"Help me ... help me ... please help me ... oh God, help me ... "
The stranger bends over her knees and wails in her wheelchair as Ben and Florence Oliver walk down the nursing home hallway. Today, at the happily named Brooke Grove Retirement Village, the Olivers are visiting one of the scary floors, an area sealed by locked elevators so that residents with serious dementia cannot escape.
Ben keeps Florence moving, eager to clear this corridor as he helps steady his wife. A toilet flushes and a door swings open. A sign reads, "Today is WEDNESDAY. The season is SUMMER. The weather is HOT. The next holiday is THE FOURTH OF JULY."
The Olivers reach Charlotte Kleinbecker's door.
Inside, a shrunken woman lies under a blanket, a pink gown covering her body, her bones sunk so far into the bed it's hard to see where the mattress starts and she stops. Charlotte once lived two floors down from the Olivers at Leisure World. But as the neighbor became overwhelmed by confusion, Florence gained power of attorney over her affairs. The two were never that close - Florence just realized Charlotte had no one else, so she stepped in.
Now, nearly a decade after the neighbor's dementia surfaced, Florence sits at her bedside.
The 96-year-old patient lies still.
In recent years, Ben has taken over the business of Charlotte's care from his wife, who is herself increasingly ravaged by Alzheimer's disease. He cannot fathom taking his Florence out of their Silver Spring senior-citizens community and putting her in a place like this. In fact, he has constructed their life to avoid precisely this.
Charlotte is quiet, but a few feet away, her roommate babbles from her bed.
"I-bee, I-bee, I-bee," the roommate says, her voice as raw as a throatful of glass.
Startled, Florence turns toward the sound.
"I-bee, I-bee, I-bee," the roommate rasps, her thin white ponytail askew.
Florence stares, asks her husband if this woman is a man, then stares some more. It's as if the part of Florence that is still lucid is reeling from what she sees and hears and understands: that this is a visit to the end of life. Florence looks from the roommate to Ben to the door. Every part of her seems to be saying, Get me out of here.
Both Charlotte and her roommate lie under yellowing pictures from their youth, reminders of who they once were. Ben and Florence have pictures like this, too - Ben is fond of poring over them, glimpsing the Florence of his past, seeing the woman who could glide at a ballroom dance as easily as she could hurl a softball fast and on target.
Charlotte suddenly rouses herself. In one sharp motion, she turns to Florence.
"How you feel?"
"I don't feel too good," Florence tells her.
"How you feel?"
"I feel good," Florence says, equally convinced.
Nothing in this room computes.
"I-bee, I-bee, I-bee," the roommate says.
Florence tries to hoist herself up.
"Where are you going?" Ben asks his wife.
It used to be Florence who stayed, back when no one else would. Charlotte was already in her 80s and sliding deeper into dementia, her apartment filled with a bizarre assortment of magazines, her unpaid bills stacked high, her phone service cut off. Florence saw this widowed German immigrant with no children, sick and alone, and thought, there but for the grace of God goes anyone. She wrote the relatives in Germany, begging them to step in or lose Charlotte's care to a faceless bureaucracy.
"If you choose not to do this, then the County Government will do it for you and you may not like the results," she warned in that letter. But Florence couldn't make good on the threat, and soon she was the one taking her neighbor to the doctor, monitoring her bank account and finally putting her in a nursing home.
"I-bee, I-bee, I-bee," the roommate growls.
Florence is rising again, turning toward the exit, looking between the roommates, looking for the door.
Ben still hasn't found a caregiver for his wife. He said he'd deal with the idea after the family's Caribbean cruise. But it has been weeks now, and, still, nothing. He confesses that the more he thinks about it, the less he believes it's necessary. He has been caring for Florence for three years now, since he first noticed her disease, and he found he can do all the work a nurse would without upsetting his wife, without inviting a stranger into their midst.
The Oliver children push Ben hard to hire an aide, but he resists.
He thinks of his son and daughter as spectators, in a way - very close to the situation, but not living with it as he is, 24 hours a day. He doesn't mind them second-guessing him, offering advice - he knows it's out of concern - but he wants them to remember the final decision still belongs to him. And for now, Ben has ruled, he can handle everything just fine on his own.
