Alzheimer's Reading Room
All Night Care for Dementia’s Restless Minds
By CARA BUCKLEY and JAMES ESTRIN
THE patients were on the loose again, moving their shrunken frames through the nursing home’s shadowy halls, chattering and giggling like children sneaking out of camp.
It was after midnight. Nearly everyone inside the Hebrew Home at Riverdale, which hugs the banks of the Hudson River in the northern Bronx, was fast asleep. The group crept past a large fish tank and rounded a corner, startling a security guard who jumped at the sight of them: seven tiny women with lights glinting off their silvery hair. Then the guard noticed a young employee pushing one of the women in a wheelchair, and relaxed. It was just the night-care group, out for a supervised stroll.
One of the ladies began singing a salsa song, creakily sashaying her hips. Another took note and grinned. “Shake it, don’t break it,” she called out.
The seven women all have Alzheimer’s disease or dementia, and are part of the Hebrew Home’s ElderServe at Night, a dusk-to-dawn drop-off program intended to strengthen their decaying minds while sating their thirst to be active after dark.
Alzheimer’s is an irreversible brain disease that destroys memory, and it is one form of dementia, a disorder marked by the loss of mental functions. Nighttime can be treacherous for people with dementia, who are often struck by sleeplessness or night terrors and prone to wandering about. This agitation and disorientation, called “sundowning,” is especially vexing for relatives trying to care for them at home, and often hastens their placement in nursing homes.
While there are countless day care programs for the nation’s estimated 5.3 million Alzheimer’s patients, some experts believe that ElderServe at Night, which began a decade ago, is the only one of its kind in the country.
Participants are fetched from their homes by vans and spend 7 p.m. to 7 a.m. painting, potting plants, dancing and talking — or, for those immobilized by their disease, relaxing amid music, massage and twinkling lights. The patients rest as they need, for a few minutes or a few hours, and return home the next morning fed, showered and, usually, tuckered out.
“At home we’re alone, with no one to talk to,” said Maria Viera, 73, who lives by herself in the Mott Haven neighborhood of the Bronx and has been in the program since 2007. “And it’s a good place to pass the night, because we can’t be alone in our houses.”
Friendships are forged, and at least one romance has bloomed: Luis Maldonado used to hold the hand of tiny Isabel Quevedo and kiss her cheek. Mr. Maldonado died in April at 83. When asked about boyfriends, she scoffed. Men want just one thing, said Ms. Quevedo, 79, “and I don’t want my reputation to go down.”
On a gloomy Thursday in May, the women drifted in and took their regular seats at round tables, waiting for dinner. Outside, gray clouds hung low and the darkening sky spat showers of chilly rain, but in the room, it felt as if the day had just dawned.
Attendants rolled down blackout shades to mute the effects of sundowning, flipped on incandescent lights in the hallway and lighted incense. A stereo swelled with Cher singing, of all things, “If I Could Turn Back Time.” Mrs. Viera began singing along.
THE program was born in 1998, after Daniel A. Reingold, now president and chief executive of the Hebrew Home, began hearing horror stories from people who jury-rigged alarm systems or slept on mattresses pulled across thresholds to stop their sleepless parents from wandering at night. Sleep deprivation, he learned, was causing many guardians to put relatively high-functioning patients into nursing homes rather than day care programs.
“How do we fix that?” he asked David V. Pomeranz, the home’s associate executive director. Mr. Pomeranz, who at the time had a toddler at home waking in the wee hours, replied: “What if we took the day program and ran it at night?”
The activities mirror those done during the day: arts, crafts, exercise, and holistic remedies like meditation and pet therapy. Rather than give agitated patients mood-altering drugs, ElderServe aides might lead them by the hand into a softly lighted room, slip off their shoes and socks and massage their feet with a warm washcloth.
The twin drop-off programs account for about 3 percent of the Hebrew Home’s $105 million budget; at night, 10 recreational therapists, nurses and aides tend to up to 40 clients, few of whom are Jewish. Most are covered by Medicaid; the private fee is $215 per night.
