Today's activity is called "word worm," and the subject is "things to do on a rainy day." Outside the window of the nursing home, thin columns of rain are dripping off the roof.
Inside, a dozen old people pull their wheelchairs into a circle and watch a cheerful activities assistant named Mary write a list of letters on the whiteboard. Then she turns to the group and asks, "What can you do on a rainy day that begins with the letter 'A'?" At first there are blank stares all around, but finally a woman near the window shouts out a word: announce
The people in the chairs have spent the past half hour taking turns throwing small balls toward a plastic basketball standard, the kind you might find in a preschool. Now, as it continues to pour, they watch Mary move through the alphabet. On the board, the list of things to do on a rainy day grows to include dog, fruit, open, vote.
"W," says Mary now, looking around the room.
The woman near the window calls out an answer: Waiting.
Indeed, sometimes it seems that waiting for someone to visit, for mealtime, for someone to do something for you is a central activity of people who have become too frail to manage their own lives.
In the past 10 years, Tony Morrison has visited nearly every nursing home from Springville to Logan as executive director of the Center for Human Potential, a Salt Lake company that provides psychotherapy to residents of nursing homes and assisted living facilities. He's talked to hundreds of residents whose moods mirror national studies showing that between 40 percent and 80 percent suffer from some form of depression.
Some of this depression is lifelong, some the result of the compounded losses of aging. But sometimes, Morrison says, depression is exacerbated by the nursing home itself and the choices lost in the process: whom you get to sit with at lunch, when you get to bathe, how you get to spend your days.
"As much as possible," he says, "if choice can be preserved, that can have an impact on mood."
Choice is central to the newest buzzword of the nursing home industry: culture change. Typically, when nursing homes have embraced the concept (beyond the more cosmetic but still crucial changes that try to make nursing homes look less like a hospital and more like a home), the choices have been about food: Mealtimes and menus are now more flexible and varied.
But what about meaning? What about purpose and hope? These are the intangibles that are harder to provide and impossible to monitor and regulate. That's why any state ranking of nursing homes based on "deficiencies" gives you only limited information.
Nursing homes that receive Medicaid funding are required by government oversight to have an activities program. "But what ends up happening is the activity sinks to the lowest common denominator," Morrison says.
Providing meaningful activities for the old-old, says Scott Wright, director of the University of Utah's Gerontology Interdisciplinary Program, "is a sleeping giant." That includes the old-old who live in their own homes or the homes of their grown children, although the lack is most conspicuous for those who live in facilities.
Beth Baker gets to the crux of the problem in her book "Old Age in a New Age." Activities, she argues, "are not about filling up the hours between meals and before bedtime. They represent whether the day and by extension the lives of the residents has meaning."
Of course, it's possible to bring meaning to one's life even if your main activity is bingo. The core of what's meaningful to you, says Morrison, might be nature or your religion or simply the "continuity of existence." Still it's not hard to see that there's an aimlessness that inhabits many nursing homes, even amid the outings and the crafts.
A typical nursing home calendar might list bingo, sing-alongs and something called "dice bowling." One local nursing home lists "Lawrence Welk" as a weekly activity.
If you walk the halls there on a Saturday evening, glancing into residents' rooms as you pass by, you will in fact see the benevolent face of the long-dead band leader on many of the TVs. There's something comforting in Welk's sing-song, sunny delivery, something timeless about seeing Myron Floren on the accordion playing another polka. It would be easy to write off "Lawrence Welk" as a meaningless activity but to do so might reflect the easy arrogance of a person who has the luxury of doing whatever she pleases on a Saturday night.
"How effectively can we as healthy people judge the quality of life of people in facilities?" asks Utah Commission on Aging director Maureen Henry. "I think the data show that people in facilities consistently rank their quality of life higher than others would rate it."
What are the elements of a good life for a 90-year-old with impaired cognitive capacity, and how can we practically provide that? Henry asks. "I don't think we know."
Certainly a clientele that is much sicker and frailer than even a decade ago makes it harder for nursing homes to provide activities that require energy and skill. Some medications make it hard for residents to be engaged, and some residents, left to their own devices, would have what Paul Fairholm, past president of the Utah Assisted Living Association calls "self-imposed isolation." There is always a tension between being realistic about what kinds of activities an elderly person can engage in, and the reality that, as gerontologist Wright says, "if everyone treats you as frail, it's a self-fulfilling prophecy."