After today's visit with Charlotte, he will stop at the KFC - not invalid food for them, but barbecued wings and his wife's favorite coleslaw. Even though Florence will panic in the car, spotting a funeral procession out the window where none exists, Ben will focus on the parts of this outing that still seem familiar. The Olivers are bound by rituals now, anything that reminds them that they are still in this together.
Ben supposes they should get going. He moves to say good-bye to Charlotte but stops. Her eyes are closed. Better just leave her. This solitary woman has always been a mystery, hard to know no matter how many questions he asked. Now she will never offer any answers - her sickness has trapped them inside her.
Ben helps Florence to her feet. He has decided to serve as the stand-in for her wheelchair today, no apparatus necessary to keep her moving. She leans on him, and he balances her, nice and steady.
They walk down the hall, past the carts of clean sheets, the nurses, the residents lining the corridors in their wheelchairs.
The sound comes as Ben and Florence step into the elevator.
"Help me, help me, oh God, help me ... "
They turn. That lost soul again.
"Help me please, mama. Mama, oh God ..."
The Olivers look out, and the doors close.
Paramedics know to check the refrigerator during Leisure World emergency calls, because many people keep their medical histories chilling there. Ben is no different. His sits on the top shelf next to a lone can of beer. He can see it as he reaches for the salad dressing and fixings for dinner on this Tuesday night in July.
In Ben's case, the yellow medical form is tucked inside a plastic film canister marked "BEN OLIVER." It is called a "file of life," and it is there in case Ben collapses.
He knows Florence could not speak for him in a crisis, so Ben has checked "yes" next to, "Do you have heart trouble?" He added in his own wobbling hand: "*Had triple bypass heart surgery in October 1984." The file needs updating. The 77-year-old hasn't touched it since his quadruple bypass surgery in 2002, and he hasn't noted his other problems - like losing a kidney to cancer seven years ago.
Florence does not have a file of life; Ben can't foresee a time when his 81-year-old wife would be alone in the apartment without him there to interpret for the paramedics. For all his concern, though, if something happened to him, she'd be vulnerable, too. She could never explain her sickness.
Ben is in charge, controlling the comforts and the hazards. He keeps a magnet of Florence's favorite saint on the refrigerator, so she will feel safe. It reads: "Saint Anthony: Protect your companion." He doles out the medications - an island of orange prescription bottles sits on the kitchen countertop - and he watches so she doesn't pop the pills like candy.
Tonight, he boils rigatoni and drops frozen meatballs into a pan with some sauce from a jar.
"Que sera sera, whatever will be will be ... "
Florence is singing while Ben puts down two paper towels for place mats, preparing for their pasta dinner.
It's his last big task in a day filled with tiny ones to keep his wife intact. The drill starts at 9 a.m., when he helps Florence with her sponge bath, standing as a spotter in the bathroom to make sure she doesn't fall. Once a week, he washes her hair - over her loud objections. The tantrums are worse when they're alone, just the two of them in the apartment all day, no company.
Sometimes there is a mess for Ben to clean up. Florence rejects all talk of adult diapers, and usually Ben can get her into the bathroom in time. But not always, possibly because of all the pills, or maybe the steady worsening of her disease.
Getting her dressed exhausts Ben, and not just physically. He must discourage his wife from putting on outfits over her nightgown, all while trying to keep her thinking she's the one doing the dressing. Florence always prided herself on her sense of style. Any hint that her husband is usurping her authority and she will refuse his help altogether.
In the kitchen, Ben guides a spoonful of sauce over 16 rigatonis on Florence's plate. His hands always quake, but they're especially bad tonight. He grasps the shaking spoon hand with his shaking free hand and rotates his upper body, slow like a construction crane, until he can dump the red sauce over the pasta. With this precision, he builds a dinner for Florence.
Here, in the quiet kitchen with the sound of her husband's voice and his warm food, Florence eats. She barely touches a meal if it is not delivered under these exact circumstances by her husband of 52 years.
Ben arranges a plate for himself, sits down and tries some chitchat.
"Did you like the food on the QE2?"
He is playing dumb. He knows the answer already; she hated it. He just hopes the subject of the meals on that cruise ship will spark a memory.
"Oh, I'll remember next year," Florence tells him, "when I'm better."
