author, journalist, essayist
By Tracy Rasmussen
For much of the last week Ed had used his hands to say a word that was too difficult to speak: goodbye.
For days, as he lay in a hospital bed in his living room, he had pulled his loved ones into long, strong embraces that would last them a lifetime, because Ed knew his lifetime was ending.
And now, minutes after Ed’s death, those hands lay limp and gentle on his chest and those people whom he had hugged so intensely – his wife, his daughters, his pastor, his nurse, his aide – encircle him with their own love, join their own hands and give thanks to God, through grief and somber joy, that his suffering has ended.
It is a moment of serenity amid sorrow; a moment where the relentless ravages of dying are obscured by the comforting shoulders of acceptance.
It is a holy moment, for sure.
It is also a hospice moment. And in the two months of Ed’s dying there were many of them.
Ed’s family knew there was something wrong early in the year. Although he was nearly 80 with bypass surgery and a bleeding ulcer in his past, Ed was strong and sure of himself as he navigated his huge motor home to and from Florida every year.
This year, though, eldest daughter Sarah Jane knew something was wrong.
“He didn’t sound like Dad,” she says. “And so we (she and her friend Harold) decided to go down to Florida and drive the motor home up with him (to Elverson.) We let him drive at first, but the first time he ran a stop sign we took over and he slept most of the way home.”
A doctor confirmed a brain tumor and treatment began.
“Oh, we really thought that treatment was a lifesaver,” says Mary, who would have celebrated her 59th wedding anniversary with Ed on Wednesday. “He was his old self in no time.”
In the late June, though, Ed started to bleed internally as a side effect of the steroids he was talking.
“I wouldn’t want to go through that again,” Ed says. “Never again.”
“He was lying on the floor in pain and told us later that he really thought he was dying then,” Mary says. “He said he was already in orbit.”
Further diagnosis revealed more devastating news: a second brain tumor was growing on the brain stem. The tumor was inoperable. Ed could not tolerate treatment. Doctors told him there was nothing more they could do for him.
All that remained was hospice.
Contrary to popular belief hospice is as much about living as it is about dying. The emphasis of care simply – or not so simply – shifts from cure to comfort.
It is a daunting task to live fully until death. It’s a task that is nearly impossible when a slow and terminal disease quickly strips patients of dignity. There are catheters and urine bags, bedpans and vomit. There are tears and pain, frustration and bitterness.
A slow death – and Ed was well aware that he was dying slowly – is a battle between the spirit that will soon be released and the body that erodes into uselessness. The job of the hospice team is to bolster the spirit one heartbeat longer than the disease’s progression.
“When they told us about hospice, we told them we know a hospice nurse,” Mary says. “And that’s how Eddie came to us.”
Eddie is Edwina Stoltzfus, a hospice nurse with the Berks Visiting Nurse Association. She is a petite woman who is at once serene and energetic, using instinct and education to guide her through the care of her patients.
“I tell them I’ll laugh with them, cry with them or pray with them,” she says. “Whatever works for them.”
By the time she pronounces Ed dead at 11:50 p.m. on Aug. 28, caregivers have done all three.
It is very early in Ed’s hospice care that he realizes the magnitude of the struggle ahead.
The hospital bed is delivered and placed in the living room, tucked into a corner next to a bookcase that is filled with knickknacks and comforting family photos.
And oxygen tank growls gently, day in and day out.
A commode is placed bedside.
At first it’s as if nothing really has changed. A huge family picnic has some of his 15 great grandchildren playing on the hospital bed. Ed is sleeping well and eating. The sense of humor that follows him to his grave is dry and ready. Ed doesn’t say much. But much of what he says is funny.
He is unsteady on his feet, but he can sit in a wheelchair and go outside.
This may not be so bad.
But the first hospice hurdle comes shortly after the family picnic when Ed, who has become increasingly incontinent, must be catheterized because adult diapers are no longer effective.
It’s the first physical sign that he’s failing. And he doesn’t like it.
All he wants to do is get out of bed. And late one night, just a few days after he’s catheterized, he makes a break for it.
And he falls.
