November 10, 2010
A Final Cocoon: Dying at Home
By JOYCE WADLER

THERE is some confusion about the cause of the liver disease that has given Fred Kress a short time to live. The 46-year-old handyman and house painter, who lives outside of Baltimore, had had hepatitis C, which causes liver damage, for several years. Doctors at one point suggested that alcohol abuse may have been a contributing factor, which makes no sense, Mr. Kress and his family say, because he was never much of a drinker. The real culprit, he now believes, was chemical: he didn’t wear the right mask when he was painting houses, and when he did his craft projects, making alien masks out of fiberglass resin, he worked in a small, windowless room, ignoring all the warning labels on the supplies he used.

“It said ‘will’ — not ‘can’ — cause liver and kidney damage,” Mr. Kress said. “My liver was completely fried.”

Even before he became sick, however, his life was no bed of roses. He had had a 20-year love-hate relationship with a girlfriend and was living, at the time of his diagnosis, with his widowed mother. His 17-year-old daughter has Rett syndrome, an autismlike disease that has left her unable to speak. And the day last February when his doctors told him he had no more than a year to live, his girlfriend and his best friend hooked up.

“That’s been rougher than knowing I am going to die,” Mr. Kress said. “And then, for some reason, I picked up a paintbrush. I got that paintbrush in my hand, I don’t think about any of that.”

Mr. Kress stepped up his work on the masks. He covered the walls of his room in fluorescent paint, illuminating it with black light that made the colors come alive, and bought 30 mannequin heads for $3 each, painting them fluorescent colors as well.

“I love it,” he said. “Whatever I happen to paint that night, I’ll sit there and kind of stare at it and eventually fall asleep. Anything beats crying myself to sleep.”

Although Mr. Kress was making the masks long before his diagnosis, said Bonnie Weissberg, a social worker at the Gilchrist Hospice, which is providing him with at-home care, “When he realized he was going to die, he just devoted himself to making the room itself a work of art.”

According to the National Hospice and Palliative Care Organization, most Americans — 80 percent, one survey reported — would prefer to die at home. It’s a choice that necessitates a number of physical changes, like setting up medical equipment and bringing in a hospital bed. For some people, however, what matters more is altering their environment in a way that makes them feel better emotionally — creating a place that represents their final idea of home. Family members often find the process surprisingly helpful as well.

Dr. Robert Milch, the medical director emeritus at the Center for Hospice and Palliative Care in Buffalo, N.Y., recalls a patient who had had a tumultuous marriage. She and her husband “had separated on several occasions,” he said. But when terminal cancer was diagnosed in her, “they came to cohabit again, and he cared for her as her disease progressed.”

This woman told her husband that what she really wanted, he said, was a sun room where she could spend her last days sitting and looking out at the woods and the mountains. “He undertook the creation of a Florida room off their deck, and built it himself over the course of two weeks, so he could move her out there,” Dr. Milch said. “All I could think of was in the winter of their discontent, he brought an endless summer.”

For someone else, of course, the final idea of home might be something very different. The crucial thing, said Dr. Cheryl Phillips, a past president of the American Geriatrics Society and the chief medical officer for On Lok Lifeways, a nonprofit organization that provides services for the frail elderly in greater San Francisco, is finding out what makes the person who is dying feel most at ease. “If there was one thing that would make a difference, what would it be?” she said. “It’s amazing how creative people can be to make these special wishes come true.”

Warm Sand in Winter

Virginia Fry, a counselor who has been the director of the Hospice and Palliative Care Council of Vermont for 30 years, believes people should have a bucket list for the environment where they spend their last days — including what it should look like, and how it should sound and smell. Smell is particularly important because the odors of illness can be intrusive, Ms. Fry said. Often, people try to mitigate that problem by putting out bowls of potpourri or dabbing essential oils on light bulbs.

To create a happy environment for a woman in Vermont some years ago, Ms. Fry and her organization went way beyond potpourri. The woman dreamed of going to Hawaii, but she did not have the money, Ms. Fry said, and she was too ill to travel. And so the hospice organization brought Hawaii to her — a particular challenge in a Vermont winter. Ms. Fry asked what the woman’s favorite colors were and bought Hawaiian fabrics that could be wrapped around her like a gown (this outfit had to accommodate her IV pole). Tiki torches were mounted in the snowbanks leading to the house. Visitors were asked to wear shorts and Hawaiian shirts, and to make the home smell like Hawaii, they were offered copious amounts of coconut oil. The organization’s board of directors had a 40-orchid lei flown in from Hawaii — the first fresh flowers the woman had ever had in the house, she told them. A recording of crashing waves and an erupting volcano played in a continuous loop, and meats grilled with pineapple were served.

