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.
More…
A Final Cocoon – Dying at Home – NYTimes.com.
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Slinking Toward Retirement 