St. Petersburg Times Online: News of the Tampa Bay area
TampaBay.com
Place an Ad Calendars Classified Forums Sports Weather
  • Twister plows through beach city
  • Professors' group may censure USF over Al-Arian
  • Week in review

  • tampabay.com
    Back

    printer version

    Alone together

    A year in the life of an Alzheimer's support group.

    By Story by Stephen Nohlgren, Photographs by Cherie Diez of the Times staff
    © St. Petersburg Times
    published June 9, 2002


    Sometimes love isn't enough.

    When George Hoffman studies Lucille's face, he sees the dimpled cheeks and flowing black hair that caught his eye 62 years ago. He touches her, same as always. When he smiles, she smiles back.

    That's as far as it goes.

    Ten years of Alzheimer's disease have reduced the love of his life to a shell. George has to feed her, he has to dress her, she can't walk without him. If he forgets to set the alarm for her middle-of-the-night toilet runs, urine saturates her diaper and the bed is a mess.

    Lucille can't talk, but George figures she doesn't need to. "I know she is suffering. You think she wants to be like this?"

    One thing is certain: He's exhausted. He doesn't know how much more he can stand. Maybe Lucille could stumble through another year or two, but George is numb. He's beyond frustration or guilt.

    After he settles her down at night, he lies in bed and asks for a favor:

    Please, God, take her up with the angels.

    The keys

    DICK AND GIL met at a roller rink in Massachusetts. He was slender and handsome in his Marine recruit's uniform, soon to ship out to fight the Japanese.

    She was a shy brunette of French-Canadian descent. In halting English, she invited him home for Sunday dinner, a bold but proper first move.

    Like others of their generation, Dick and Gil Nichols shared traditional attitudes about life and love. The husband brought home the paycheck, the wife deferred to his needs. If the road turned bumpy, well, you kept your mouth shut. Problems stayed in the family.

    Decades later, when Dick began saluting photographs and conducting conversations with the TV, Gil wasn't about to share her fears with strangers. She lay awake nights while he wandered their house, wiping down counters. Wipe, wipe, wipe. What is he doing? What will become of us?

    Even when a doctor diagnosed Alzheimer's, Gil circled her emotional wagons. She would attend to her husband herself.

    It took a 1994 Plymouth Acclaim to penetrate her isolation.

    AS DEMENTIA gnawed at Dick's identity, he retreated to the ritualistic comfort of his beloved car. Every day he'd pop the hood and inspect the dipstick. He couldn't dredge up the names of his children, but his hands could still control power and motion. He'd take off to who knows where and struggle to find his way home.

    Gil hid the worst of the driving incidents from her family. But when daughter Cindy visited from Ohio, she tailed her father and saw for herself. It scared the hell out of her.

    Cindy hounded her mother: How could you face yourself if Dad kills somebody? It was past time to get help.

    Reluctantly, Gil let Cindy take her to a nondescript building along U.S. 19 in Pinellas Park, home of the Alzheimer's Association.

    For an hour, Cindy spilled out family troubles to head counselor Cheri Whitaker. Gil just shook and cried.

    Whitaker was adamant about the car keys. The Nichols family must take them away -- immediately. Whitaker even telephoned Houston for reinforcements. Richard Nichols Jr. promised to hop a plane within 24 hours.

    Tears of relief ran down Gil's cheeks. For the first time in years, she wasn't alone.

    THE SON commandeered his father's keys and sold the car. Dick cursed and railed, then happily let Gil ferry him around in her van, joking about having a chauffeur.

    The lesson of the keys was a powerful turning point for Gil. Dick's dementia had crept up -- a little worse this month, a little worse the next.

    The soothing, earthy voice of Cheri Whitaker offered hope. Not that Dick would improve or that Gil's life would turn rosy, just that coping was possible.

    People with dementia deteriorate in distinct ways. One dresses herself but can't recognize her husband. Another fumbles with buttons but nails $2,000 answers on Who Wants to Be a Millionaire.

    The healthy people who love them, though, share similar frustrations. Whitaker told Gil: You should join a new support group I'm forming.

    Come. Talk about your life. You will find relief.

    The Education Of Millie

    THEY GRASP the handrail and climb carpeted stairs to Alzheimer's Association headquarters, their breath quickening with effort.

    They jostle and nudge each other in greeting, squeezing into their usual spots around a wooden conference table: Gil, the Old Hand; Evelyn, the Drill Sergeant; Gary, the Prune Man, and the others.

    This afternoon, Cheri Whitaker's support group, now in its fourth year, welcomes a 77-year-old newcomer, Millie Gundlach.

    She jumps right in:

    "I spent the weekend reading about Alzheimer's. It's so depressing I started to bawl. It's like having an animal in the house. A friend told me not to worry about Stage 3, because they'll have a cure for it by then."

    Guffaws break out at her friend's notion. The media touts this nostrum and that breakthrough -- vitamin E, ibuprofen, vaccines, stem cells, even blueberries. But veterans of the group know that dead brain cells are not coming back.

    Millie's 82-year-old husband, Ralph, stares at Louis L'Amour novels for hours without reading, has lost control of his bladder and can't remember what he ate at day care, no matter how Millie tries to worm it out of him.

    "You don't ask questions," Whitaker tells Millie. "This is part of the denial. You want to converse with him, but your days of conversation are over."

    AN ESTIMATED 100,000 demented people live in the Tampa Bay area. Fewer than 2,000 of their husbands, wives, sons and daughters attend support groups. They don't know such help exists, or they view it as touchy-feely nonsense, or they think they are just too busy.

    So it was with Whitaker's group. Desperation drove them here, hesitant to talk, unsure of what to expect. Only with time have they come to treasure the advice, the camaraderie and the release that comes from sharing.

    When a Millie Gundlach starts coming to meetings, they are eager to teach.

    Rule No. 1: Grit your teeth if you must, but stay upbeat. Your loved one feeds off your emotions.

    Whitaker points to Evelyn Ramm, whose forgetful husband might be the world's nicest man. "Arthur takes 30 minutes to take two bites at breakfast and it drives her crazy."

    Evelyn picks up the lesson. "I've learned to control myself. If I get upset, he gets upset. You have to hold their hands and kiss them. Then I go in the car and scream."

    George Hoffman sets his alarm and awakens his incontinent wife twice in the middle of the night.

    "I say, "Come on, Sweetheart, we got to go pee pee doodle.' I get her slippers and we trudge into the bathroom. I fold up the toilet paper and say, "Come on, Honey, wipe your tush.'

    "Whether you like it or not, you are going to have to be sweet as apple pie."

    Millie doubts she can: "I'm never in a good mood when I get up. I know how it's going to go. I'll tell him, "Don't forget to shave. Turn the night light off.' And he says, "You're always telling me what to do."'

    "What are You telling him to do?" Whitaker asks.

    "He has to brush his teeth, wash his face, take a shower. That's not too much."

    She worries that Ralph might get aggressive.

    "Aggressive behavior is usually caused by our behavior," Whitaker says. "You have to change Millie. Then there will be a big change in him."

    "Well, what if he has barbecue sauce on his cheek?"

    "Then kiss it off."

    Lucille

    PICTURE MR. Magoo if he stopped squinting through those bushy eyebrows, opened his eyes and sparkled with moon-faced confidence.

    That's George Hoffman.

    When he retired, he was set -- stocks and CDs squirreled away, golf clubs ready, cruise ships to board.

    But something wasn't right with Lucille. She couldn't follow the bidding at the bridge table. Her bill paying got all jumbled.

    George watched helplessly as she receded. Lucille lost the melodic soprano that once graced church choirs. She lost control of her bladder. She still squeezes out a few words here and there but mostly stares into nothingness and mutters "Heh, heh, heh," like a car idling in park.

    Lucille's basic functions consume George's life: Sleep. Move. Eat. Eliminate. Forget gardening or even reading the newspaper. Publix qualifies as an outing; George pushes the shopping cart and Lucille trails behind, clutching the belt of his trousers.

    A man of less resolve would have caved long ago, but George is blessed with an ego as big as Montana. Unburdened by bitterness or self-doubt, he rises early and logs marathon hours -- lifetime habits forged in the mining equipment plants he supervised.

    Luckily for him, Lucille never underwent a nasty personality change. Sweet as ever, she communicates with facial expressions a mime would envy.

    She smiles, she winks, she leers. When George irritates her, she shakes a clenched fist. She feigns surprise by widening her eyes and making a circle with her lips.

    When she considers something truly primo, she forms a circular "okay" sign with her thumb and index finger, holds it to her lips and blows it open with a kiss, like a chef pronouncing the cacciatore magnifico.

