COLUMN ONE : ‘My Life Is Not My Own’ : Caring for an ill relative is a precious labor of love. Emma Williamson is her mother’s mother. Sidney Grayson lived by his vow of ‘in sickness and in health.’ Exhausted, Adele finally placed Murray in a home.

Millions of Americans live in the shadow of sickness.

They are not afflicted with Alzheimer’s nor have they suffered a stroke or other debilitating illness.

Yet sickness has intimately embraced their lives.

When Mom can no longer remember her children’s names or how to use a spoon or say “I love you”--these family members step in to help. When a spouse becomes too infirm to live alone, family is there.

An estimated 10 million Americans have assumed responsibility for their relatives--doing everything from negotiating the Byzantine corridors of insurance to changing diapers. At least 80% of the frail elderly who live at home rely on family members, a number that is expected to grow, demographers say, because the population is aging.

Some take care of their loved ones because nursing homes are too expensive. Others simply refuse to turn them over to strangers.

This is the story of three care-givers, Emma Williamson, Sidney Grayson and Adele. As sickness robs their loved ones of health and sanity, it silently stalks them, month after month, as well.

“My life is not my own anymore,” says Williamson, who cares for her 89-year-old mother. “It’s hers.”

A Daughter’s Role / One Sure Reality to a Jumbled Mind

Williamson dips the spoon into a pile of pureed carrots and slides it gently into her mother’s mouth.

Then she watches.

“How does that taste, Mama? You like that?”

“Uh-huh,” her mother says softly.

In between the spoonfuls of carrots, soft turnips and mushy lamb, Williamson reminds her mother: Hold your head up. Chew your food. Swallow. Don’t talk with food in your mouth.

After the meal is over, Williamson washes her mother’s face, massages and stretches her legs to keep them limber, then rushes to finish the laundry while she naps.

This is Williamson’s life; she is a mother to her mother.

Suffering from senile dementia and confined to a wheelchair, Annie Mae Grant can do little without help.

So Williamson has become everything her mother needs. She is cook, nurse, physical therapist, spiritual adviser, friend, teacher, guardian--she is the one sure piece of reality in her mother’s jumbled mind.

No one knows just how aware Grant is of her dependency on her daughter, but there are small signs.

In between her solitary ramblings--conversations with imaginary people or the doleful “Help me, Jesus,” repeated over and over again--Grant calls her daughter “Mama.”

“And she is like a daughter, she’s not like my mother,” Williamson says, her eyes welling with tears. “I treat her as if she’s a 2-year-old.”

It is a role that requires more patience and prayer than Williamson ever could have imagined, a role that she was not prepared to assume.

“She always worked hard,” Williamson says of her mother, who did domestic work and taught Sunday school for 25 years. “To see her now where she can’t do for herself is mind-boggling. . . . I couldn’t imagine something like this happening to her.”

What is happening to her mother has changed the rhythm of Williamson’s own life.

Now when she goes grocery shopping, Williamson buys adult-sized diapers, the kind without the elastic because the ribbing irritates her mother. She buys coloring books and puzzles to help exercise her mother’s mind. For breakfast, lunch and dinner she places carefully prepared meals in a blender to make them easier to chew.

In the morning, they sometimes battle. Grant protests being washed: “I just had a bath; I don’t need a bath.” Through gentle but persistent persuasion, Williamson always wins. She gives efficient sponge baths, skillfully maneuvering her mother on her hospital bed the way they do in hospitals, pulling the sheets to move her.

Next, she dresses her mother in a fresh cotton house dress with easy snaps or buttons, and a diaper.

“I know what kind of care I give her,” Williamson says, clearly doubtful of the treatment her mother might receive in a nursing home.

But her own tender care has come with a price.

“I’m losing my hair,” says Williamson, 68, sitting in the dining room of her Lake View Terrace home. “I guess it’s nerves.”

This is what she talks about in her care-giver support group at the Pacoima Multipurpose Senior Center: the part of herself that has been lost in the shuffle of sicknesses, the frustration and the grief.