The staff indulges the urges that dementia and Alzheimer’s induce, walking with patients who crave a 2 a.m. adventure or taking evening trips to the circus or restaurants. “We’re kind of like the party house on the block,” said Deborah M. Messina, who is 32 and the director of both the day and night programs. “The lights are on all night and the music is going.”
Ms. Messina and Mr. Reingold have made presentations to professional associations, hoping others might copy the program. But a spokeswoman for the Alzheimer’s Association, a nonprofit research and education group based in Chicago, said she knew of no other nighttime drop-off program like it. Though it has not been independently evaluated, organizers say the program has helped patients maintain a discernible alertness even as their minds erode. It has also given their relatives desperately needed breaks.
Louise Yarin and her husband and teenage son were at their wits’ end caring for her mother, Catherine Fetonti, who is 90 and was found to have dementia in 2004. Mrs. Fetonti woke them up most nights, yelling Hail Marys and demanding to be taken home. Ms. Yarin tried to fix things by moving everyone into Mrs. Fetonti’s old, smaller house in Yonkers. But the nightly outbursts continued, even after Ms. Yarin began sleeping in her mother’s room.
Then last year, a social worker told Ms. Yarin, who is 52 and works part time in a day spa, about ElderServe, and everything changed.
“Our first night when she was down there, we woke up in the morning and it was like, ‘Huh, what was that?’ ” Ms. Yarin recalled. “It was like when your baby first sleeps through the night.”
Paul Navarro enrolled his 85-year-old mother, Maria, a year ago: Her memory had started to fail after her husband died in 2005, and she developed a paralyzing fear of being alone. Mrs. Navarro resisted the program at first, weeping every time the ElderServe van pulled up in front of their Bronx home. But like a kindergartner acclimating to school, she made new friends, and blossomed.
“It’s like her mind cleared up,” said Mr. Navarro, who works as a property manager for New York City. “She’s happier. She’s truly, truly happier.”
NOWADAYS, Mrs. Navarro calls Ms. Messina on speed dial if the van picking her up is even two minutes late. On the gray Thursday, she arrived early, her dark eyes magnified through bottle-thick lenses, and welcomed Mrs. Viera. Both women are relatively lucid, their forgetfulness surfacing in spurts. Together with Carmen Febres, 64, a woman with a mischievous streak, the Marias make up something of a clique, usually sharing the same table for dinner.
Mrs. Febres came lumbering in, her hair in rollers beneath a kerchief, and lowered herself heavily into a chair. She has grown heavier since she joined the program: She loves to eat but often forgets when she has, sometimes taking double or triple meals. A nurse came to prick her finger and test her blood sugar; like many of the patients, Mrs. Febres is diabetic and frequently fails to take her medicine or accidentally takes it twice.
Mrs. Febres said it was a good night for cuddling up with a man and some wine. “Because of the rain,” she said, her eyes sly beneath heavy lids. She reminisced about earlier, lusty escapades in her life. Mrs. Viera said she separated from her husband long ago. “I never got another man,” she said. “One was enough.”
Most patients eat in groups, but one, Miguel Colon, often sits alone; he coughs forcefully when he eats, spraying food. Mr. Colon is 70, bald and burly, rarely speaks and walks in a slow, pained shuffle. He entered the dining room in a wheelchair wearing a mask that covered his chin but showed his face (his daughter, with whom he lives, bundles him up even when it’s warm).
Mrs. Febres’s eyes widened as a plate was set before her: sole stuffed with seafood in a lemon-garlic sauce, with broccoli. For dessert, fresh strawberries. She dug in.
At 9:30 p.m., Al Smith, a local musician, set up his keyboard and began banging out blues and Motown tunes. The patients shook their maracas, moving their hips in their seats. On salsa nights, the dance floor fills, but Mr. Smith’s oldies brought out only a few nursing assistants and a lone patient, Carmen Hernandez, who is 82 and missing her front teeth; she wore a thick woolen cap over steel gray hair.
Mrs. Hernandez danced over to Mr. Colon — the lone man among the abler patients — and tapped her maraca against his. She wiggled her backside, leaned over, took his face between her hands and planted a kiss on his cheek. Then she danced over to the one-man band. “What a flirt,” a nurse’s assistant said.