The TV rarely blasts at dinnertime in the Oliver household. Ben prefers conversation. Florence talks, and Ben seems able to speak her language. He knows from the context and her gestures that when she mentions she's looking for a stolen piano she really means her jade ring is loose on her finger. "Vegetable hunting" is grocery shopping and a "face without the talking" is a photograph.
Ben listens like he understands when his wife asks, inscrutably, "How about getting back to the important things, like Mickey Mouse sardines?" or when she fumes at him, "I'll send you to the Moon but I don't know how to fight anymore," or when she devises an eerie rhyme, like the one that goes, "Why don't we just wait for the cemetery gate?"
How much does Ben actually comprehend and how much is he just tricking himself into believing he does? The answer seems unknowable. But Florence talks to him more than to anyone else, and Ben listens differently than others do. When he recounts her musings, it's as if the old Florence is talking. That's who he still tries to hear.
"She said, 'I'm really beginning to worry because there are times when I really don't know where I am and I really don't know what I'm doing,' " Ben translates from a discussion the other day. "She said, 'That's really scary.' "
But Florence never expresses herself with such clarity, at least never when an outsider is around.
Over dinner, Ben switches subjects, recalling a priest they met on a tour called "Catholic Europe." The man took a liking to his wife - they both loved banana splits and developed a running routine about the desserts. Ben found it hilarious. In her non sequiturs now, she often repeats the words "banana split" - and Ben still laughs. In this way, Florence's ramblings are not nonsense to Ben, but a thread picked up from a shared life.
He returns to the work of their conversation.
"Tell me what happened when we started dating."
"Tell me what happened to me."
Florence cuts her napkin with her dinner knife. Ben gives his wife scissors and asks her to use those instead.
He brings Florence back to the start of their courtship, at her mother's house in Scranton, Pa. He remembers all the aunts and uncles coming to meet him and watch him eat. Mrs. Frigione, an Italian immigrant, made ravioli that was so delicious Ben can almost still taste it. He asked for seconds and thirds, only to learn there were many more courses to follow - ham, beef, mashed potatoes, sweet potatoes, green beans. The more he ate, the more he got. Ben recalls all of it and describes it to his wife in mouth-watering detail.
Florence's body tenses.
The napkin is in pieces.
"Let up? This was a compliment," Ben says. "Your mother was a very excellent cook, and this was an unforgettable moment in my life. Your brothers kept serving me anisette - made me choke every time ... "
But Florence won't laugh.
Ben doesn't know exactly what it is, but something inside this story has ripped at his wife like the knife on that napkin. She rises from the table fast, in anger. The fork catapults off her plate, spewing tomato sauce and clattering to the floor. Florence reaches out, wobbling, looking for the counter to steady her as she tries to flee the kitchen.
She still clutches the knife and scissors.
"If you do anything to hurt my children" - she is trembling - "it'll be worse, believe me, it'll be worse."
What's this about? Ben tells her he isn't hurting anybody and tries to meet her gaze. He coaxes her toward him, waiting for her distress to dissolve. As it does, he embraces her. She leans into him.
And, without her noticing, he takes the sharp objects from her hand.
The ghost enters the apartment.
"I had my little dishes, my little china dishes ... "
Ben is kneeling on the living room floor and fiddling with the volume on the stereo. The voice booms from the speakers. The empty cassette box lies near the polka music. Its label reads, "My Dictation: My Life."
"And then of course I had a carriage and a doll - I think my carriage was turquoise as I remember ... "
Florence gazes out the apartment window. It's not clear if she's listening.
But Ben is.
He remembers years ago when Florence first went to their bedroom, sat alone with the tape recorder, reminiscing into the machine. That was a full decade before the first signs of his wife's illness emerged. Ben loved the childhood memories Florence recited in those taping sessions - the boy called "Donuts" who would shut off the lights so he could scare Florence and then kiss her on the cheek, her secret confessions to Saint Anthony that proved a constant comfort in her strict Catholic home, her pride in winning first place in a school minuet contest - even though her pants split during her dance routine.
All of it Florence hoped to get down for her children and grandchildren one day. So, in a voice direct and confident, a voice that sounds much like her daughter's today, Florence wandered into the lush landscape of memory.
It is this voice that fills the room now.
