hospital I am forgetting about the man huddled in the tall white bed and giggling about the boa constrictor.
A couple of days pass, and I call Kaye. She tells me she’s made the decision to take away all of Tom’s IV tubes. “I did some deep soul searching,” she tells me. “There’s a lot of security for me in hanging on to him. I know what my days are going to be. I don’t have to face the world.”
Kaye tells me that her son Matt, the paramedic, is having a hard time with this decision. “He’s in the life-saving business. He told me that we don’t have the right to make that choice for anyone. But I told Matt that his dad made that choice a long time ago. The one thing Tom is not afraid of is dying. He’s afraid of pain, but not of dying. And he’s in so much pain now. So I told Matt we couldn’t keep Tom alive for us. We have to let him go – out of love. I never thought I’d have to make this decision.”
The hospice nurse who is in charge of Tom’s case is named Heather. Heather spends a lot of time now comforting Kaye. They talk about pain control and how Tom will finally die. And how long it could take. Without the tubes to hydrate and nourish Tom, he quickly worsens.
On Easter Sunday, Tom calls for his tennis shoes, his car keys, his jacket. “I’m ready to leave,” he says. That night he has convulsions and slips deeper into a coma.
Monday night, Kaye and I stay up late whispering stories back and forth. She tells me about meeting Tom and how he would come and visit with her folks, waiting for her to come home. But when she would get there, he was so shy that he’d get up and leave without speaking to her. “I knew he was there to see me. He was so dumb,” she says. This makes her laugh and shake her head.
“I always knew I’d have to get married fast,” she says. “If it was going to happen it would have to happen fast or I’d talk myself out of it. Tom and I started going out in January. We were married in April.”
The next evening, the children come and spend time alone in the room with Tom. Kaye wants to be sure that each child has a chance to say good-bye. He doesn’t respond to anyone. His breathing is very labored and hard to listen to.
After only a few minutes with his father, Matt, the paramedic, comes out of the room, angry. “I can’t take this. I can’t stand to see him struggling for breath. Can’t we give him oxygen?”
My friend and Hospice nurse Gwen appears. She and Kaye talk to Matt about this. “Yes, we can give him oxygen, but it won’t help.” Matt knows that. He goes into an empty room and shuts the door. Kaye leans against a wall in the hallway and says, “Finally, Matt is breaking down. I wondered when he’d let it go. He needs to do this.”
Another Hospice nurse is working that night. She goes into the room with Matt and they talk for a long time about how difficult this is for Matt to watch his father suffer and not be able to help. “I’m used to saving lives,” says Matt. “And this is my father, and I can’t do anything.”
Jane spends time in the room with her father. She comes out after nearly an hour, crying. “He said he loved me, Mom.” It’s the first response he’s given to anyone in days.
By noon the next day, nothing has changed. Kaye is sitting by the bed rubbing his forehead. She looks tired. She whispers to Tom, “It’s time to let go honey. We’re ready. You don’t have to fight anymore.”
She looks at me. “I wish he would quit struggling and give up. He’s such a fighter.” But the labored breathing continues, without change.
We are both sitting in the room talking one hour later when it does change. He takes 15 short breaths then does not breathe for 15 seconds. Kaye counts the seconds on the large clock on the wall beside the bed. “That was 15,” she says. “He’s going now.”
Kaye calls Heather, the hospice nurse, into the room. Heather checks pulses and listens to his breathing. She tells Kaye that it won’t be long. Then she goes to find Matt and Jane.
Now he breathes 18 times and doesn’t breathe for 20 seconds. Kaye is watching the clock. As each second without breath passes, the corners of her mouth quiver. She turns to Tom. She rubs his forehead. She doesn’t cry.
The next time, he doesn’t breathe for 25 seconds. Jane and Matt sit beside the bed. For several minutes, the same breathing pattern continues. Matt stands up and says, “He’ll fight it to the end, won’t he?” and leaves the room. He paces in the hallway. He comes back and sits on the floor at the foot of the bed.
Jane leans over her father. She rubs his chest and shoulders and strokes his hair. Tears drip onto his pillow. No one speaks. Now the breathing is very shallow, barely there. But it is rough and gurgly and hard to listen to. Kaye looks down at the floor.
Then it slows. Then it is no more. The room is still. Heather takes his pulse, “He’s gone now, Kaye.”
The family holds each other. Kaye wraps her arms around Heather and thanks her. People cry, especially Matt. “It’s hard to let him go, mom.”
Kaye holds him in the hallway, “I know honey, I know. But he’s not in pain anymore. It’s over.”
This is an excerpt from my newest book: I See Your Loved Ones On The Other Side (St. Martin’s Press).