NEXT door, a quieter sort of party unfolded in a darkened room filled with sensory delights: A yellow spotlight danced off a disco ball, New Age music purred softly, and a citrus smell filled the air. Three nursing assistants moved among a dozen patients, trying to coax movement out of frozen limbs.
The patients slumped in wheelchairs, arms contracted, Pharaoh-like, across their chests, or leaned heavily on tables, heads in hands. These were the ones whose advanced dementia, compounded by other afflictions, had ravaged body as well as mind, nudging them closer to death; the ones who would need their diapers changed and their limbs washed before being put to bed. One is a blind former pastor who spits, a habit the staff tempers by slipping gum into his mouth.
Early in the evening, Ms. Messina, the program director, worked the room, stopping to rub the back and shoulders of Fouad Moustafa, 82, whose various ailments have stolen his ability to walk and reduced most of his words to slurs. The night nurse supervisor, Mabel Hernandez, caressed Mr. Moustafa’s tufted pate as she passed. He exhaled softly. A smile played on his lips.
“Not everybody touches them,” said Karena Larrequi, the night recreation supervisor. “People think, ‘They don’t know, they don’t feel.’ We want to remind them that even though they can’t speak, that we know they’re there.”
A children’s pool filled with soapy water was set on a table, and a few people sat around it, playing with the suds, squeezing the soft toys.
Patients began nodding off as the nursing assistants massaged their arms with lotion, squeezing palms and wrists. Hilda Marcial, 93, took hold of a nurse’s hand and began massaging it back.
BACK in the active room, the music ended by 11 p.m. and it was guacamole time. Ms. Larrequi, the recreational therapist, handed out avocados, tomatoes, peppers, garlic and cilantro to chop up with plastic knives. Mr. Colon popped a raw garlic clove into his mouth, then some cilantro. Mrs. Febres, the diabetic overeater, asked if there was any rice. “No rice, Carmen, no rice,” Ms. Larrequi replied. Mrs. Febres tried another tack: “Do you have any Löwenbräu?”
Around 1:30 a.m., after their midnight walk, most of the women began drifting to beds, lined up dorm-style in a nearby room.
Mrs. Febres was still up. She sat at a table pulling a comb through Ms. Larrequi’s long raven hair; though she is decades younger than most of her patients, the therapist seems like an older sister, or a really cool counselor at camp.
Ms. Messina, the program director, sat across from them, and the place suddenly felt like a girlish slumber party: Mrs. Febres was talking, again, about men and sex, causing Ms. Larrequi to dissolve into giggles.
“Karena, don’t encourage her!” Ms. Messina said in mock indignation.
Mrs. Febres fixed her eyes on Ms. Messina. “Are you a virgin?” she asked.
“Carmen!” Ms. Messina replied, laughing. “You ask me this every time.”
The night melted by, and as dawn approached, the nurse assistants began hoisting patients from beds, stretching stiff arms and legs, slipping off pajamas and buttoning up street clothes. At first light, they groggily gathered around tables in the main room, waiting for coffee and breakfast and their eventual ride home.
Mrs. Fetonti sat with Mrs. Viera, who was wearing a fresh coat of peach lipstick. Mrs. Viera began speaking in Spanish, which Mrs. Fetonti does not understand; she replied anyway — in English. Mrs. Febres sat nearby, eyes closed, head back, mouth agape and emitting a soft snore.
The day nurse supervisor, Rina Ginat, breezed in and handed everyone elasticized bands for stretching, helping them one by one through elementary yoga moves and breathing techniques, holding their hands in hers.
“Miguel!” Ms. Ginat cried merrily, as she approached Mr. Colon, who was sitting by himself, “Cómo estás?”
Mr. Colon smiled shyly, and uttered his first word in at least 12 hours: “Bien.”
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Bob DeMarco is the editor of the Alzheimer's Reading Room and an Alzheimer's caregiver. Bob has written more than 3,510 articles with more than 298,000 links on the Internet. Bob resides in Delray Beach, FL.
Original content Bob DeMarco, the Alzheimer's Reading Room