"My father died in 1935 and I would've been what, about 8, 9, 10 years old. My mother did not permit me to see him in the casket so I don't even remember - my only memory was he was a very short man ... "
Next to this ghost, the real Florence looks blurry. At this moment, it is the disembodied voice that seems real.
"My mother was a very strong, beautiful woman ... and how she provided for us all that time was incredible because she made a very happy home life. Oh, she had very difficult rules to live by, but nonetheless she was a very strong woman, very strong ... "
Ben's wife looks at pictures from their recent cruise. The snapshots don't trigger an outburst like the one she had on that vacation, when she accused Ben of cheating on her after he stepped outside for a moment. Even though her husband is always at her side, paranoia about another woman is the stand-in for everything else that terrifies Florence. But not today. Today, her husband is right here. There is nothing to fear.
"I think she imparted all of those values to all of us: that you can do whatever you want to do, do not ever sell yourself short, and be proud ... "
Ben lies on the floor now, listening.
"And follow the way of God ..."
Florence sits on the couch behind him.
"And lead a good life ... "
Her ghost remembers her mother.
"I would often ask her, 'How do you know there's a hereafter? How do you know there's a heaven?' And she'd look at me and say, 'Whether there is or not, if you follow a good, moral path, you can wake up in the morning and be proud of yourself, feel good about yourself, and you don't ever have to be ashamed ... ' "
Ben curls into a fetal position, his body facing the stereo, away from his living wife.
"And I think this is what has led me to a very happy life. I'm always, if you know me at all, and of course I would hope my children know me, that I was always singing and happy - that, that really - I really, I've always had a very positive attitude about life. Fact, I love life so much I really don't want to go anywhere ... "
Ben's body coils tighter, and the voice covers him like a blanket.
"I know I have to, but I would rather not. Because I think each generation will bring so much - so many changes - so many things happening, and I'd like to be around to see them ... "
Ben brings a hand to his face.
"I know it isn't possible, so I guess I'll have to do what everybody else does."
Ben lies with his wife's memory, coiled around the vapor of that person, as if it were only the two of them in this room. He is still with that other woman. He cannot leave her any more than he can leave the living Florence sitting behind him.
The ghost voice is steady as it enters the shadowy thicket where her first fears were born.
"I don't like the dark, never have. I always sleep with a light on - small light, but nonetheless, it's there ... "
The voice describes her mother's talk of spirits and souls.
"And I think I'm subject to dreams because of the things that she would tell me, for example, that her mother would come and visit her, and I would kid her and say, 'Please, don't ever come and visit me ... ' "
In her childhood, there was always a presence of the supernatural, the afterlife, the unknown.
"It did bother me - still does, unfortunately."
Then, as suddenly as they started, the memories stop.
Ben had encouraged Florence to finish her dictation, but she never did. She still had entire chapters of her life that she'd only gotten to glance upon. Hurried notes she made on tape hint at all that went undone:
Talk about the woman who died after she put on her sister's wedding gown and carried wilted flowers, and mention the girl who used to play in the cemetery, and the tale of the contessa, and that lesson about the facts of life on the playground, and the seance in New York with the smell of bread from the vendors on the street below, and those white gloves that disappeared at a funeral and were lost forever ...
But Florence never went back. She never told those stories.
The tape ends with minute after minute of silence.
The undertaker shakes Ben's hand.
Behind the funeral home's heavy drapes, John DeVol keeps the tone efficient. Were it not for the prominent placement of the tissue box - sitting on the desk over the stickers that show Visa and MasterCard are accepted here - Ben could be filling out a driver's license application, not a death certificate.
But today he is dealing with the unpleasant reality of the future.
That future belongs to Charlotte Kleinbecker, the Olivers' former neighbor who is wasting away inside a nearby nursing home. Ben is committing Charlotte's last $5,800 to a prepaid funeral, before the funds disappear and he enrolls her in Medicaid. It's the old red-tape expert in Ben, a former government records manager, that makes him so good at taking care of the details of this stranger's life, and her death.
"Does she have a middle initial?" DeVol asks.
Ben looks toward the ceiling. "Awww, let's see." He fumbles through some papers.
Not important - the funeral director moves on.
"Do you know Charlotte's father's name?"
"What about her mother's name?"
Ben does not answer. Nor can he answer questions about her education, religion, military service.
The undertaker reassures him.
"That's OK. This is not unusual in this type of case."