Mary sees the cut on his knee and figures out what has happened, but Ed doesn’t tell her about it. He tells Edwina.
“I saw the mark on his knee and asked him about it,” Edwina says. “He told me right away. But he’s not going to tell Mary. That’s his way of protecting her.”
“He doesn’t want to upset me,” Mary says.
The lesson learned is invaluable. Edwina will be a liaison between the couple, speaking for Ed when he can’t bear to speak for himself. Mary, in turn, stands guard over her husband, watching for even minute changes she’ll ask Edwina about.
His breath is getting ragged. He’s sleeping longer. His stomach hurts.
“He’s always been a better listener than a talker,” Mary says. “I guess that’s the way this will be.”
Mary, nearly 80, will be Ed’s primary caregiver (home health aides are available for private hire) for the next two months. Edwina is as much interested in her care as she is in Ed’s.
She spends much of her visits (two scheduled per week and many more unscheduled) talking to Mary about changes in Ed’s behavior, eating, sleeping, pain level.
She asks Ed the same questions. Not surprisingly the answers aren’t always the same.
Ed doesn’t complain. Not to Mary. Not to Edwina. Not to anyone.
But the illness is trying his patience. He wants to go outside. He wants to get up and walk around. He wants to go to Harrisburg and buy a new motor home.
But instead, he’s tethered to a bed by a catheter, waiting for Edwina to arrive on the next visit.
“Edwina’s the one with all the answers,” he says. “She knows it all.”
It takes a few weeks for the quilting frame that fills an entire room in Ed and Mary’s house to be put together, and another few days for a colorful wedding-ring style quilt to be stretched across it.
The process is finished not a moment to soon.
“I couldn’t believe it when she told me it had been a month since she’d quilted anything,’ says daughter Doris, who has taken time off from her work to help her mother care for her father. “It’s her therapy.”
While Ed sleeps Mary quilts. She pushes the needle quickly and smoothly through several layers of fabric while her ears stay open for sounds from the living room. A cough. A groan. A moan. By this time Mary has heard it all and the needle barely pauses until she hears Ed cough. And cough again.
“Oh dear,” Mary says waiting.
But Ed falls back to sleep and she goes back to the quilting. She has said she was prepared to move Ed to Tel Hai Nursing Home in Honeybrook, Chester County, if it would make him feel better.
“I really want to keep him here, because I’d miss him if we had to put him in Tel Hai,” Mary says. “Right now he’s no trouble at all for me. But I don’t want him to suffer.”
Over the next few weeks Mary comes to realize the material of Ed’s suffering is much like the fabric of the quilt she stitches together: The beauty comes only after all the layers have been pierced and patched into something entirely new.
And for Ed that means taking advantage of the moments between the suffering…
Holding Sarah Jane’s hand and retelling the stories of his days as trucker. Lunch hours when daughter Lois arrives to lie next to him in his hospital bed while he drifts in and out of sleep. The sound of Doris and Bernadette’s voices as they talk to their mother in the kitchen. A visit with his friend Mark Stoll, whom he has known nearly half his life. His friend and pastor from Hopewell Mennonite Church praying at his bedside.
As the days pass and the quilt on the frame gets smaller and smaller as the frame is rolled up, Ed takes turn after turn for the worse.
Yet whenever anyone visits his eyes light up and he holds out a hand for them to take. Bernadette has been watching her father for weeks as a steady stream of visitors sits by his bedside.
“I know what’s going to happen,” she says. “But he’s just not ready to go yet.”
Letting go is the antithesis of the habit of living. The dance of breath and heartbeat is choreographed so sublimely that humans aren’t even aware of it.
Until you start counting the breaths of a man who is dying.
Mary listens for Ed’s breathing all the time now. Morning. Night.
He stopped eating almost five weeks earlier. He stopped taking water a few days after that. Once in a while he’ll suck on an ice cube or a mouth swab, but mostly he lies in his hospital bed watching the world dwindle with the same kind eyes of his youth.
Any liquid at all sends his stomach into spasms and he vomits.
Mary marvels that a person can live so long without food or water.
“The longest I’ve ever heard of was nine weeks,” she says. “Nine weeks.”