“We had what it looked like, what it smelled like, but we were stuck at the sense: how does Hawaii feel?” Ms. Fry said. “We decided it was hot sand on the feet, so one of our staff members took her driveway sand and heated it in the oven for four hours until it became powdery. Then we laid down sheets with electric pads on top of them, then another sheet on top of that, then the sand on top of the that, so the sand covered an area of about three feet.”

Where was the owner of the house when all this was happening?

“She was directing it,” Ms. Fry said. “You want the patients to be directing, because they lose power by being patients, so anything that restores the sense of control is therapeutic.”

Still, three square feet of sand doesn’t sound like a lot of beach.

“She would be sitting or standing there,” Ms. Fry said. “And she would invite people as they rotated through to stick their toes in her sand and sit with her.”

A Garden From Childhood

Susan Sanchez, an administrative assistant who lived in Santa Barbara with her husband, Oscar, a retired engineer, and her adult daughter, Amanda, loved gardens. For a few years after moving to California, she had a small garden with a patio and fountains, and after her first brush with illness — a brain tumor in 2001, when she was 60 — she starting writing stories, one of them about her grandmother’s garden in England. It was remarkably detailed, considering that the memories were 50 years old: Ms. Sanchez spoke of the whitewashed outhouse; the toad that she and her brother occasionally treated to worms; the path that divided the flowers and vegetables; and her favorite plants, the runner beans.

“They grew up a number of tall trellises and had lovely scarlet flowers,” Ms. Sanchez wrote. “My granny called them scarlet runners. It was a high day and holiday when the scarlet runners were ready to eat.”

The story concluded: “My granny’s garden fed our stomachs and our senses. My granny fed our souls.”

Four years later, Ms. Sanchez was diagnosed with ovarian cancer, and by 2009, she knew she was dying. She wanted to be cremated and chose for her funeral urn a garden birdbath; the support column would contain her ashes. Her garden, however, was in disrepair and her daughter, Amanda, who was having health problems of her own, was not strong enough to restore it.

So her daughter contacted the Dream Foundation, a nonprofit organization. Using the story as a guide, volunteers created an English garden with the flowers from Ms. Sanchez’s childhood. The birdbath that was to be her resting place was highlighted with a circular flagstone path.

The garden was finished just two days before Ms. Sanchez died, said Jackie Waddill, the donor relations manager for the Dream Foundation, but because Ms. Sanchez was able to help create it, she was comforted by the knowledge that it would one day be a beautiful place where her husband and daughter could remember her. Amanda Sanchez, who had a memorial there on the anniversary of her mother’s death this year, said that the garden has been a comfort for her as well.

“We have a lot of roses, irises and those bearded irises around her birdbath, and then I started growing some vegetables this year,” she said.

How were they?

“They were wonderful. And the birdbath is very visible. I was very close with my mother, and I know how much she enjoyed these things, watching the birds, so I do that now,” she said. “And the beans were practically right outside the door, so I just pull one off and stand there and eat them and think of her.”

A House in Nature

Bernd Krausse was a German engineer who loved nature. He and his wife, Laurie, a dental assistant, owned a ranch house in Kenwood, Calif., in the Sonoma Valley. It was a little fixer-upper on a third of an acre, she said, but it was across from Sugarloaf Ridge State Park, with views of the mountains — and, of course, Mr. Krausse could and did fix anything. The couple decided not to have children so they could spend their time together doing the things they most enjoyed: hiking, fishing, skiing, rafting.

But five years after they bought the home, when Mr. Krausse was 52, they learned that he had a glioblastoma, an aggressive brain cancer. His wife, who was 12 years younger, was devastated. “This was my soul mate, the love of my life,” she said. Her husband, who had always been interested in Eastern religions and believed he had a spirit that would survive him, was calmer.