Two of Williamson’s children--a third lives out of state--help whenever they can. Her brother lends emotional support and sometimes takes off work to help, but the job belongs to Williamson, a widow.

“They’re things that you have to learn to live with,” she says. “If you don’t have someone to talk to, you’ll lose your mind.”

It wasn’t always this way. After Williamson retired in 1987 from Lockheed, where she worked as an electrical training instructor and a computer analyst, her days were full: her three grandchildren, golf, fabric-painting classes, sewing lessons, ushering at church, trips in her motor home and jobs here and there as a television extra. Then her mother began to change.

At church, Grant talked loudly during the sermon and during prayer. There was no one to leave her at home with each Sunday, so Williamson stopped going to church.

Eventually she stopped attending the fabric-painting classes. The television work ended, and the new tires on the motor home dry-rotted.

Each major step in her mother’s illness has come after some other traumatic event, a bout with the flu, a fall. Each left her mother less cognizant, and more reliant on Williamson.

After a recent hip operation, Grant was in a wheelchair, physically able to walk, but afraid to even try to stand up.

So now the slender Williamson lifts her 125-pound mother several times during the day in a short but grueling circuit--from the hospital bed to the wheelchair; from the wheelchair to the portable toilet in the corner of the bedroom, from the portable toilet back to the wheelchair.

“I ache all over,” Williamson says, rubbing her wrists. “If I could just get her to walk,” she says, her voice trailing off. “But she won’t.”

Later, sitting on the edge of her bed, Grant seems to listen as Williamson coaxes her.

“I just don’t want to fall,” Grant says, her arms shaking as they rest on a walker.

“Put your arms around my waist,” Williamson says, standing in front of her mother.

“When I say, ‘Stand up,’ we’re going to stand up.

“Stand up!”

Williamson leans down and lifts her mother. Grant raises up halfway, knees still bent, clutching her daughter’s waist.

“Walk, Mama! Walk!”

Hugged together, they inch across the floor, Williamson supporting her mother’s weight as they drag her back to the wheelchair.

“You’re a good mama,” Grant says to her daughter, after plopping back down in her wheelchair. A crooked smile spreads across her face. “Ain’t many of ‘em like you. You’re a good mama.”

No Rest for a Husband / ‘This Is What Happens When You Get Older’

The last time 81-year-old Sidney Grayson rested well was in 1993, he says on a day last winter.

That year, he received a grant from a senior aid program to temporarily place his wife, Thelma, in a licensed board-and-care home.

For 14 days, Sidney slept, knowing that his wife, who has dementia, was safe and well cared for.

“It just gave me a chance to rest,” he says of respite care. “I’m not going to go anywhere. I’m not a golfer. I don’t go to any sporting events. . . . Sometimes at this stage in my life I just want to lie down.”

Last year, the respite program was canceled because of funding cuts, and now Sidney’s sleep comes in pieces--wedged between the demands of tending to his 74-year-old wife, and his own medical problems.

These days his steps are short and stiff, but his back is not stooped and he does not shuffle; he is tired, he admits, but after nearly six years of care-giving he is not ready to give up.

“It said in the contract we signed when we got married, ‘in sickness and in health,’ ” Sidney says this day, sitting in his Woodland Hills apartment. “I believe in that. We’ve had good times. This is what happens when you get older. It could be worse. It could be me.”

He is diligent and methodical about his new responsibilities, clearly proud of the order he has imposed on both their lives. A calendar on the kitchen counter reminds him of his and Thelma’s doctors appointments, of medicine he needs to pick up.

On the kitchen table lies a neat pile of coupons, cut from the Sunday paper, one of the ways Sidney stretches the couple’s monthly Social Security checks.

“I want to take care of her,” says the retired salesman. “I want to do everything I can while I have the vitality and the energy. Nobody can convey that same kind of love that I can. People get paid, they do their job. That’s it. This is something more.”