    George knew about support groups but figured he was too busy. Besides, he was afraid to leave Lucille alone. But when his daughter visited from Virginia and offered to watch her, he finally tried Whitaker's group. Getting away for a few hours of conversation brought George relief and kinship. He hired a sitter to watch Lucille every Tuesday afternoon.

    Now he tries to follow the group's cardinal rule about staying pleasant. No interaction is too mundane for his enthusiastic patter.

    "Okay, Lucille, time to get up," he booms, straining to pull her out of a chair. "That's my girl, give me a kiss. Oh, yeah. Do you want to dance?"

    He pumps her arms back and forth until her face relaxes.

    "Yeah, yeah, yeah," she says.

    George feeds her, seasoning every morsel with encouragement. "You want some of this coleslaw? This is good."

    "Nice, nice, nice."

    Dementia often wipes out inhibitions, and George loves that sexual overtures still excite his 78-year-old wife.

    "Do you know you are my love?" he asks.

    "Bebe, bebe. I want one," she says, rubbing his pant leg.

    He laughs, she laughs.

    "I'm being a bad girl, I guess." It's her clearest sentence of the day.

    Tricks George picked up at support group have helped. When Lucille stopped drinking water, he bought Popsicles by the dozens and she gobbled them up. To free her nightgown from toileting functions, he raises the hem to her shoulder and clips it with a clothespin he keeps on the vanity. He embraces the simplicity of finger food.

    At the Fourth Street Shrimp Store, a waiter tries to take Lucille's order. She mouths some nonsense.

    "I can barely hear you," the waiter says, leaning toward her.

    "She has Alzheimer's," George says, "and she's trying to tell you she wants popcorn shrimp, a mug of beer and fries."

    Lucille eats fries and shrimp with her fingers, then takes after one fry with her fork. She stabs it all right, but fry and fork stop halfway to her mouth. George places another fry in her free hand and gently removes the fork.

    There's magic in this tenderness. Lucille is more than the broken-down reminder of better days. She's more than the willing sex partner who figures in the bawdy stories George tells at support group about their escapades in the shower.

    In her own restricted way, she's charming. Her creamy white face radiates affection through the shroud of her affliction. George gives, but he also gets -- dozens of times a day.

    What he can't overcome are the uncompromising limitations of his 79-year-old stooped-over body.

    He discontinued his daily walks because he couldn't leave Lucille alone. Now he finds himself short of breath. Lucille's nighttime toilet runs interrupt his sleep every three hours; his eyelids droop through the day.

    In their prime, George squired Lucille effortlessly through Latin dance routines. Now, even helping her sit down is a chore because she's unsure of where she'll land.

    As George holds her hands, she hovers above a chair and quakes until, finally, she yields to gravity and collapses. Sometimes, the quaking routine begins before she's centered over the chair.

    "No! No, 'Cille, not yet!" George yells, sucking in breath and straining backward for leverage.

    A bathroom towel bar sets the stage for a maddening tug of war. On good days, it steadies Lucille on her way down. Other times, she clamps onto it and refuses to let go. The louder George yells, the tighter she squeezes.

    He tried adult day care -- once. When he picked her up, Lucille gave him what-for with all the clenched-teeth, finger-wagging fury she could muster.

    No milestone comes harder than placing a loved one in an institution, and George always swore he'd never do it to Lucille. But the clock is ticking. If he hangs on too long, one or both of them are headed for the hospital. Someday soon, he may have to move her out of this house.

    "It breaks my heart. She was such a beauty," George says, turning somber. "She was such an intelligent person. When she'd be all dolled up and we were out on the dance floor, she was the belle of the ball."

    Attuned to her husband's mood shift, Lucille frowns. George notices and reassembles Happy Face.

    "Didn't we have a good time! Didn't we!" he says, grinning at Lucille like a fool. "A rumba! Let me see a rumba!"

    She smiles, wiggles her shoulders and arches her eyebrows in a come-hither look.

    The liar

    JACK GRABLE has an hour to spend with his wife at ManorCare nursing home in Palm Harbor. If he could script the visit, he and June would chat about the kids, sing a few tunes and enjoy each other's touch.

    Then he could walk away at peace.

    But June has her own relentless agenda: She is determined that her husband spend the night. Memory and reasoning have deserted her, but tenacity has not. Try as he might to orchestrate the conversation, Jack is overmatched.

    So he lies.

    "Are you going to stay the night?" June greets him, without so much as a hello.

    "Yes, but I have to go to work first," answers Jack, who retired from running a United Way in Texas nine years ago.

    June points to her single bed. "Will you lay there with me?"

    He obliges as well as his 6-foot-4 frame allows, his feet dangling almost to the floor. June nestles into his shoulder, which satisfies her for about 10 seconds. The litany begins anew.

    "Are you going to spend the night?"

    "Yes, but I'll have to come back. I have to go to work."

    "I thought you were through for the day."

    "I'll be back at 7. . . . Steve (their son) called. They got their house built on the lake."

    "That's nice. Can we still sleep together tonight?"

    "Yeah. We slept like this when we were first married."

    He gets her to sing: "You are my sunshine, my only sunshine . . ." June finishes and Jack shifts immediately into Jesus Loves Me. Again, June follows his lead to the end. He hesitates, casting about for a new song.

    Too late.

    "Now are you going to stay with me tonight?"

    "Yes, ma'am."

    "Even if we have to go to a motel?"

    "I just have to work until 7. . . . You won't get sexy on me, will you?"

    "Don't ask me questions about that," June says with a sly grin. "But you could try."

    SUPPORT GROUP taught Jack Grable that lying can be a virtue. Lying to children is risky because they tend to ferret out the truth and lose trust. But lying to demented people can calm their anxieties and help beleaguered spouses get through the day.

    A woman wrings her hands because she can't find her father. Reminding her that he died decades ago is useless, even cruel. She will grieve her loss, forget he's dead and pine for him again.

    Better: "Your father will be home soon. Let's walk around the block while we wait for him."

    A demented man pesters his wife for sex, but she lacks all energy and desire. Instead of a simple "no," she tells him they made love an hour ago. "I'm not ready yet. We'll do it again tomorrow."

    Jack's moral roots are buried solidly in Midwestern rectitude. His grandfather always told him: Tell the truth and you'll never have to remember what you said.

    But dementia changed all that.

    June criticized Jack relentlessly, shunned friends and terrorized waiters, insisting they refill her iced tea after a few sips. Gone was the woman who once oversaw 900 senior volunteers with tact and grace.

    The more her anxieties mounted, the more she clung to Jack. "I'd go to the bathroom and she'd be right in the doorway waiting. She'd say, "Can't you stop now? You can come back later."'

    Cheri Whitaker persuaded Jack to put June into an assisted living home for five days so he could rest and recharge. The Alzheimer's Association even paid for it.

    "After four days, I said, "I'm not bringing her home.' I didn't realize how emotionally drained I was.

    "I go back to my wedding vows, For better or for worse, in sickness and in health. I signed a covenant and she's my wife. But I can't bring her home because she was killing me."

    AT MANORCARE, an administrator asks June to help set the dining room table, a diversion so Jack can leave gracefully.

    "No!" June shouts. "They can set their own table."

    She turns back to Jack.

    "Honey, will you please come back and will you say I'm the best person in your life?"

    "You are the best person in my life. We were married for 55 years. I'll be back as soon as I get out of here and get my work done."

    "You get to sleep with me tonight. Hallelujah!"

    One on One

    GEORGE'S DAUGHTER, Barbara, the one who pushed him into the group, is in town for a visit. She attends today's meeting to get to know her father's friends.

    In a soft, husky voice, she recites a favorite poem, called "Broken Dreams."

    As children bring their broken toys
    With tears for us to mend,
    I brought my broken dreams to God,
    Because He was my friend.
    But then instead of leaving Him,
    In peace to work alone,
    I hung around and tried to help,
    With ways that were my own.
    At last, I snatched them back and cried,
    "How can you be so slow?"
    "My child," He said, "What could I do?
    "You never did let go."

    Ed Thompson's face reddens. He is next in line to talk but can't get the words out. "I'm having a hard time," he whispers.

    "Is there anything you want to talk about?" Whitaker asks.

    "No."

    "I'll see you later."

    As everyone filters out of the meeting, Whitaker grabs a box of Kleenex and heads toward Ed.

    He is 70, tall, soft of voice and not given to histrionics. As loss control manager for a huge Clearwater insurance brokerage, he tries to keep buildings and job sites safe.

    At work, hours fly by without thoughts of Catherine. Work and support group are his outlets. Then George's daughter goes and recites poetry.