This type of case. There are Charlotte Kleinbeckers all over Leisure World - women who, by the end of their lives, lose the ability to tell their own story and the friends or loved ones who could have done it for them. Their deaths are like wildfire in the most remote forest - a world vanishes without anyone knowing what ever lived there.
The drive over upset Florence. Ben has placed her on the stiff-backed couch under the window so he and DeVol can talk business. She sits quietly, regaining her composure.
Ben wants to get Charlotte's arrangements out of the way so he can start preparing for what he really enjoys - the ballroom dance just over a week from now. The president of the Leisure World Ballroom Dance Club is excited about the Saturday night Hawaiian-themed affair, his favorite dance of the year. He even wore the cap he had made with the "LWBDC" logo into the mortician's office.
Ben gives the funeral director Charlotte's Social Security number.
"You're a friend, not a relative?" DeVol asks.
Ben explains they only inherited Charlotte's care by default - the kind of oddly intimate alliance that develops between some neighbors at Leisure World. They were close enough to feel responsibility for a woman wracked by illness, but not friendly enough to even know basic details, like where Charlotte's husband, Karl Kleinbecker, was buried. After months of fruitless searching, Ben finally gave up and made the decision: Charlotte will be buried alone.
"What was her occupation?"
Ben remembers that Charlotte worked in the office of her husband's wrought-iron furniture business.
The undertaker writes, "business furniture," getting the record slightly wrong for all eternity.
The body will be bathed and prepared for burial, Ben is assured. Embalming is not required by law, and there is no need for it in this case.
"Sounds great," Ben says.
Florence is quiet, almost invisible on the couch.
Shall she be buried in one of her own outfits?
Ben falters. The undertaker answers for him.
"I'll just say, 'Use funeral home clothing.' "
Good. Does Ben want the concrete liner in the ground? Yes? OK. Pallbearers for the casket? No? Alright. A graveside ceremony, death notice in the paper, limousines, flowers, a book for people to sign? No, no, no, no, no? Fine.
Ben thinks that when the day comes, maybe he and Florence will go to the cemetery, say a few prayers, and leave it at that. No one else would probably show up. Ben explains to DeVol that when Charlotte went into the nursing home, he posted her new number on a Leisure World bulletin board with a note - "Call Charlotte" - but the phone never rang. Not once.
The funeral director is used to sad stories. He nods and repeats: "Nothing."
Florence snaps to attention.
The men keep talking. She interrupts.
"We have to get toward backwards."
"Huh?" DeVol says.
"What?" Ben asks.
Florence sits still again. Ben wraps up his business and prepares to leave. The undertaker looks confused; he doesn't know about Florence's illness. But Ben doesn't dwell on his wife at this moment. Instead, he thinks about Charlotte. He feels relieved. There's regret and sympathy, of course, but he knows the reality of Charlotte's life, how with each passing week more and more of her existence is ruled by dementia, consumed with nothingness.
This is why Ben tries so hard with Florence, takes her to meetings like this one, has those conversations over dinner, tries to get her to remember something, anything to find some way to stop her retreat, bit by bit, into something close to infancy.
"I said," Florence repeats, "I think we have to go backwards."
Ben does not try to explain the enigmatic Florence to the undertaker.
He does not try to explain the mysterious Charlotte.
He does not try to explain himself.
He just moves forward, steadfast, fighting the traffic of two women going in the wrong direction.
The Hawaiian dance is the first thing Ben mentions on this warm afternoon in late July when he spots Helen McKay after parking his car. The kicky neighbor, like him, loves all things ballroom. She walks toward him, her pale skin and white hair shaded by an umbrella. Ben knows by now the dance is full. Billie Saunders, his second-in-command at the Ballroom Dance Club, already has a waiting list. He wonders if Helen made it in.
"Am I going to see you at the dance?"
"Oh yes!" Helen assures him.
The 74-year-old widow has been peering in a neighbor's window to entertain herself during a stroll - one of the daily walks she takes to strengthen her back after a fall at a dance two months ago. She is determined: She will make a comeback at Saturday's luau affair.
Helen is having a strong day, so she tells Ben about one of the resolutions that has come with her pain: She can't move like she did before her injury, she knows that, but she will always find a way to dance. No matter what. Just to prove it, she spreads out her arms and bends her knees.