Edwina has given Mary a kit of medications for pain, anxiety, nausea and sleep, and Mary administers them between Edwina’s visits. Some days Mary is unsure of what Ed needs because he is finding it more difficult to communicate.
But they get through because, as Mary says, after nearly 60 years, you know what a person wants. And Edwina is available at the dial of a phone.
Ed may not be able to speak his feelings, but he does know what is happening to him. The mind that was predicted to grow foggy and comatose is still sharp and witty.
Edwina asks if he knows what is happening to him and he responds that he’s dying. Then he adds: slowly.
Both Mary and Ed have a profound faith. Mary rises every day at 6 to spend an hour in devotions, reading the Bible. Ed delivered hundreds of Bibles as a Gideon. They have been active in churches in both Sebring and Elverson. Edwina says that makes hospice’s job easier.
“Some people wait until the end of their life before they really think about God,” she says.
For them, hospice has a chaplain to make visits and prepare the way.
Ed and Mary’s pastors and church friends visit regularly, call and send prayers. They know Jesus already. Ed wouldn’t mind waiting a few more years to meet him, though.
Even though he’s prepared and his faith unshakable, there are tears in Ed’s eyes when he thinks about passing from this life. A man who has shed no tears from physical pain and relentless vomiting weeps at the thought of leaving his family. Eighty years is not long enough where there are only two weeks left.
So he clings tot what he has. Edwina cares for his physical needs as the vomiting gets worse. She looks for ways to stop it and that works for a few days. Then she looks for ways to make him comfortable between the retching. She suggests does of morphine to relax him, anxiety medication to soothe him.
Edwina knows how close to the edge he is. But he’s not ready to fly yet.
Mary is sleeping for the first time in days. An aide, Danielle Henkel, has begun coming in at night. While Mary sleeps, Danielle bathes Ed and reads to him.
“My head was getting so tight I couldn’t think,” Mary says as she quilts. “I had to get someone in here at night because he was calling for me all the time.”
The quilt is down to one small strip now, as Mary bends over it.
“I know it sounds terrible to pray for someone to die, but we are,” she says softly. “He’s suffering so.”
She looks up briefly from the quilt and there are tears locked in her eyes and in her voice.
“Every day now I think it can’t get any worse, but it does,” she says.
Mary says she doesn’t know how Ed is hanging on or why. Barry Siegal, a hospice social worker, had helped Mary shape the words she could use to talk to him about his death, to make him feel comfortable enough to die.
Mary is frightened he will think she wants him dead.
“I don’t want him to think I’m pushing him out,” she says. “I just want him to know that it’s OK. And I want to know who should say his funeral sermon.”
Eventually that question gets answered, and one of Mary’s daughters gives Ed permission to let go whenever he is ready.
“Lois told him a couple of weeks ago that if his time was up it was OK, and that they’d take care of me,” Mary says. “And that he could go. I’m starting to wonder if maybe he was worrying about those old cars of his.”
She gives a feeble laugh.
“I don’t know why that should keep him here,” she says. “Something is keeping him here.”
There is no time to discuss it though, because Ed starts to cough, and Mary rushes to his bedside to hand him a bedpan and hold his head up so he can vomit. Again.
“This has been happening every hour,” she says.
Ed is coughing up the very mucous that should fill his lungs and still his breathing. Ed chokes for several minutes, gasping for air as he vomits. Then he waves to a visitor and nods hello. Mary cleans him up and tries to take the bedpan from him.
“You have to let go of it,” she says to him gently. “I’ve got to clean it.”
Ed won’t let go of that, either.
“I’ve always found that it’s best to just let him have his way and get out of his way,” Mary says later. “He’s just going to do this his way."
Ed was waiting, it seems, for his whole family to be together one last time.
Although his four daughters visit daily, his son, Ed Jr., lives in West Virginia and had been unable to spend much time with his father.
In the days before Ed died, his son visited, as did his daughters, as did his friend Mark Stoll, who drove all the ways from Alabama without telling his children because they would have prohibited it. Local friends also visit.
Mary says it was an emotional time; a family time.