    Whitaker eases into the chair next to Ed and waits. He takes deep breaths, struggling to begin.

    "Yesterday was our 46th anniversary."

    "So, 46 years ago, what were you doing?"

    "Having fun. We went to Miami Beach on our honeymoon."

    "Where did you stay?"

    "The Waikiki Beach."

    These pleasantries calm Ed. Yesterday, he bought Catherine flowers and an anniversary card. "I tried to make it a little special. But she didn't recognize what it meant."

    "You were crying yesterday?"

    He nods.

    "That's good. It's deserving. It's good to cry."

    Ed cared for Catherine at home until her night wandering wore him down. He would wake to find the refrigerator emptied. "The butter was in the linen closet, milk in the bathroom, prunes in the living room."

    He moved her to an assisted living facility, but the $3,000-a-month tab takes a huge chunk of his income. He's worried he can't keep up. "I see the point where I'm not going to be able to work much longer."

    "I can't imagine you not working."

    "No. That's what's keeping me alive."

    "You know you gave her quality of care from Day 1," Whitaker says, stroking his cheek. "You never minced on money. You never complained about it. You sent her to one of the finest places in Pinellas County. So it's you we need to take care of. What are you doing for fun?"

    "Not much."

    He attended Easter services at Bok Tower. Crows and mockingbirds squawked from the trees as the sun rose. A choir sang. A black snake slithered in front of him.

    "It was very impressive, very encouraging. I tried to tell her how we used to go there together. She couldn't comprehend what I was trying to say. It makes for a big empty spot."

    Tears trickle down his cheek.

    "I know religion means a lot to you. That beautiful poem by Barbara was sad. You are going to have a couple of bad weeks, but you are going to be okay, because you are a survivor."

    Ever the gentleman, Ed thanks her for her time.

    "Thank you," Whitaker says. "It's my therapy. I adore you, Ed."

    "I'm glad somebody does."

    "She does, too."

    Cheri

    CHERI WHITAKER always harps on it: Never keep a demented person guessing.

    Wrong: "Look, John, look who's here!"

    Wrong: "Hi, Dad, do you remember me?"

    Very wrong: "Who is this? What's his name?"

    Cheri practices what she preaches when she visits her 82-year-old mother at Suncoast Manor nursing home.

    "Hi, Mom. It's me, Cheri, your daughter. I'm here for a visit," she says, slipping a Snickers to a curly-headed sprite in a khaki jumpsuit.

    Lolli Frazier's room brims with flowers, stuffed animals and drawings she made in art class. Her favorite blue rocker faces a collage of family photos that dominates one wall.

    Cheri shuffles through her mother's dresser drawers.

    "What are you doing?" Lolli asks.

    "Looking for a brush," Cheri lies.

    Like many demented people, Lolli is a pack rat. She collects leaves and paper and stuffs them into her jumpsuit. When her pockets overflow, the dresser is her final repository. Lolli deposits, Cheri withdraws.

    The support group is the best part of Cheri's life. She leads them in old-time songs and group screams. They get mushy and tell her she has preserved their sanity. But few are aware how much they nourish Cheri in return.

    Behind her raucous laugh, dangling earrings and super slim Capri Ultra Lights, behind her veneer of self-assurance, the doctor is a patient.

    Cheri needs the same connection they do, because she is losing a mother.

    "This disease is a killer," she says, slumped in a lawn chair outside the home, having a smoke. "You watch a vibrant, intelligent person disappear before your eyes. I miss her so badly. You want someone you can verbalize with, to cry on her shoulder.

    "That person is gone. The day I hate most is Mother's Day. My mother is gone."

    Ambiguity surrounded Cheri from the beginning. Right after she was born, her father took her 2-year-old sister and moved to West Virginia, leaving Cheri and her mother in Washington, D.C. Cheri didn't see her father for two years.

    His mother doted on the older sister but treated Lolli and Cheri like snakes. On her deathbed, the grandmother offered only one word when Cheri arrived: "Ugh."

    Cheri thinks another man might have fathered her, maybe an African-American. Everyone in her family is fair. Cheri is black-haired and nut brown. In high school, a segregated theater turned her away.

    "I didn't think I was white. I knew I was different."

    Cheri's own marriage spanned two children, degrees in sociology and psychology, a career with Eastern Airlines and a divorce. When she moved to St. Petersburg 12 years ago, her father was long dead, her mother too demented to live alone.

    "I thought it was only going to be a year or two," says Cheri, who is 57 now. "I didn't see it as a sacrifice."

    Lolli lasted longer than her daughter's health: Cheri developed panic attacks and heart problems. Her doctor warned that Cheri would collapse if she kept caring for her mother at home.

    So Cheri put Lolli in Suncoast Manor and took a job at the Alzheimer's Association, fielding calls from frantic children and spouses. The support group gives Cheri attachment. When her friends heal, she does too.

    In the last year, she has grown frustrated with her pay and her life. The medicine she takes makes her feel fat and lousy. She's lonely. She misses her kids and grandkids.

    Visits to the smiling woman in the nursing home offer no help, only emptiness.

    KMart

    GEORGE YELLED at Lucille in the Kmart parking lot last week.

    "I was trying to get her in the car and she wouldn't put her foot in," he tells the group. "A man came by and said, "What's the trouble?'

    "I told him my wife has Alzheimer's and he said, "Well, you aren't being very nice to her.' I said, "Listen, fella, I take care of her 36 hours a day.' And he said, "Well, you aren't being nice.'

    "I threw her foot in the car and off we went."

    Whitaker reassures him: "If you are good 75 percent of the time, that's better than most."

    George glances at his friends. "If somebody at this table says they are good 100 percent of the time, they're a damn liar."

    Taps

    DICK NICHOLS was thriving in the nursing home. Just two weeks ago, he threw his arms out and greeted Gil with "There's my beautiful wife."

    Now he's gone. Pneumonia struck and he died over the weekend.

    No more battles over driving and car keys, no more treks to the nursing home, no more Alzheimer's. Now it's just Gil at Bay Pines Veterans Cemetery, wearing black on a sunny morning.

    Kids, grandkids and friends from support group spill from cars and gather around a white gazebo. A chaplain reads a poem about a soldier gone to the supreme commander. Three rifle volleys drown out the birds and a riding lawn mower putt-putting under distant oaks.

    As in support group, Gil and Cheri Whitaker sit side by side, connected by hands and arms. Gil keeps her composure until a CD player sounds out taps and a folded American flag arrives on her lap. Then she weeps.

    During the brief graveside ceremony, Mary Lorentz hangs back. She and Gil have become intertwined. Their husbands were physically healthy until pneumonia put them into nursing homes. Mary placed Dick in Menorah Manor because Gil spoke so highly of it. For months, they met there and compared notes.

    Mary is rattled, and Whitaker notices. "Are you doing okay?" she asks, rubbing Mary's cheek.

    Mary motions toward the now-empty gazebo. "I could see myself over there."

    After the funeral, family and friends repair to the Nichols' home, bringing wings, sandwiches and stories. Gil sets up shop on her living room sofa, next to her best friend, Viola Schmalz.

    Vi, Gil, Evelyn Ramm and Gary Smith were the support group's original four. Vi dropped out two years ago, after her husband died of cancer. But Gil is adamant: Dick's death will not keep her from the group. She will always go.

    "I love those people. They are my family."

    The swat

    PHIL GERMAINE is working on his temper.

    He tells the group that Carol tried to help with the dishes last week but messed things up. "I yelled, "Will you get the hell out of here and go to bed?' She was teary-eyed. I'm not happy with me."

    This week, he lost his temper while Carol fumbled with clothes. He knows she can't do zippers or buttons, but even elastic waistbands befuddle her now.

    "I'm having trouble understanding why she can't do repeat behavior. I told her, "If you can't find that sleeve, you are just not going to get dressed."'

    "Didn't you go through this?" Whitaker asks George.

    "Yeah. It's very bad," he says. "But you catch more flies with sugar than vinegar. You gotta keep telling them what to do whether you want to or not."

    Then George startles the group. Last week, Lucille latched onto the cursed towel bar and refused to sit on the toilet.

    "I had to give her a whack on her leg."

    "Oh, jeez," Gil says.

    "I pulled up her nightgown and saw red marks where I gave her a swat. It scared the hell out of me. I cut my nails down to the quick. That's what happens when you get mad. I keep telling myself, "I don't know how much longer I can keep doing this."'

    Whitaker wants to deliver a stern message to George but doesn't want to embarrass him. She pretends to address Phil:

    "There are different levels of abuse. I want you to think long and hard about that."

