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Betty Lee’s dementia makes even getting ready for bed an ordeal. Here she heads into a darkened bathroom but becomes so confused that her husband, Cliff, will need to turn on the light for her. He told his friends at support group that he doesn’t get angry at Betty because it’s not her fault, but they urged him to probe deeper: “Don’t you get angry when your life is like this and it’s not what you expected?” Yes, Cliff told them. “I feel like the bottom has dropped out.”

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.


“YOUR DAYS OF CONVERSATION ARE OVER”

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."

     
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