Dementia has silenced Thelma and stolen her reasoning. She is unable to engage in conversation, bathe or dress herself.

At night and during the day, whenever Thelma heads for the bathroom, Sidney goes too, to make sure she remembers what to do when she gets there.

“The normal is for her to be silent. I can’t just be silent all the time,” he says. “I will converse with her as if she’s perfectly all right.”

And from a distance, they look perfectly all right. A stranger might not notice that Thelma smiles easily and laughs often--but rarely speaks. Laughter is what she does when conversation is expected, when she is introduced to a stranger, asked a question, told a sad story.

But the mist of confusion that normally surrounds her is sometimes interrupted by flashes of awareness, moments that Sidney cherishes.

Today he is recalling the day they first met, how he spotted her on the dance floor at the Roseland Club in New York more than half a century ago.

“We’ve been together for 55 years,” he says proudly. “Since 19 . . .”

He pauses, trying to remember the date.

“ 1939 ,” Thelma interjects correctly.

The look on Sidney’s face says, “See what I mean?”

“She can’t initiate a conversation,” he says. “However, there will be times when she will look at me and say, ‘Your fly is open.’ ”

There is something about the part Sidney plays in his wife’s life that keeps him going in spite of his own health problems.

“I get up with a purpose,” he says plainly. “That’s a helluva lot better than waking up saying, ‘What the hell am I gonna do today?’ ”

Around his house he has planted small reminders that keep him aware of his own needs--and his limitations.

Taped on a shelf above his desk is a copy of the Serenity Prayer:

“Lord grant me the courage to change the things I can, the serenity to accept those I cannot , and the wisdom to know the difference.”

“It’s there so I can look at it every day,” Sidney says, his voice choked with tears, “and know that you’ve gotta make up your mind and distinguish between what you can do something about and what you can’t.”

Now he pushes through each day, greeting loneliness and confinement with remedies that dull the ache but cannot cure.

The red Webster’s dictionary on his desk is faded and worn from all the times he has searched for words to fill in the empty squares of all the daily crossword puzzles he has pulled from the paper over the years.

He reads--bestsellers, books about care-giving, “everything by Grisham”--and faithfully calls relatives on their birthdays and anniversaries.

The couple’s children keep in touch by phone, but Sidney does not expect any day-to-day help. A son lives miles away in Orange County. A daughter is caring for her husband, who has cancer.

Sidney’s help comes twice a week when Thelma attends an adult day-care program run by Organization for the Needs of the Elderly in Van Nuys, the same nonprofit group that providedhis respite-care grant. At the center, the workers greet her with a hug and treat her with understanding.

And while she’s away, he has a little time for himself--time to fall asleep in his chair. Maybe if he had help at night, someone who could help out with Thelma, he could really rest again.

“I take care of her, but if you don’t take care of the care-giver . . . you’ll have two patients instead of one,” he says. “Just give me a chance to rest.”

*

This winter Sidney suffered a mild stroke--and thus ended the last chapter of Sidney and Thelma’s life together.

“He could no longer take care of my mom so we put her in a nursing home,” said the couple’s son, George Grayson of Anaheim Hills.

Thelma lives in a skilled-nursing facility in Santa Ana. Sidney lives in another part of Orange County, rehabilitating in a convalescent home.

“What he did was amazing,” George said of his father, “but it did him in.”

These days, it is George who is making decisions for both his parents.

“It’s scary,” he said. “I’m trying to take it a day at a time.”

A Wife’s Conclusion / ‘If Only God Would Take Him’

In the beginning, Adele thought she knew exactly what to do.

Over the years she had taken care of her mother and then an aunt. She planned to do the same with her husband.

“I was going to be the brave one,” recalls Adele, who did not want her family’s name used. “I was going to take care of him. He was my husband and that was my job. No one was going to tell me to put him away.”

Then the bad times got much worse. After six years of caring for 67-year-old Murray, who had Alzheimer’s, Parkinson’s disease and diabetes, that certainty slowly crumbled.