    George gets the point. Not one to back off, he plunges onward. "She may have to get a swat again."

    "Oho! Oho!" Gil says, rolling her eyes sarcastically at George.

    "Hey, are you going to be there to clean up the floor?" he snaps back. "Sometimes that's the only way I can get her to the toilet."

    Phil removes his glasses, rubs his nose and sighs.

    The prune man

    WERE ITS branches intact, Gary Smith's towering oak might shade three back yards. But it's naked at the bottom, naked in the middle and naked as far up as a resolute man with a ladder and a saw can reach.

    Gary wants spit-polish order in his life; not even tree limbs are safe.

    Coin collections sparkle on dustless shelves. Thin carpet covers the garage floor. And woe be to squirrels that vault Gary's freshly painted fence. Inside his sliding glass door, he stocks an arsenal of squirrel bombs -- bleach jugs loaded with rocks that raise an unholy racket when lobbed near furry intruders.

    Tidiness helps when life keeps throwing curves.

    Gary's wife left him 17 years ago. His father, despondent over two heart attacks, jumped out a fifth-floor hospital window. An only child, Gary lives with his 79-year-old mother, Florida, who manages 10 words a day if Gary is lucky.

    She stares impassively for hours, docile and uncomplaining. Gary feeds and bathes her, shaves her legs, diapers her and transfers her substantial bulk from bed to kitchen table to plastic-covered couch.

    During his 58 years, Gary never strayed far from northeast St. Petersburg. His parents ran a vegetable stand a few streets over, he graduated from Northeast High and worked the produce department at the Gateway Publix. His two-bedroom home on 74th Avenue is his last familiar haven.

    "It's just me and my old mom. I guess we're the end of the line in our family."

    Gary takes pride in his labors, and the older women at support group appreciate his toil. Not many sons would get so down and dirty.

    But his frugal spending habits irritate them no end. Evelyn Ramm and Gil Nichols rarely miss a chance to rib him about being a tightwad.

    For months, Gary resisted buying the most effective diapers and stuck with a cheaper, sloppier brand. When the doctor prescribed medication for his mother's constipation, Gary fed her Kash n' Karry prune juice and saved $20.

    "I have great admiration for him," Evelyn says, "although sometimes I'd like to take him and box his ears."

    Chronic tendinitis makes it hard for Gary to stand long. His job prospects bleak, he lives off his mother's money.

    "I'm not skilled at a job that will pay me a lot. It just pays me to stay home and take care of my mom."

    Gary worries that the money won't last until he starts collecting Social Security. He shops for clothes at Goodwill and Salvation Army. TV and newspapers provide his entertainment.

    But even the Prune Man believes he got a bargain when he wrote a four-figure check to a lawyer.

    ALMOST ANYONE can qualify for Medicaid by shuffling money around correctly. But the maneuvers are so complicated that even Cheri Whitaker blew it.

    "I went to the Medicaid office with bills and bank statements, and they said, "No way.' I was the biggest horse's patootie."

    The support group could talk about Medicaid for hours. It is the Holy Grail, the Lotto, the caped warrior who can slay the $5,000-a-month nursing home monster.

    "I put everything into annuities," Ed Thompson says.

    Millie Gundlach consulted some guy at her bank. "He said I should cash in all my mutual funds."

    Jack Grable gave $6,500 a month to his son.

    "Is there a waiting period of a year for that?" George Hoffman asks.

    Such impromptu exchanges make Whitaker squirm with impatience. She knows that strategies that work for one family can ruin another. She pummels the group over and over with the one solution they don't want to hear: Get a good lawyer.

    "Don't listen to your friends, don't listen to what we say. Go see an elder law attorney."

    "That will cost so much," Millie objects.

    "What happens five years from now and you are taking $5,000 a month from your bank account?" Whitaker counters.

    "Here at the agency, we tell people three things: No. 1, come see us. No. 2, get a diagnosis. No. 3, see an elder law attorney. That's how important it is."

    FOR TWO years, Gary resisted Whitaker's blandishments about attorneys. Too expensive, he figured.

    Instead, he used his mother's power of attorney to sell her house and take back a mortgage -- a strategy that backfired because it created a regular income stream in his mother's name.

    Gary ended up paying an attorney several thousand dollars to unsnarl the mess.

    Now he's a convert. Amid his daily worries -- What happens when Mom dies? What if I get Alzheimer's? -- legal fees bought him an oasis of reassurance. The money is protected.

    "If I had to lose this house, I'd jump off the Skyway. This is my whole life. Mom and me and this house."

    Tuna salad

    THEY EAT as they have thousands of times since she got sick. Same table, same chairs, same barn-scene place mats. She waits patiently to be fed, he chatters and fusses with the food.

    But this is it. After lunch, George will move his 78-year-old wife to a nursing home.

    Lucille has no inkling of what this day will bring, but George's face droops with fatigue. He has been up since 2 a.m., worrying about finances and the girl he fell for 62 years ago.

    His hand shakes as he spoons a dollop of tuna salad into Lucille's mouth.

    He talks of his father, who butchered meat for the U.S. government in the Panama Canal Zone. Every three years, the family would visit his grandmother, who ran the telephone exchange in Ohio, and she would weep as they said their goodbyes. "She said it was like we were going to the end of the world."

    That's how George feels now. "This is the beginning of the end. She is absolutely going to be mortified, humiliated, to be put in there with people like that. It's going to break my heart."

    No one event brought George to this point, things just piled up.

    He fell asleep at a red light and woke up not knowing where he was. He pulled into a parking lot and slept for two hours.

    He started washing Lucille from a basin after she became too unstable to stand. That ended their sensual showers.

    Out of the blue last week, Lucille plopped down on the garage floor. George righted her, but she couldn't lift her foot over the 3-inch step to the house. Push, pull, he couldn't get her to move. He finally found a piece of plywood three-quarters of an inch thick, had her step on it first, then into the house.

    His safety margin reduced to inches, George has decided to let go.

    This morning he removed all Lucille's jewelry and slipped her two best gold necklaces over his head and under his checkered shirt -- the first metal to decorate his chest since Guam, 1943, when the Navy issued his dog tags.

    As they eat the tuna salad, he pauses with every bite to stare at her, his jowly face grim and flush. He slides his hand across to touch her; she rubs it, like a mother soothing a toddler's scrape.

    A thick hush sets in, interrupted only by George's sniffles, Lucille's steady "heh, heh, heh" and the chink of his fork against the plate.

    He stretches plastic wrap over the last of the tuna.

    "Come on, Lucille. We're going to get dressed now. We're going for a ride."

    He guides her out of the family room and into their bedroom, away from her worn recliner, away from the duck paintings she bought for his office, away from the hand-carved chest her father, the Navy man, brought home from China, past the hallway photographs of weddings, babies and graduations that marked their lives.

    George piles Lucille's suitcases in their Buick Regal, flips on the radio and heads for Bon Secours Maria Manor. They hold hands while Dean Martin croons Memories Are Made of This.

    At the nursing home, affectionate fanfare greets the Hoffmans. Lucille's mother lived here until her death three years ago, and the staff remembers Lucille's gentle temperament and George's hail fellow nature.

    They walk through the locked doors of the dementia wing and into the two-bedded room about to become Lucille's new home. George's gaze lingers on a sunlit patio.

    "This is beautiful," he murmurs to no one in particular.

    While George completes paperwork, an aide seats Lucille in a common room, where several residents watch a fish tank.

    It's unthinkable to send a child off to kindergarten or camp without a kiss or hug. But people with serious dementia lack the sense of time that imparts meaning to such milestones.

    Holding his emotions under tight rein, George knows he'll break down if he tries to say goodbye, and that won't do either of them any good.

    While Lucille stares at the fish, he strides into the sunshine. Back home, he fixes a vodka martini and tells himself -- for the fourth time today -- that it's all for the best.

    Who are you?

    "CAROL AND I were eating breakfast Monday and she said she had a question," Phil Germaine tells the group. "She said, "I want to know who you are.'

    "I said, "I am your husband. I've been your husband for a long time. I'm Phil.'

    "She asked, "What's your whole name?'

    "I said, "Phil Germaine.' My heart dropped right into my stomach."

    People like Carol, who develop Alzheimer's in their 60s, tend to deteriorate more rapidly than people whose symptoms show up later.

    Phil knows that. But doggone it, Carol looks radiant. She still delights in the Florida Orchestra's pops concerts. Just two weeks ago, she spoke poignantly about how her failing fingers have kept her from teaching piano to her granddaughter.

    Now a light has blinked out. Phil can no longer count on his wife's recognizing him.