“Oh you wouldn’t believe it,” she says. “When one of his friends came in to see him, Ed took that bedpan and put it on his head and everyone had a good laugh about that. We took pictures of that, too.”
The quilt is finished and put on a bed in a spare bedroom waiting for Mary’s client to come and pick it up. She’ll likely be impressed with Mary’s tight and uniform stitches that transformed the ragged, unfinished fabric into a thing of beautify.
Mary’s work is done.
On Monday, Aug. 28, Danielle arrives for her shift at 10 p.m.
“He was pretty quiet all day,” Mary says.
Sarah Jane had visited earlier and read him some of his favorite psalms.
“He reacted to them,” she says. “He knew them.”
Mary goes to bed and Danielle decides to give Ed a bath. Mary had said it wasn’t necessary because another health aide was coming in the morning to bathe him but Danielle decides to anyway.
They recite the Lord’s Prayer together and then Ed closes his eyes to sleep.
Danielle starts to count breaths.
Shortly after 11 p.m. she awakens Mary and tells her Ed’s breathing is slowing.
Mary sits at Ed’s bedside as he draws one ragged breath. And then another.
And then his work is done.
“It was so peaceful,” Mary says of that final moment. “There was no suffering.”
Mary would be sad later. She would miss him later.
For now though, Ed’s suffering has ended peacefully.
And that is a thing of beauty.
It’s amazing what parents will do for their children.
That’s Donna Jones’ simple assessment of the hope infused, fear drenched roller coaster that has been her family life since her then 8 month old daughter was diagnosed with an incurable, aggressive, malignant brain tumor on January 23.
On this day, just about a month short of her first birthday, Tori Jones is blowing raspberries at her mother and calling coyly for her Daddy. On this day her hair has started to grow back. Her appetite has started to return. Her eyes have started to twinkle at those jokes known only to angels and infants.
But on that day in January just hours after Tori had been admitted to Reading Hospital for what her parents thought was dehydration due to severe vomiting, her eyes were tiny slits with no light emanating. Her face turned toward the wall, away from the world. She didn’t respond to voices; lay passive at her parents’ touch; didn’t flinch at the needles that were jammed into her tiny arms to feed her.
On that day Tori was hours, maybe minutes from the end of her short life, saved only by the words of a veteran nurse that Donna Jones knows only as Pat.
“I think there’s something wrong with the baby,” Jones’ quotes. “I said that the nurses during the day had just thought that maybe she was tired and needed to be rehydrated, but she said she thought it was more than that.”
For the previous couple of weeks Donna, her husband Keith and Tori had been in and out of doctors’ offices and emergency rooms in both Reading and Lancaster because of Tori’s vomiting and were told time and time again that she had a bad stomach virus, or reflux or both. Her formula was changed, she was taking zantac, eating few solids and she was still vomiting.
“Gastro is what they kept saying,” Jones said. “That’s what I told the nurse. But she said that Tori’s eyes were rolling to the right and she wanted to get a doctor to order a CAT scan. I didn’t know what to think.”
An hour later, she and husband Keith didn’t know what to feel.
“They finished the scan and the doctor just said to us, ‘there’s no easy way to tell you this,’” Jones voice fills with tears. “The entire right side of her brain is covered by a tumor.”
“I felt my life was over. Right there. It was just unbelievable. It was just supposed to be something gastro. But he was saying that she was a very sick little girl.”
So sick that there was barely time to get her airlifted to the Children’s Hospital of Pennsylvania where almost immediate brain surgery was performed.
So sick that there was no space in Tori’s room for her parents so a nurse stood at her head and sang into her ear as her mother had done earlier, so she wouldn’t be scared, while other medical personnel swirled around the room trying to stabilize her enough for the trip to CHOP.
So sick that Donna sobbed the entire ride from Reading Hospital to Philadelphia at 5:30 a.m. listing things she’d never get to tell her daughter.
So sick that Tori was baptized that night in a hospital room with each of the 15 people in attendance making the mark of the cross on her tiny forehead.
“It was the longest car ride of my life,” Jones said. “I thought that my daughter was dying and we weren’t going to be there. We got to see her and kiss her before she left (in the helicopter), but we wanted to stay there and hold her and linger there and talk to her, and I was thinking, what if this is the last time we see her alive.”