Florence waits in the car for her husband to walk her upstairs.
Ben stands in the shade, about ready to get her.
And there in the parking lot, grinning like her old self, Helen does the hula.
Honoring old and new
It was in a cemetery that William "Mac" McKean told Mary Straub that he loved her. The widower had taken Mary to visit her husband's grave, which bears Mary's name on its double tombstone, and he couldn't stop the words.
As teen-agers in Washington, Mary and Mac were pals - they can still remember taking a road trip to Georgia, their car getting stuck in a cotton field all those decades ago. But it was just a friendly adventure, and they lost touch and fell in love with other people, starting marriages that for each of them would last more than 50 years.
Mac's wife died in the spring of 2002 after a long illness. Three months later, he called Mary. She understood his grief - she'd found her husband's body on the floor of their Leisure World apartment a few years before. The 80-year-old widow talked about the emptiness of a silent evening, how it's impossible to understand this loss until it happens.
"You tell people you're sorry when they lose a mate," Mary says. "But you never really realize what it means."
Soon, they started to date. After a few months, during a visit to the Bethesda Naval Hospital PX, the 82-year-old veteran bought his girlfriend an engagement band. Last winter, Mac married Mary in the Leisure World chapel.
Before she walked down the aisle, Mary finally pulled off her old wedding ring. She felt it, then, the stab. But there was a celebration, too, with all the children and grandchildren. That day, she took her new husband's name.
Mac lives in the apartment with Mary now. The pair bought a queen-size bed and signed a prenuptial agreement to protect the children's inheritance. They display pictures of their deceased spouses prominently in their living room.
They call it a marriage of four: Mary, Mac, and the partners they still love.
- Ellen Gamerman
A STEP BACK
BEN OLIVER, seaman first class, worked as a lithographer in the fleet print shop at the Pearl Harbor Navy Shipyard and assisted in shipboard printing operations on occasional shakedown cruises.
"I had the world by the tail, no question about it."
A STEP BACK
IT TOOK BEN 10 years to graduate from night school at American University while working days as a federal records manager. Paperwork was his passion. Here, he receives an award at a ceremony for government record keepers.
"We used to concern ourselves with what we called 'federal gobbledygook.' We had a little formula that we used to measure the readability of something and we ended up with a numerical factor that was called a 'fog count.' "
After a career that led him to the National Archives and Records Service as a division director, Ben's crowning moment came at the end of his 37-year government career, when he was appointed to a congressional panel on federal paperwork.
It produced a report.
He swears it was not too long.
About 5 million unpaid caregivers are looking after an elderly American with dementia.
A 1999 study found that caregiver spouses who experience high stress are 63 percent more likely to die than non-caregivers.
A 2001 study showed that elderly caregivers who felt strain before the death of a spouse suffered less stress and better health after their partner died. Spouses who never served as caregivers showed an increase in depression and weight loss after their partner's death.
About 75 percent of caregivers for the elderly are female.
Half of all ailing senior citizens without a family caregiver move to a nursing home, compared with just 7 percent of the elderly who are tended by a family member.
For information: www.caregiver.org
SOURCE: Family Caregiver Alliance/National Center on Caregiving
About the series
In 2003, Sun reporter Ellen Gamerman spent nine months inside Leisure World, a seniors-only community in Silver Spring, learning about what it means to grow old.
She observed every scene described in this six-part series except one. The scene she did not see first-hand - in the emergency room at Montgomery General Hospital - was reconstructed through interviews and is clearly attributed to the memories of the people involved.
All direct quotes in the story were heard by Gamerman; descriptions of what people thought or felt are based on what they said at the time or what they told her in interviews later. During the course of her reporting, Gamerman also reviewed private letters, an audiotaped memoir and home movies.
Ellen Gamerman, 35, joined The Sun in 1994. She has been a correspondent in the Washington Bureau for the past eight years. Her e-mail address is email@example.com.
Chiaki Kawajiri is a native of Japan who came to the United States to study journalism. She became a photographer for The Sun in 1995. Her e-mail address is firstname.lastname@example.org.
On the Web
To read previous stories in the six-part series "Dancing in the Twilight," or to view a photo gallery, go to baltimoresun.com/twilight.
An unexpected turn at the dance. In the Today section.