    "This is one of the roughest stages," Whitaker says. "Someone who is cognizant but declining, but still has moments of lucidity. It comes and goes."

    The question arose again as Phil and Carol went to bed Monday night: Who are you?

    "I told her I was her husband. I said she wasn't the type of woman who would live with a strange man."

    A pall settles over the group.

    "Catherine doesn't know who I am," Ed Thompson says quietly. "She knows the dog, but she thinks her grandson is her little boy. My son and I are just two big guys who bring in her son."

    Eight days

    When George placed his wife in Bon Secours, the staff advised him to stay away awhile and let her adjust.

    Eight days have passed and George can't stand it a minute longer. On four hours' sleep, he is wired with anticipation. He sails past the gift shop, the beauty shop, the ice cream parlor and punches 491 into the code box that opens the dementia wing.

    Lucille's face has paled, her hair has lost sheen and chunks of it stick up as if she just rose from a nap.

    She frowns at George, confused. He practically yanks her from the chair and blankets her with kisses.

    "What a good girl you are. Want to give me a hug? Did you miss me? I missed you."

    Lucille slides her hands up his arms and into his short-sleeved shirt, hanging on for support. Gradually she relaxes and summons her old expressions -- snippets of word and gesture that keep her connected.

    "Yeah, yeah," she says, smiling. She winks.

    The staff invites them to the patio for a sit-down hula, and George bubbles with excitement. When Lucille's father was in the Navy, she lived in Honolulu and learned authentic hula moves.

    "She'll love this," George says. "I should have brought a Hawaiian shirt."

    On the patio, they sit on plastic chairs, blue leis draped around their necks. A 45 rpm record player cranks out lilting songs.

    "Huki huki huki hukilau," sings the woman on the record.

    George undulates his arms to the music. "Put your hands out. Put your hands out. Hula, hula."

    Lucille scrunches her nose as if she just stepped on a slug. The hula holds no interest; only George does. She smiles, rubs his hand and grabs his face.

    He's crestfallen that she won't hula. "Usually she would at the drop of a hat. She's not at all doing well."

    The battery on her watch has stopped and George fusses with it a few seconds before dropping her hand. "What's the difference?" he says.

    He guides Lucille to her room. She walks stiffly and leans backward.

    His thoughts stray to the talk he had with his children before putting Lucille in the nursing home.

    "I told them she isn't going to last long. I think that's what scares me."

    The renegades

    "YOU'RE SO lucky," people at support group tell Evelyn Ramm. Arthur still dresses himself, converses rationally and is compliant as a lap dog. Put him in a nursing home and he'd outperform some of the staff.

    But Evelyn can barely stand it.

    After her disastrous first marriage, the man who brought sharing and kindness into her life has retreated into childhood. With his Swiss-cheese memory, Arthur latches onto something and gnaws it to shreds.

    "You're going to bump your head on that shelf," he says as they take their seats at the breakfast table.

    "No, I'm not," she says.

    Two minutes later: "You're going to bump your head there."

    "No, I'm not."

    Two minutes later: "You're going to bump your head."

    "I've been doing the same thing for 27 years!"

    "Well, this time you might bump it."

    Her face flashes with irritation, then softens into laughter. Another day with Arthur has begun.

    An 80-year-old retired nurse, Evelyn is known at support group as the Drill Sergeant because of her upright bearing and gruff jokes about whipping her 82-year-old husband into shape.

    Adult day care is her salvation. For six hours, she can exercise, go out with friends or just collapse.

    She got up at 5:30 this morning, made cereal and toast, laid out Arthur's clothes and reminded him to shave, always keeping an eye on the clock. No way she's going to let him miss the 8 o'clock van that represents her freedom.

    By 9:15, Arthur has taken his seat at Lealman Adult Day Center. The precision and know-how he relied on as an accountant have long since abandoned him, but only the human spirit counts here, and Arthur is a star.

    He helps the staff serve breakfast. At one table, a low-functioning man fiddles with a collection of moveable locks, keys and door handles. Arthur serves him an English muffin and whispers conspiratorially:

    "He's practicing to get out of here."

    Arthur holds up a dollar bill and the cover of Time to Rubye Wysinger, a former school administrator saddled with lousy eyesight. He demands she read them, then demonstrates his own visual acuity by reciting the lunch menu off a blackboard 50 feet away:

    "Roast beef with gravy, mashed potatoes, corn."

    He removes his glasses. "I can read it without these. These are just to protect me against women."

    Rubye chuckles: "It must be hard. You are so irresistible."

    As people dance around the room to exercise music, Arthur grabs Julia Slaight's wheelchair and pushes her into the crowd. They joke about forming a club, with T-shirts.

    "We should call ourselves the Renegades," Arthur says.

    "No," Julia says, "the Used-to-Bes."

    Next to Arthur sits Lucy Kasheta, a fidgety 82-year-old who lives alone and thinks her memory is just fine. Her daughter, Carol Ross, joined Cheri Whitaker's support group after Lucy lost 80 pounds and started accusing people of stealing things.

    This is Lucy's first day here and she's not happy. "I have other things to do at home," she tells Arthur, as if he could grant her permission to leave. Through the morning, dance music, card games and a TV tuned to The Price Is Right catch her fancy.

    "Would you like to come back?" Carol asks when she picks her mother up.

    "Now and then," Lucy says, shrugging to mask her enthusiasm. "It's up to you."

    BACK AT the Ramm house, Evelyn takes a walk, runs a few errands and relaxes until 2:15, confident that Arthur is enjoying himself.

    Evelyn turned to day care because Whitaker kept pushing it at support group. It was heartbreaking the first few times. "I would come home and cry. I didn't know what to do with myself. I felt so alone. But it turned out to be a big break.

    "When I hear other people at the group and what they are going through, I thank God I have Arthur," Evelyn says. But without day care three days a week, "I don't think I could stand it."

    The days he stays home, she lets him sleep.

    Bedrooms

    George drags into support group all haggard and coughing. Since he moved Lucille to the nursing home, he has lost so much weight that he's disappearing into his pants.

    "I haven't slept in three nights," he announces.

    "What are you doing here?" Whitaker asks as the others treat him like Typhoid Mary and playfully back their chairs away.

    Whitaker hugs him. "We still love you."

    Phil Germaine eases his chair closer to George. "I'll move back, but I'm not going to kiss him."

    "I wouldn't miss this for the world," George says, "even if I make you all sick."

    George is walking testament to Whitaker's warning that nursing home placement is often hardest on the healthy spouse. The daily grind goes away, but the ache sets in.

    "Are you lonely?" Whitaker asks.

    "Oh, yeah."

    "How are you dealing with it?"

    "I visit her in the morning and the afternoon. I talk to the kids over the telephone. The house is pretty big. You rattle around in it."

    The Hoffmans used to sleep in separate bedrooms because Lucille snored so much. Now that she's gone, George has moved back to the smells and touch of her bed.

    THOUGH WHITAKER says the nursing home phase can be worse than death, Gil Nichols doesn't buy it. Dick died three months ago and she misses him every day. Someone -- she won't say who -- recently questioned why she keeps coming to support group. What good is it for a widow?

    Gil has stewed on it for days.

    "I want to ask a question," she blurts out. "Do you think I should keep coming to the group?"

    She bows her head and shakes as support cascades over her.

    "I don't want you to leave!" cries Millie Gundlach.

    "It wouldn't seem right without you sitting there," Jack Grable says.

    "I do want to come here," Gil says.

    George makes it unanimous: "You better come, or I'll come get you."

    DAYS AFTER dragging himself to the meeting, George lands in the hospital with raging pneumonia.

    The phone rings. Whitaker has hooked up a speaker phone at support group, and 11 voices jabber at him at once: Get well, hurry back.

    Ruth Mooney -- they call her the Pantyhose Lady for an off-color joke she told -- shouts a hello.

    "Is that you, Ruthie?" George yells, rallying now. "Save me some pantyhose!"

    He gets out of the hospital the next day, spent but ready to move on.

    'We'll fold!'

    THE GROUP is about to be tested. Their leader -- their teacher, cheerleader, advocate, nurturer -- is leaving the Alzheimer's Association.

    Cheri Whitaker cannot stand her life. She is lonely and depressed, and her mother offers only sadness and pain. Whitaker needs a change, a big change, or she is going to explode.

    Her medications made her feel lousy, so she stopped taking all 14 of them, including pills for heart problems, high blood pressure, depression and anxiety.

    She moved from her mother's apartment to a motel. Now she has turned in her notice without a new job in sight.

    And the group?

    She plans to lead it as a volunteer, maybe bring in a cofacilitator who can give her a break.