The tumor was causing swelling so acute that it was pressing on Tori’s brain stem risking herniation, paralyzation and/or death.
Miraculously, Tori stabilized during the 15-minute helicopter trip, but as soon as the Joneses got to the hospital they needed to start signing consents for surgery that could just as easily end her life as save it.
Jones said that everything seemed to be happening in fast forward and slow motion at the same time, and the entire 90 minutes Tori was in surgery, her mother prayed that God take her instead of her baby, if he needed another angel.
When surgeon Leslie N. Sutton walked toward the waiting room to talk to the family, Jones had to leave the room.
“I couldn’t hear him say the words that she had died,” she said. “If she died I wanted my husband to tell me. I went in another room with my sister and the minister and shut the door.”
Tori did survive the surgery.
But her fight was far from over.
It’s still far from over.
Two days after her life-saving surgery, the Jones were told by Tori’s oncologist Jean Belasco, that Tori had an Atypical Teratoid/Rhabdoid Tumor (ATRT).
“It was as if our world was crushed again,” Jones said. “Tori seemed to be getting better to us, and we thought we’d go back to our normal lives and we thought it was going to be great. They’d gotten the whole tumor and everything was just going to be fine.”
Rhabdoid cancer is very rare, with a very poor prognosis. There is no cure for it and it systematically wrings the life from young children with alarming aggression. While the main tumor had been excised, the cancer remained in her brain as tiny cells, poised to grow.
The joy of Tori’s successful surgery was supplanted by the reality of her future.
“You can’t believe what you’re hearing,” Jones said. “We talked about chemotherapy and survival rates, but the doctor told us that we needed to make decisions about the length of life or quality of life. But how are we supposed to make that decision?”
Jones weeps at that memory.
“We knew we had to make an unselfish decision for her,” Jones said. “But I wanted her to live.”
And at that point, it didn’t seem that was one of her choices.
So she and Keith opted to try one round of chemotherapy and see how that went. In the moments they had to make the choice, they decided to take it one step at a time, letting Tori show them when she was ready to stop fighting.
Tori – whose full name means Victory Song – was equal to the task. She’s had seven surgeries in the last two months, withstood two strong courses of chemotherapy and a 104.5 fever, and had several bouts of severe vomiting. She’s got four or five tubes running in and out of her at various times, and the shots she gets to stimulate bone marrow make her body so sore she can’t stand to be cuddled.
But she’s also learned to blow raspberries again. And she’s talking. And she dances even when she’s tethered to her crib.
“She’d see that commercial for Happy Feet and every time they danced on the commercial, she’d sit up and the whole crib would start rocking,” Jones said.
Donna and Keith have been troupers, too. Donna’s on an extended leave of absence from her job at Traveler’s Insurance and spends every minute at the hospital with Tori, folding down a chair to sleep on each night. Neither one of them has seen much of their home in Denver, Lancaster County, but both are grateful that they have family in Philly that can accommodate Keith, so that no one has to be too far from Tori and she battles on.
And they are especially troupers because they understand the overwhelming odds that face their daughter and they still find so much joy in their lives. And in her.
There is, Jones said, a small space between denial and the awful truth where she stays put, storing hope from every piece of good news that comes her way for the days when there are setbacks. Tori’s cancer hasn’t spread to other parts of her body. She recovers quickly from the chemo. Her spinal fluid is clear. Her kidneys look good. She’s walking and talking and hugging and laughing.
She may just beat the odds. Because that’s what odds are for.
Jones said she takes strength from that, and from Tori’s remarkable progress and indomitable spirit.
“She’s a miracle and she continues to be a miracle,” Jones said. “I have hope. But I’m never taking for granted the opportunity that I have to spend time with her.”
So Donna and Keith spend their days and nights at the hospital praying as much as playing and sharing strength and tears and laughter and ultimately hope.
Because Tori, with her shining eyes and her chubby cheeks and her lips pursed to blow a raspberry has shown them she wants to keep fighting.
It’s amazing what children will do for their parents.