Tanya Shaw has begun the terrifying descent into AIDS dementia. So far, attempts to find a home for her girls have failed and she knows she’s . . . : Running Out of Time

The voice had the recognizable quality of slurred hysteria. It was late afternoon, that danger zone just before dusk when fatigue and failing hopes hit Tanya Shaw hardest.

“Going to the hospital,” she said over the telephone. “I hurt my arm.”

For an AIDS patient with multiple complications, “I hurt my arm” could be anything from life-threatening to simple paranoia. For Shaw, the state of emergency is more difficult to gauge: She’s begun the steady decline into AIDS dementia.

Two months ago--full of fevered energy and desperate to know her two young daughters would be cared for--Shaw tried to start an adoption referral agency, Tanya’s Children, for parents with AIDS.

That was before the opportunistic infections settled in her brain, causing a variety of symptoms known as AIDS dementia. And before Shaw found out how difficult, how taxing, it would be to make her dream come true.

*

When Shaw’s story first appeared in The Times in April, a kind of magic happened. People called, offered money, asked about adopting Destini, 8, and Chassidy, 2, or volunteered for the fledgling assistance program. National television news magazines pressed Shaw for interviews. Just out of the hospital, she found new life in the attention.

Directors of the Los Angeles Center for Living answered a prayer when they said Tanya’s Children could operate under their agency’s umbrella. Shaw knew she had neither the energy nor experience for the details.

The only thing Shaw wanted, all she really talked about, was a fund-raising banquet for Tanya’s Children on Mother’s Day.

“This is probably going to be my last one,” she said. “I’m not promised next year.”

On April 9, David Kestler, president of the Center for Living’s board, sat at the foot of Shaw’s bed and said, “We can do that.” The Mother’s Day party, the adoption referral agency, everything seemed within her grasp.

And that night, Shaw met with a couple from Burbank who wanted to adopt the girls. Next day, they backed out. But that was OK, there would be others.

*

Monte Hallis and Erin Ellwood have been Shaw’s friends and protectors for the past three months. The women met through a friend who did volunteer work at Rue’s House, where Shaw stayed while overcoming a drug dependency and facing up to AIDS.

When the deluge of calls came in--so many people wanting to help--Hallis and Ellwood shoved their lives on the back burner. They negotiated with the Center for Living, directed adoption inquiries, juggled the media and tried to protect Shaw’s original vision. Ellwood and Hallis, and later, Laney Gradus, sought out lawyers and administrators in the nonprofit field for advice.

But the agreement between Tanya’s Children and the Center for Living has been slow in coming. There have been questions about publicity, administration and control.

“They (Ellwood and Hallis) called and told us to slow down,” Kestler says. “They wanted us to put the brakes on until we had an agreement. We said, ‘Fine.’ ”

There were the predictable offers to produce Shaw’s life story as a television movie of the week. And a marriage proposal from an inmate. At least two different groups wanted to mount fund-raising events, and each required planning talks and background checks.

Everyone tried so hard to help.

Suddenly, it was two weeks before Mother’s Day. Shaw met with a couple in Corona who wanted to adopt Destini and Chassidy. The families met at La Brea Tar Pits and liked each other immensely. It didn’t matter, Shaw says, that the couple was white and she and her daughters are black.

They planned another outing for Saturday, May 2. But on Wednesday, a jury in Simi Valley said four police officers were not guilty of beating Rodney G. King.

By Thursday, Shaw’s neighborhood, on the edge of Koreatown, was under siege; buildings burned a block away. Chassidy wouldn’t go to sleep, no matter how many times her mother said it was going to be OK.

On Friday, “the new family” picked up Shaw and her daughters and took them home to Corona for the weekend.

After they returned home, the couple called Monday to say it was just too much; they were trying to raise a 2-year-old and three kids seemed beyond their capabilities.

Shaw told Destini they would be looking for a new family. The 7-year-old seemed to accept the news easily, although one week earlier, Destini had said she didn’t want to live with anyone but the Corona family.

From April’s heady excitement, Shaw crashed into May. Two days until Mother’s Day and no agreement had been reached between Tanya’s Children and the Center for Living; there would be no banquet, no press conference, no celebration, Shaw learned.

Hallis and Ellwood tried to make up for it with a Mother’s Day dinner at their home, but it wasn’t the same. Shaw spent more time in bed; her words steadily lost the crisp edge of hope.

Using the telephone next to her bed, Shaw made endless calls. She was starting her own agency, she announced. She wasn’t going to waste precious time with any more big organizations or lawyers.

At times, her words were high-pitched with resentment. She talked of throwing everyone, all the helpers, out of her life. She bitterly complained of being cooped up in her apartment.

Dr. Bisher Akil had warned Shaw of dementia. He came to her hospital room and recited the symptoms: disorientation, memory loss, speech slurring, the pain in her legs. In Shaw’s case, the AIDS precursor, HIV, is causing her mental imbalance.

“You mean I’m losing my mind,” Shaw asked, appalled.

“No, no. It isn’t necessarily permanent,” Akil said, soothingly.

Her doctor says Shaw’s behavior exhibits classic manifestations of AIDS dementia; confusion, frustration and lashing out are common, and depression can trigger, or enhance, the dormant symptoms.

Dementia’s side effects can last a day, a week or longer. But with proper nutrition, enough oxygen and rest, the patient can bounce back, says Dr. Steven Miles, a AIDS specialist at UCLA.

Still, Akil warns, brain functions like memory and cognitive powers probably won’t be fully recovered. Each bout with dementia whittles away the patient’s reason.

As AIDS moves toward its terminal stages, about 30% to 50% of all victims experience some dementia, Miles says.