    She churns inside when the meeting begins, planning to drop her bomb at the end. Plastering on a yeoman smile, she makes her way around the table.

    George has recovered from pneumonia and looks chipper. "I wasn't sure I was going to make it. I realize I wasn't eating my three squares a day. I found out I have to do that if I want to be here, and I want to be here."

    Cliff Lee is having trouble with his 76-year-old wife. Betty squirrels pills in her mouth for hours and spits them out when Cliff isn't looking.

    Whitaker suggests hiding pills in applesauce, yogurt, ice cream -- anything sweet -- but Cliff says Betty roots through the applesauce with her tongue and finds the pill as surely as a princess with a pea.

    Last week, Betty vomited brown stuff; the ER doctor said it was dried blood.

    "It looks exactly like dried-up coffee grounds," Whitaker tells the group. "If that ever happens to your loved one, it means there is internal bleeding."

    Cliff has a heart condition, and rushing Betty to the hospital has left him exhausted.

    "Let us give you a week or so of respite," Whitaker pleads. Betty would get care, Cliff would get a break, the association would pay.

    "I don't know how Betty will handle it."

    "Right now, we aren't concerned about Betty. We are concerned about Cliff Lee. You need a good 24 hours' rest."

    Cliff won't commit. He steers the conversation back to medicine the doctor gave Betty to coat her esophagus.

    "He told me to have her swirl it in her mouth and swallow it. You think you can explain that to Betty? She doesn't know how to swallow. It makes me a nervous wreck."

    Whitaker bores in: "Are you going to let us help you before you leave today?"

    Cliff fends her off and the discussion moves on.

    WHITAKER LEANS stiffly into the table and smiles and smiles. She rambles, unable to get to the point. Puzzled faces greet her monologue until George figures it out.

    "She's leaving."

    "Yes. I'm resigning," Whitaker says, her shoulders slumping.

    "How come?"

    "Don't ask. I'm not leaving the group. We will continue together."

    "We'll fold!" cries Millie.

    "No!" Whitaker says, almost shouting. "You are not folding it up."

    "Not without you!" Millie says.

    "You have to be practical. The one thing I don't want is this group breaking up."

    "It's going to," George says.

    "If there's any assistance you need, you are to call this office. Cheri is not the organization. The Tampa Bay Alzheimer's Association is helping you. That is their mission."

    Evelyn Ramm, the group's Drill Sergeant whose cool reserve never yields to sentimentality, grabs Whitaker around the shoulders.

    "We love you," she whispers.

    The meeting is over but nobody wants to leave. Whitaker ignores the hubbub, taking one last shot to prod Cliff to get help. She clasps her fingers as if in prayer and bends toward him, begging him to put Betty in an assisted living home.

    "This is going to make you sick. You leave and you go straight there."

    "I can't. Friends are watching Betty. I said I'd be home at 3."

    "They won't care. Go straight there."

    At the other end of the table, Jack and George puzzle over Whitaker's announcement, wondering how much longer she'll stay. Evelyn comes up.

    "We'll do the best we can," she says. "We have to."

    Bryant

    WORRIED FACES flank the conference table as an earnest young man takes his seat -- in Cheri Whitaker's old chair.

    When she quit her job here three weeks ago, Whitaker promised to continue leading the group as a volunteer. She also told them to stick together no matter what -- an ominous instruction that has everyone on edge.

    It's hard to imagine this support group without Whitaker, their anchor since they began meeting five years ago. Could their bond hold firm without her?

    They are about to find out. She has left town without a word to any of them.

    Offering no specifics, association director Gloria Smith says Whitaker is struggling with personal problems and has moved to Fort Lauderdale to stay with her daughters and grandchildren.

    "Just like all caregivers, she needs a break. She is taking care of herself and living by her own advice."

    Bryant Brown will take over. He's trained in psychology and social work, but at 26, he lacks the group's experience by a half-century. Vietnam is a history lesson, much less World War II and the Depression. He addresses George as "Mr. Hoffman."

    Then again, as an aide in a Kentucky nursing home, Brown doled out food and wiped bottoms. Dementia was his livelihood.

    Gil Nichols, who volunteers at the association, knows Brown and gives her nonverbal endorsement. They sit together and touch hands, as Gil always did with Whitaker.

    Brown says he will let them control the discussion, and George is happy to oblige.

    When Phil Germaine stretches out a story about pills, George grows antsy and calls on Ed Thompson right while Phil is talking.

    Another man rambles on. Because he attends support group so rarely, Whitaker always let him vent, no matter how long it took. But George is warming to his role as impromptu conductor. When Venting Man pauses for a deep breath, George calls on someone else.

    Brown tells the group he plans to bring in educational materials and speakers. Is there anyone they would like to hear from?

    Gil, who hung her head throughout the meeting, perks up: "Maybe you can get Cheri to speak to us."

    Where is Harry?

    FOR THREE or four weeks the meetings meander as Brown and the group size each other up. Multiple conversations take place at once. Ed Thompson does paperwork and leaves the room when his cell phone rings. Millie and Jack get so frustrated they think about quitting.

    Brown gradually exerts control, ringing a bell when people interrupt. He goes around the table, calling on them one by one. Poignant moments return.

    George: Lucille has been refusing food at Bon Secours, even strawberry ice cream. He groused at the staff until he tried to feed her himself.

    "She wouldn't eat for me either. I had to apologize to aides. I thought they weren't doing their jobs, but I had to put my tail between my legs."

    Mary Lorentz: Dick snapped out of his nursing home funk and surprised her with a precious moment of lucidity and permission.

    "He asked me if I was okay alone at home and is the car running good. He said it was good that he's not at home and that I don't have to take care of him anymore.

    "I said, "Are you sad that I'm leaving you here?' and he said no, he realized that's where he had to be."

    Evelyn Ramm: She tripped on shoes and smashed her head on the laundry room floor.

    "My nose was all bleeding. I was yelling to Arthur to help me. I couldn't get up. I don't know if he didn't hear or didn't understand, but he wouldn't come. He finally came and there was blood all over. His biggest thing was cleaning up the blood with a towel, not helping me up.

    "It just hit me: What kind of life am I leading? I was feeling like my life was just going."

    Ruth Mooney, the group's 81-year-old ham, frequently jokes about wandering: "I just leave the door open, but Harry refuses to leave."

    Today, she is talking about her husband's eating habits when Phil Germaine interrupts to ask where Harry is.

    "At home."

    "That's a no-no," Phil says. He left his wife at home when he first came to meetings and the group practically ordered him to find a sitter.

    "He can walk around the block by himself," Ruth insists.

    "That's worse!" George chimes in. "You can't do that."

    Ruth playfully holds her ground: "So I'm apt to be put in jail for neglect?"

    "You could be," George says. "You don't know."

    Myrna Seddon, who just joined the group, closes ranks with Ruth. "I leave my husband. He doesn't get out of the chair. You go to the bathroom and they're alone for five or 10 minutes. They could be down the block."

    "He could turn on the stove," George says.

    "He can't turn the stove on."

    "Bryant, speak up!" George says, seeking an ally in the group's new leader.

    "There are a lot of concerns," Brown says quietly. "If there's a fire, would they know how to call 911? They may not have wandered for five years and then just get up and go."

    Ruth says a social worker is assessing Harry, "but he says he'll shoot every damn doctor he sees."

    "Do you have a gun in the house?" George asks.

    "Yes," Ruth deadpans, watching George turn apoplectic . . . before explaining that it's an old shotgun with no ammunition.

    Because I love you

    CAROL GERMAINE, passing rapidly through early-onset Alzheimer's, tells Phil she wants to go home. Phil tries to convince her she is home, but she keeps asking. One day, while Phil works in the yard, she wanders around the block.

    Phil asks the group: How do I keep her from wandering?

    "Home means safety, comfort, family, warmth," Bryant Brown says. "Maybe they are cold or need to go to the bathroom. Try fibbing. Say: You just came home. Do you need to go to the bathroom?' Redirect them, and when all else fails, give them a candy bar."

    The Alzheimer's Association and Walgreens give out free identity bracelets, but Phil has resisted. It seems so demeaning, like something a dog or cat might wear. How would Carol react?

    "Get her a little fuzzy box, like it's jewelry," Brown suggests. "Give her a flower with it. Tell her, "It's just because I love you."'

    Carol hardly recognizes Phil these days. He's just a guy who takes care of her. She particularly dislikes having a man help her put on underwear. "I hate guys like you," she grumbles.

    Other times, she appreciates the stranger in her life. After Phil cooks spaghetti one night, she whispers to her daughter, "I think I'm going to ask him to marry me." She sings him a coy tune: "Getting to know you, getting to know all about you . . ."