Still, it's not hard to imagine activities that might be more creative, more challenging and rewarding, more tailored to each resident's skills and interests, perhaps done in smaller groups or even individually. But doing that would require more thought and probably bigger staffs and that would require more money.
At some nursing homes, residents tend little gardens and help with occasional chores like folding the laundry or folding the napkins for dinner. That's not much by an outsider's reckoning, but it's at least less an "activity" and more a continuation of a useful life.
Eliminating helplessness, as well as boredom and loneliness, is the goal of the Texas-based Eden Alternative, a nonprofit organization founded in 1991. The movement, which has so far enlisted 300 nursing homes across the country, encourages environments that are more spontaneous and filled with opportunities for residents to take care of "other living things." This week, representatives from the Eden Alternative are in Utah meeting with nursing home operators to gauge interest and provide training.
"Meaningless activities corrode the human spirit," says Marla DeVries, an Eden educator and mentor.
At Salt Lake City's Hillside Care Center, activities director Andrea Hawkins tries to provide what she calls "crafts with a purpose" like service projects for Primary Children's Medical Center or quiltmaking for global relief funds. Morrison wonders why nursing homes don't team up with local nonprofits to hire residents to stuff envelopes.
And it's not just nursing home and assisted living residents who can benefit from being helpful and productive. JoAnn Knight, who lives in a low-income senior apartment at City Plaza, crochets blankets for battered women, a project through her LDS Church Relief Society. Lily Kunz, who lives in Wasatch Manor senior apartments downtown, does the laundry of her sick neighbors and makes cakes from scratch, dropping them off to her friends down the hall. To keep the place cheery, she puts up decorations near the elevator, changing them for each new season.
Fred Libby, who at 88 has moderate dementia, volunteers once a week at the Utah Food Bank with his wife, Joan. On a recent morning, Fred happily sorted boxes of mac-and-cheese and jars of peanut butter that will eventually end up in the cupboards of hungry Utahns. No matter that, later in the day, the former Eastman Kodak supervisor won't remember having been there. In the moment he knows he's contributing to his community.
Advanced dementia is more problematic, and "usefulness" more of a stretch. When one local woman was desperate to keep her mother engaged as Alzheimer's narrowed her world, she brought dried pasta for her to sort by shape, bringing the exact same noodles back week after week. Bernice Earl's husband, Lavar, thought he was a staff member at the adult day care he attended every day, and both Bernice and the staff never contradicted him.
Yes, says Morrison, "it's sort of like a white lie. But it's validating the person's emotional experience."
Meaning also comes from relationships, but a person with dementia may not recognize her own children, says Nick Zullo of the Utah Alzheimer's Association. The organization teaches family members to create a "joy box," which can act as a bridge between people who've lost each other. It may be as simple as a cardboard shoebox with a few treasured trinkets and photos. Chances are, he says, that even if someone doesn't remember, she'll enjoy and feel connected to once-loved things.
Expression, too, can provide meaning, which is why at the Neighborhood House Riverside adult day care program, director Kathie Williams says she tries to provide art projects and group poems that "reach into" the clients. "There's always something left in a person, no matter how much dementia, if you take the time, if you can find the right question to ask or the right activity."
Eden's DeVries challenges nursing homes to find the simple pleasures for each person who lives there a cup of coffee each morning in a favorite mug or sitting in a favorite chair to read the newspaper while the sun streams in. "There's a sameness, a ritual, to these pleasures."
After a long life as "somebody" when you've lost your vision and your hearing, when most of your friends have died and you no longer have a career, when it's hard just to get up out of your chair it's easy to make a long list of what you can't and won't do.
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"I don't dance, I don't play cards, I don't have a husband, I don't want to do any crafts," says an 89-year-old woman who lives with her daughter. While everyone is at work, she's alone all day, and when they come home she makes it a point not to talk to her daughter's new husband, whom she doesn't like. Macular degeneration makes it hard to see, so she can no longer drive. If you suggest she might enjoy going to a senior center the center would pick her up in a van she dismisses the idea. Ask her if she might want to help an immigrant learn English, and she says, "They don't want to learn English." Suggest that she might enjoy going to church, and she frowns. The last time she went, she says, she spilled the sacrament water.
Dwelling on her limitations, the woman has made her life a little island. She sits in the center of it, unwilling to find much that makes her happy. "I have no future," she says, "only the past."
Meaning, as we age, is sometimes brought to us by a thoughtful caregiver or a family member with a joy box. But sometimes we have to be willing to look for it ourselves.
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