And as the virus reaches deeper into the heterosexual community, now there are children to witness the devastation.

“With children around, you’ve got all sorts of problems,” Miles says of the dementia. “A patient may not even be aware of what’s happening to them--they can become incredibly frustrated and depressed. Having responsibility to a child would be extremely difficult.”

Hearing of Shaw’s situation, Kathleen Brennan, president of Specialized Home Nursing, donated a personal assistant to stay with her for eight hours a day, Monday through Friday. The presence of another adult in the house certainly helped from 7 a.m. to 3 p.m.

But late afternoons were still a trial.

*

It had all become too much for her the night Shaw called me about her hurt arm. Noting the edge of hysteria in her voice, I asked about the children.

“Chassidy’s here,” Shaw assured me. “Destini, I threw out of the house.”

My blood froze. Torn between concern for Shaw and the vision of a 7-year-old wandering city streets at nightfall, I raced to my car and Hancock Park.

To cruise the riot-burned streets--stopping pedestrians, asking, asking--is to step over a journalist’s line of non-involvement that I respect. Three months ago, I couldn’t imagine doing this. But I also couldn’t imagine watching helplessly as a vibrant 25-year-old woman sank into forgetfulness and, sometimes, bitter despair.

Shaw later said she had become angry with Destini that evening and “flashed.” She flashed on fatigue, on not having next year, on the fruitless search for an adoptive family, a few dashed dreams and no man to love her. So she reached for the belt and whipped her daughter before locking her out of the house.

Destini ran to the manager’s apartment and called family friends, who picked her up. Two other friends arrived to take Shaw to the hospital.

Two-year-old Chassidy slept through all of it in her mother’s bed.

Again, professional ethics surfaced: If you take action, become part of the story, you lose some objectivity.

But a toddler, warm in the blanket of sleep, knows nothing of such things.

I bundled Chassidy and took her home.

As Shaw was led, feverish and weak, to a waiting car, she kept wailing: “Don’t let them take my babies. . . . “

*

Shaw went to Queen of Angels Hospital, but was released at 4 a.m. after emergency room workers took blood tests and gave her painkillers for her bruised arm.

The following day, she went to the AHF Clinic at the same hospital, where Dr. Akil told her to get at least three days rest. Over Memorial Day weekend, Hallis and Ellwood kept Destini and Chassidy, and agonized about what to do.

Considering the circumstances, the women knew they couldn’t just return the children to Shaw without notifying authorities. But if they called the county’s Child Protective Services, would the girls be taken away, shuttled into foster care with strangers?

During the long weekend, Shaw considered life without her daughters; she didn’t like what she saw: “I know I’m getting sicker every day, but if you take my kids away, what kind of reason do I have to keep fighting?”

On May 25, Hallis and Ellwood called Shaw’s counselor at the Minority AIDS program, who notified Child Protective Services. The girls went home to Shaw after Specialized Home Nursing donated another personal assistant for the evening hours.

Shaw now says this in-home assistance must be provided to every AIDS parent. It has become a facet of the agency she still wants to create.

David Kestler says he believes the Center for Living is still in negotiations with Shaw. But two weeks ago she had a separate phone line installed in her apartment, determined to make Tanya’s Children a reality.

So far, it’s one beige telephone in the middle of her living room floor. And more often than not, it is silent. Gone are the dozens of offers of help that flooded in two months ago; most people only called once.

If Tanya’s Children, in Shaw’s original vision, had been in existence, she and her daughters would have family counseling now. There would be someone for Destini to talk with. And maybe someone would have seen that Shaw needed help in the home before she sounded the alarm with a belt on her daughter.

If adoptive parents had been found earlier, they could have taken the girls when Shaw felt overloaded or too sick. Shaw sees the adoptive parents as a kind of human bridge to guide children from a parent’s death into a new home.

There is a simple elegance to the idea, Monte Hallis says: Create a support agency to put families together to help each other.

After Destini and Chassidy returned home, a woman from Child Protective Services interviewed Shaw and the girls and decided they could stay together.

But Specialized Home Nursing can no longer afford to donate a personal assistant, so Shaw is mostly alone again. She takes several naps a day. Destini misses school when her mother oversleeps or can’t walk the four blocks with her to the bus stop.

Ten days ago, another family--a lesbian couple with two young boys--began looking into adopting the girls. The women, both white, still don’t know whether they can afford two more children or how the girls might get along with their boys.

Destini and Chassidy met the new family last Sunday, but this time were not told they were potential parents and brothers.

“I don’t want them to have to go through all of that again,” Shaw says. “I don’t know if we can take another disappointment.”

On the same day this prospective family arrived on the scene, Jane Pauley and a crew from NBC’s “Dateline” came to Los Angeles to film a segment about Shaw.

For at least two hours, Shaw was lively and talkative; she convinced Pauley to drive to South Central, where they ordered barbecue from a take-out joint and Shaw introduced everyone to her celebrity friend. Pauley even signed autographs: “Tanya’s friend, Jane Pauley.”

During the trip, Shaw pointed out a storefront, telling Pauley she planned to return there the next day to pick out her casket.

On returning to the apartment, Shaw became ill and exhausted, leaving Pauley and the film crew with Shaw’s daughters while she crept into bed.

At first, Destini was intimidated by the film crew’s lights in her bedroom; she worried that kids in school would see her on television and tease.

Ten minutes into the interview, though, Destini and Pauley were crying in each other’s arms.

“I made some remark about how she was a very special girl; how we came all the way from New York to see her. And I said her mommy was very special, too,” Pauley remembers. “That’s when she started to cry a little, and suddenly I was crying too.

“Destini is just a little girl who needed a mommy right then and I was the only mommy available.”