    Phil would delight in such tenderness if they were back in college, just starting to date. Instead, he must stifle his hurt and manage her behavior. He asks the group: What do you say when your wife of 45 years asks, "Where is my husband?"

    "Tell her he'll be back in five minutes," Brown advises. "Then go out of the room and come back and say, Honey, I'm home."'

    Speaking the unspeakable

    IN THEIR hearts, group members harbor an unsettling thought. Around the conference table, they can say it out loud.

    "I pray that Harry dies," Ruth Morgan says. "The quality of life just isn't there."

    "So I can't be completely wrong," Millie Gundlach says. A neighbor chastised her for hoping for a quick end for Ralph, who is declining fast in a nursing home.

    "He is suffering. He isn't my husband. But I hurt my children by saying that. I won't ever mention it to my children again."

    George always feared Lucille wouldn't take to nursing home life, and he was right. She stopped eating and has lost 26 pounds. George has ruled out tubes or machines, and nurses give her 40 days.

    "I love my wife, but I still pray every night that she goes up above," George says. "I can even talk about this now without crying.

    "To hell with the neighbors!"

    The vigil

    DEATH IS respected at Bon Secours Maria Manor. No tiptoeing, no whispering, no drape pulling. When staffers think a resident will die within three days, they begin a service they call "Angels Passing By."

    Aides stay in the room around the clock. They bring in a CD player for soft music, an angel pin for the pillow, lotions for rubbing, and a journal so people can write messages.

    It's late on a Friday night, and Lucille Hoffman shares her pillow with a tiny metal angel.

    She weaves in and out of sleep. Her legs twitch. George cups her chin in his hand, strokes her hair and kisses her forehead.

    "You liked everybody. I don't think you had an enemy. Do you? Do you?"

    She rubs his cheek and sniffs her fingers for his familiar Old Spice.

    Lucille began rejecting food after George put her in the nursing home four months ago. A brain riddled with advanced Alzheimer's sometimes can't signal the mouth to swallow. But George and his children offer a more comforting explanation:

    After 10 years of helplessness, Lucille is willing herself to die.

    On Saturday, George conducts a long-distance argument with their 55-year-old daughter, Barbara Deal, who lives in Virginia. She wants to drive to the bedside, but George is the worried parent, grumbling about women alone on the highway. Barbara stops answering her phone and George figures she's on her way.

    An aide offers Lucille a dab of Italian ice, but she pushes away the spoon. Contrary to popular belief, dehydration makes dying easier, because the body releases natural pain killers.

    Barbara rolls in at 2 a.m. Sunday. Lucille calls her name and smiles. As Barbara strokes her mother's brow, Lucille wraps her arms around her neck and pulls her down in a tight hug. George and their son Bill come to the bed. Lucille pulls each of them down as well.

    "I think she knew it was her last shot," Bill says. "I think she stored up all her energy to say goodbye."

    Before the sun rises Monday, Lucille lapses into a coma -- head thrown back, mouth open, eyes unblinking. Soft, shallow breaths rattle through her chest.

    George indulges in dozens of kisses. "It's a blessing," he says. "No more worry about what sentences mean. No more worry about going to the bathroom and eating. No more showers to clean off the shit."

    Bill thinks of good times, like when his mother gave him dance lessons. "Women would ask me where I learned to dance. I'd say, My mama and Lawrence Welk taught me."'

    The nurses have told the Hoffmans to expect a final gasp when Lucille dies. They wait for it all day. By early evening, they debate whether some of them should go home and sleep in shifts. A nurse feels Lucille's cold feet and suggests they wait.

    Two hours later, Lucille's breathing slows dramatically; 30 seconds pass between breaths, then 40, then one long pause.

    Bill kisses her. "'Bye, Mommy."

    "Her job is finished," Barbara says. "A good and faithful servant, you are being called. Dad, push the call button to get a time of death."

    George just stares. "She's gone."

    Bill tries to close Lucille's eyelids, like in the movies. George tells him to stop. Bill persists, but the eyelids won't close.

    "Stop it!" George yells.

    Lucille takes another breath, as if she won't leave while the two of them quarrel.

    Five minutes later, her breathing stops again.

    "We're right here, Sweetie," Barbara whispers in her mother's ear. "When you are ready to say goodbye, you can go. We loved having you in our lives."

    A nurse confirms that the heartbeat has stopped.

    "Goodbye, Sweetheart," George says, a tear dripping from his nose. "She always gave me that little smile, and that A-okay sign. She couldn't talk to me."

    "She's A-okay now," Barbara says.

    The soft viola music on the CD comes to the end. George hugs Barbara and wanders glassy-eyed into the hallway, looking for guidance. Should they notify the doctor? Do they wait until the funeral home people pick up the body?

    That might be hours, the staff tells him. It's okay to go home.

    "My love is gone," George tells his son. "There are a few people I gotta call."

    Wooden chairs

    Terrorists brought down the World Trade Center two days ago and the world has turned crazy.

    The sky is prematurely dark as Tropical Storm Gabrielle bears down on Florida's west coast. Whenever the door of Anderson-McQueen Funeral home opens, rain gusts in with clumps of mourners.

    Inside the hushed chapel, Lucille Hoffman, in a new green dress, lies in a cherry wood coffin.

    Cheri Whitaker arrives early, having driven through the deluge from her daughter's house in Fort Lauderdale. The former support group leader has cropped her hair and lost weight and makes for a most welcome surprise for George. They stand arm in arm at the coffin and talk softly about Lucille's final days.

    Neighbors, friends and elderly cousins filter in and chat with George and his children, Bill, Barbara and Jim. The conversation is polite and subdued.

    Members of the support group arrive, shaking out their umbrellas. George's face lightens, his voice becomes animated.

    "Hey, Ruth," he calls to Ruth Mooney, the Pantyhose Lady. "I have 30 pantyhose now with nothing to do with them. You can have them all."

    Yesterday morning, Jack Grable called George just to check on him. When Jack found out about Lucille, he called Ed Thompson and the two of them told everyone in the group.

    George ushers Gil Nichols to the coffin.

    "You've never met Lucille, but you are going to meet her now. Lucille, this is Gil."

    Gil kneels on a prayer bench and speaks of Dick, who died a few months ago after a sudden bout with pneumonia.

    "He's going to meet your wife up there," she says. "They are both in a better place."

    Gary Smith wears his green suit for the first time in two years. This is the last place he wants to be: When his father killed himself years ago, the funeral took place in this same room.

    Gary tries his best to console George but can barely speak. His face contorts in pain, his body quivers. "She looks good," he finally manages.

    George ministers to him. "Yup. She's upstairs and she's looking down on us all."

    "I shouldn't be so emotional," Gary says.

    "There's nothing wrong with crying. You just got to let it out."

    Gil sits near the front and stews about Whitaker. For years at support group, Gil always sat to her right. Not a week passed without the two of them holding hands in friendship.

    Two months ago, Whitaker abruptly left town to stay with her daughter. She hasn't communicated much with anyone in the group, and no one has communicated with her. Everyone signed a "thinking of you" card, but Whitaker says she never received it, and her nerves are tender.

    When Gil arrived at the funeral home, she passed within a few feet of Whitaker but neither said a word, waiting like schoolgirls for the other to make the first move. Both feel snubbed.

    Finally Whitaker approaches Gil with her arms out. Gil hesitates, then steps into her embrace.

    "I left you messages," Whitaker says.

    "Only one!" Gil says, almost accusingly.

    "Two!"

    "Well, shit happens," Gil says, still a bit standoffish.

    The ice broken, they begin to talk and, occasionally, touch.

    The service begins. George and his children sit in the front row. Friends and relatives are sprinkled on wooden chairs around the room.

    Halfway down the right side, the support group has staked out its territory. Except for Myrna, who just joined the group, everyone is here -- Carol and Lucy, Gil, Mary, Millie, Evelyn and Arthur, Ruth, Jack, Cliff, Phil, Gary and Ed.

    They line 21/2 rows, without a space separating them.

    A deacon at Holy Family Church invokes "the ties of friendship that bind us through life" and begins to pray.

    Shoulder to shoulder, they bow their heads.

    Moving on

    Support group has no beginning or end. New members join, others move on. If a year teaches them anything, it is how to let go of broken dreams. Tomorrow will be different.

    * * *

    Mary Lorentz, Cliff Lee, Jack Grable and Ed Thompson still have their spouses in nursing homes. Phil Germaine moved Carol into Bon Secours three months ago.

    Ruth Mooney and Evelyn Ramm still care for their husbands at home; Gary Smith still cares for his mother at home.