“He said: ‘It’s O.K., everybody has to die. I’m here with you, let’s just focus on the now,’ ” she recalled. “He also said one of the things he had to do was finish this house, to put the windows in. We talked about going to Hawaii. He said, ‘Let’s go to Hawaii and be with God.’ In Bernd’s eye, God was beauty, God was nature, God was the flowers, the mountains, the moon and the stars, so he wanted to be outside all the time. He was not one who was going to lie in bed and die, that’s for sure.”

But finishing the house proved too much for Mr. Krausse, who had begun having seizures and could no longer drive or work, and his co-workers pitched in to complete the job. One day, when his wife was coming home from work, she was stunned to learn from a neighbor that he had been seen getting off a public bus with 12-foot planks strapped to his body — materials for the backyard barn the couple had spoken of one day building. With the help of family members, the barn was completed. His wife tried to make it as nice as possible, decorating it with a white cast-iron bed and Oriental carpets, and it became the couple’s last home together.

“Bernd was just in love with that barn,” she said. “For months and months before he died, he wanted to sleep in it all the time. It was comfortable to him because it was rustic and he felt like he was outdoors. We would sit out and look at the stars and the mountains.”

It was the couple’s wish that after his death he would lie in rest for a few days at home — they worked with Jerrigrace Lyons, the executive director of the home funeral organization Final Passages in Sebastopol, Calif., to make that happen. After his body was cremated, his wife kept his ashes in their house for many years, finally scattering them by the barn.

Laurie has since remarried, and the barn is now used for storage. But to her, it still represents his resting place. If she’s had a hard day and she needs to visit him, she goes out to the barn and kneels down. “Hi, Bernd,” she says.

Coming Home

The life of Debra Rothenburgh, a 41-year-old waitress in western New York, was a modern American tragedy even before her metastastic cervical cancer was diagnosed in August. As a girl, she spent time in foster care; she had to get married at 17, when she got pregnant; later, she lost custody of the child, a son; and then she had two more children, both of whom died in accidents as teenagers. When Ms. Rothenburgh learned she had cancer, she was working as a waitress in Bath, a small town outside Corning, N.Y., a job, ironically, that made her situation worse.

“She didn’t have insurance,” Ms. Rothenburgh’s mother, Gwen Lewis, of Palmetto, Ga., said. “She made too much money, they took her Medicaid away from her — she made $7 too much a month. She was going to work with ice packs on her back. August 6, she got taken to Corning Hospital. At one o’clock in the morning, she called me and told me, ‘Mama, I’m dying, I’m full of cancer.’ I said, ‘Debra, don’t you say that.’ ”

Ms. Lewis continued: “I said, ‘I’m on my way.’ I drove to my daughter’s house. She was crying. She said to me, ‘I’m dying.’ I said, ‘Yes.’ She said, ‘How long can you stay?’ I said, ‘Deb, I’m staying till the fat lady sings, and she’s only humming now.’ ”

Ms. Rothenburgh, who had an apartment in Bath, initially wanted to stay in the area to be with friends, but by the end of August, she had changed her mind. Her stepfather, Jim Lewis, brought some of her furniture back to Palmetto — her dressing table, her entertainment center — and tried to create a room that would feel very much like home to her. Ms. Rothenburgh did not want a hospital bed, so Mr. Lewis found her a twin bed, with a comforter in a pattern that matched the dress Ms. Rothenburgh wore at her son’s wedding. He filled the room with family pictures, including a photo of her at the wedding.

Nurses came from the Southern Tier Hospice and Palliative Care Center to take care of her. She and her mother spent most of their time sitting on the front porch, enjoying summer’s end.

One day, while she was staring at the bins filled with her possessions that were sitting on the porch, Ms. Rothenburgh said, “Here I am with nothing again.”

Her mother replied: “You know, honey, we come in with nothing and we go out with nothing. It’s only material stuff.”

Later, Ms. Lewis observed: “She wanted to camp out this summer, and we couldn’t have done that up North. Jim brought out chaise longues, which have the nice pad, and we brought her pillow so she could fix her pillow around that.”

She added, “I had a baby monitor for her, and all night I could hear crickets.”

Ms. Rothenburgh died on Sept. 27, with her brother and sister and mother at her bedside. Some people, Ms. Lewis said, felt her daughter should have been in a medical facility, but she disagrees.

“If she was in a hospital, you don’t have that time,” she said. “She wouldn’t have been able to sit on the porch, to camp out, to listen to the crickets. She got to do what she wanted to do, and I’m happy about that.”