By the time Adele phoned the Los Angeles Care-giver Resource Center, she was ready to leave bravery--and everything else--behind.

“I was ready to kill him and commit suicide,” she says in a whispery voice, her eyes filling with tears. “That’s what I wanted to do.”

In six years of caring for her husband alone, she watched one disease after another strip him of himself. Left behind was a bare profile of the man who once ran his own general store, who had been president of his synagogue, and had provided his family with a solid middle-class lifestyle.

During those years, the turbulence of Murray’s fading mind rippled painfully through both their lives. He left the bathtub faucet running and flooded their home. He wandered outside. He did not sleep at night, so neither did Adele. He needed help with everything.

Friends who she thought would be there for her were not. Although the couple moved to Los Angeles from New York to be closer to their three children, the help they provided was limited. Adele’s life was slowly swallowed up by her husband’s needs.

“You become a nobody,” she says.

It is winter and she is grappling with guilt for “even thinking of changing my mind” but she has accepted that he must be placed in a nursing home whose staff can care for his worsening medical condition. “At this time, it’s like I can’t, I just can’t do it anymore,” says Adele, 64. “I’m not a whole person. I can’t physically or mentally do it anymore and maybe that’s why I’m having such a hard time in my life.”

Now, the dilemma is how to pay for the care Murray needs.

“I don’t have enough out of my pocket to even make it; that’s why I haven’t put him in a facility,” she says. “We looked into nursing homes, and for someone who has what he has it’s $5,000 a month. That’s $60,000 a year.”

A 1987 congressional study found that 67% of single Americans risk impoverishment by nursing home expenses in the first year of paying out-of-pocket for such care.

Even with his private “Medi-gap” health insurance, uncovered bills related to Murray’s illnesses have taken huge bites out of the family’s savings. His disability insurance had helped, but now that has run out.

The couple have sold the piece of investment property that had prevented them from being eligible for Medi-Cal, Adele says.

“That’s what the government is waiting for, until I have nothing. Then they’ll give him Medi-Cal,” she says. “. . . You work hard all your life and what do you have?”

Before his illness, Murray made the financial decisions and handled the bills. Now the responsibility for the decisions concerning Murray’s health and everything else rests in Adele’s hands.

As she watches medical bills erode their savings and monthly Social Security income, she worries that one day she might have to go on welfare--something that was once unimaginable.

“We lived nicely,” Adele says. “We weren’t rich-rich, but we had everything we needed. We didn’t have to worry about where the next penny was coming from. I just got letters from the bank--five checks bounced.”

For several months a home-care worker has lived with them. Murray spends much of his day lying in a hospital bed in the couple’s Encino condominium. Above him hangs a trapeze that he uses to help pull himself to a sitting position on the days when he has enough strength. A small table next to the bed is covered with bottles of medicine.

Adele sees nothing to look forward to, no cure, no hope of remission. Through it all she has reached a harsh conclusion.

“If only God would take him, it would make it so much easier,” she says. “It’s just not fair that he has to suffer this way. Everybody says he’s not suffering, but sometimes he says to me, ‘What’s wrong with me, what’s happening to me?’ Last night he asked me what his name is.”

One decision Adele will not have to make is about life support. Murray answered that question himself in a will made “before he got bad,” Adele says.

By his request, he will never be placed on life support.

Says Adele: “Nor will I.”

*

In March, following a doctor’s recommendation, Adele placed Murray in a nursing home.

She could no longer provide the kind of care he needed and the strain was affecting her own health.

While Murray was in the nursing home his condition worsened. His backside became covered with bed sores, his blood-sugar level rose dangerously and he became severely dehydrated.

He was hospitalized. After his release, Adele moved him to another nursing home.

“I’m constantly worried if he’s getting the right care,” she said.

Finally, weeks after he was institutionalized, Murray died.

“He died in my arms,” Adele said. “My consolation is that he died in my arms.”