    Millie Gundlach's husband died in January. She attends meetings occasionally.

    Carol Ross, whose husband has been ill, has not attended meetings for months.

    Myrna Seddon joined a different support group.

    * * *

    Cheri Whitaker lives in Fort Lauderdale and serves latte and biscotti at a Barnie's coffee in the mall, far from the world of Alzheimer's. She still drives to St. Petersburg to visit a white-haired woman who struggles to recognize her: "I will feel better when Mother dies. It's always hanging over my head."

    * * *

    George Hoffman faithfully attends support group. He has made a few unfruitful forays into geriatric dating, even picking up a sample of Viagra at a Senior Expo. After escaping one date that turned sour, he thanked a photograph of his departed Lucille. "I think she is directing me somewhat."

    * * *

    Gil Nichols volunteers at the Alzheimer's Association and Bayfront Medical Center. She wears her husband's wedding ring on a necklace. Her house sports new carpet, and the bed she and Dick shared for 49 years went out the door. Though she swore she never would leave the group, she quit eight months after Dick's death: "I don't need to hear that anymore. I should leave room for somebody who needs it."

    What is dementia?

    Everybody loses memory capacity as they age. Dementia goes beyond that. Brain cells die or suffer serious damage, resulting in loss of memory production and storage, loss of reasoning, loss of bodily function and, ultimately, death.

    Strokes, head injuries and other conditions can cause dementia, but the main cause is Alzheimer's disease. Roughly one in 10 people older than 65 has Alzheimer's; about half of people older than 85 have it.

    No cure for Alzheimer's exists, but medications can slow its progress. Early diagnosis is critical. General practice doctors sometimes make an initial diagnosis, but experts recommend testing by a neurologist, psychiatrist or diagnostic clinic.

    A complete diagnosis should include blood work and other lab tests because vitamin deficiencies, thyroid disease and other curable conditions can create symptoms that mimic dementia.

    Support groups deal with all types of dementia, not just Alzheimer's.

    Dealing with dementia -- some tips

    Stay pleasant. Someone with dementia tends to mirror your mood. Your tone and demeanor communicate more than your words.

    Treat them with respect. Don't talk about them in their presence. Don't use "cute talk" or call them "sweetie" or "young man." If you don't know them, call them Mr., Mrs. or Miss.

    Communicate clearly. Talk slowly, in normal tones. Use short, simple sentences: "It's time to eat." "Please sit in that chair."

    Use friendly body language. Laugh, smile and touch them, unless they clearly don't want to be touched. Physical reassurance is usually a powerful tonic.

    Be patient. Give them lots of time to respond.

    Let them do for themselves. Folding laundry, planting flowers, etc., gives a sense of self-worth.

    Approach from the front. Make eye contact before talking. Communicating from behind or from the next room can rattle them.

    Avoid the word "remember." Wrong: "Remember Aunt Sue?" Right: "This is Aunt Sue, your best friend from Wisconsin."

    Ask yes or no questions. Wrong: "What would you like to do today?" Right: "Would you like to go for a walk?"

    Break instructions into pieces. Wrong: "Go get undressed." Right: "Come into the bedroom, please. (pause). Take off your shirt (pause). Take off your pants."

    Don't explain yourself. Wrong: "I bought apples on sale. They went brown, so I made a pie." Right: "I made an apple pie. Do you want some?"

    Don't try to orient them to reality. Wrong: "This is your home now. You haven't lived in Michigan for 15 years." Right: "Isn't Michigan beautiful in the fall? We can go there as soon as I buy airline tickets. Do you want some ice cream?"

    Play soothing, familiar music. Big band, Sinatra, patriotic music, church music. If they like TV, tune to calm programs. Avoid violence, contention and loud programs. Soothing: Wheel of Fortune, Price Is Right, Lawrence Welk. Disturbing: Jerry Springer.

    Accept body language as communication. If he clenches his fist, he may be in pain. If she is agitated, she may be hungry or cold. Try to diagnose the problem.

    If they are angry at you, apologize. "I forgot to buy the tickets to Michigan. I'm so sorry. I'll work on it first thing tomorrow."

    Use finger food. Put out small portions of limited choice. Eat more, smaller meals. Don't spoon feed unless absolutely necessary.

    Hide pills. If they resist taking pills, hide them in applesauce, ice cream, anything sweet. Some pills can be ground up and mixed with food; others cannot. Consult a doctor or pharmacist.

    Shower with them. If they resist bathing, make showering a loving moment.

    Government help

    State and federal programs help with home care, transportation, meals, respite and other services. To find out about these programs, call:

    Pinellas: Neighborly Senior Services, (727) 540-0919

    Hillsborough: West Central Florida Area Agency on Aging, (813) 740-3888

    Pasco: Community Aging and Retirement Services, (727) 862-9291, option 1

    Hernando: Elder Helpline, (352) 796-0485

    Citrus: Senior Care Services, (352) 527-7640

    For comparative information about nursing homes and inspection results, call Florida Medical Quality Assurance Inc. toll-free, 1-866-800-8767.

    Web sites

    www.alz.org

    The Alzheimer's Association's nationwide Web site. Loaded with tips, research updates and other useful information.

    www.Medicare.gov

    Medicare's site. Click on "Nursing Home Compare" to check out the homes in your county, including inspection results.

    www.fdhc.state.fl.us

    Florida's Agency for Health Care Administration regulates nursing homes. At top left of home page, click on "Medicaid" for information about drug programs for low-income people. At bottom left are "Nursing home guide" and "Nursing home watch."

    www.AlzOnLine.net

    Interactive site run by the University of Florida and Florida Department of Elder Affairs. Join discussions and get questions answered, like a support group online.

    www.nfcacares.org

    The nonprofit National Family Caregivers Association provides free information, product discounts and a newsletter.

    About this story

    Reporter Stephen Nohlgren and photographer Cherie Diez followed an Alzheimer's support group for a year, taking notes and photographs with the understanding that no one's story would be used without his or her consent.

    At first, many in the group wanted no part of publicity. Dementia is ugly and maddening enough without baring your life to the world.

    As the year progressed, everyone in the group came to believe they could make a difference. They wanted husbands, wives and children who share their lot to understand how their support group helps keep them sane.

    Scenes described here come from personal observation and interviews with group members and their families. Group members previewed the story for accuracy but had no control over content.

    Some of the higher-functioning people with the disease were capable of deciding whether to participate. None objected to having their names and pictures published, along with details of their circumstances. Those who could not understand were told about the story anyway. Their loved ones agreed on their behalf.

    Photo editor: Sue Morrow

    Designers: Christian Potter Drury, Ken Walker

    Copy editor: Jody McMaster

    Editor: Richard Bockman

    Meet the caregivers, learn about dementia

    Caregivers from this story will participate in two free community forums about dementia. Also, experts will discuss diagnosis and treatment and will share tips on caring for people with Alzheimer's.

    Here is the schedule:

    -- Monday, June 17, 2 to 3:30 p.m., Campus Activities Center, USF St. Petersburg, corner of Second Street and Sixth Avenue S.

    -- Monday, June 24, 1:30 to 3 p.m., Performing Arts Center, Pasco-Hernando Community College, 10230 Ridge Road, New Port Richey.

    The forums are sponsored by the St. Petersburg Times in cooperation with USF St. Petersburg, Pasco-Hernando Community College and the Alzheimer's Association -- Tampa Bay Chapter.

    Where the support groups are

    Three nonprofit organizations run dementia support groups in the Tampa Bay area:

    Alzheimer's Association -- Tampa Bay Chapter

    (727) 578-2558, toll free 1-800-772-8672

    Offers emergency respite care, one-on-one counseling, educational packets and nationwide "Safe Return" program for wanderers.

    Relies on donations and needs volunteers to answer phones. Needs and will train support group facilitators with no experience.

    Main office: 9365 U.S. 19 N, Suite B, Pinellas Park.

    The Alzheimer's Family Organization

    (727) 845-6262, toll-free 1-888-496-8004

    Primarily in Pasco, Citrus and Hernando counties. Offers respite care and other services. Accepts donations and volunteers.

    Main office: Claude Pepper Senior Center, 6640 Van Buren St., New Port Richey.

    Neighborly Senior Services

    (727) 540-0919

    Back to Tampa Bay area news
    Back
    Back to Top

    © 2006 • All Rights Reserved • Tampa Bay Times
    490 First Avenue South • St. Petersburg, FL 33701 • 727-893-8111
     
    Special Links
    Mary Jo Melone
    Howard Troxler


    Headlines
    From the Times
    local news desks