HEALTH : Alzheimer’s: A Daughter’s Nightmare

Fate has some cruel sorrows in its quiver, and the story of Rita Hayworth, who slid from sex goddess to Alzheimer’s victim inside of three decades, is one of them.

Once, she was never lovelier--that was the name of a movie she did with Fred Astaire. Once, she married an Islamic prince. Once, she slinked through the Argentine as “Gilda.” (Audiences were said to gasp at that first sultry sight of her.) Once, or this was another part of the myth, B-29 flight jockeys decoupaged her image onto the atomic bomb. But it all went away so fast, that Hayworth, the one who played light on our most erotic ‘40s movie fantasies, and what came in its wake was the thing without name or explanation.

Rita Hayworth was about 40 when she began to deteriorate in a way that told you there would never be any coming up again.

Listen to some jagged arrows in a daughter’s talk, a daughter who nursed her mother in her own Manhattan apartment until she died two years ago, haggard and vacant as a witch in a child’s nightmare. The daughter’s name is Princess Yasmin Aga Khan Jeffries, and she is nearly 40 and remarkably beautiful in several senses of that word.

“It was the outbursts. She’d fly into a rage. I can’t tell you. I thought it was alcoholism--alcoholic dementia. We all thought that. The papers picked that up, of course. You can’t imagine the relief just in getting a diagnosis. We had a name at last, Alzheimer’s! Of course, that didn’t really come until the last seven or eight years. She wasn’t diagnosed as an Alzheimer’s until 1980. There were two decades of hell before that.

“It was so many little things in the beginning. This is way back. She’d shuffle her feet. She’d fiddle with her hands. She’d get so incredibly agitated. The paranoia, her mood swings, the funny behavior. Something in her gaze. I think it’s there in ‘Separate Tables.’ I can see it. What is the date of that movie, late ‘50s? . . . .

“Maybe she’d reorganize her closets--over and over, obsessively. I kept wondering why her clothes were ending up in my closets. I was just a girl. It was almost funny. I can go back and all of it connects now. Oh, yes, and throwing the food out of the cupboards, I mean, just going through the refrigerator and the cupboards and pitching everything out. It was hysterical, except it wasn’t. . . .

“We went to the doctor--I’m jumping forward. He was going on about this and that, just chatting, then he said, sort of slid into it, ‘Well, Rita, who’s the president of the United States?’ And Mom caught it instantly. She totally changed. Switched the subject. Looked away. She got very gay, almost flirty, started laughing, being very charming and conversational and wonderful. It was like she was trying to get a part.

“It was just so horrible to watch. She had to know. She had to know her mind was being robbed. After she was dead I went through her things and found a book about losing your mind. She’d look at someone and say, ‘I know you, I know you.’ Her brain just couldn’t find it. It was as if she had mislaid her life. . . . . We had her on Haldol. Do you know Haldol?”

It seems over now, this four- or five-minute soft-voiced chronicle of pain and splintered memory coming from a hunched-forward and elegantly slim figure on a flowered sofa in a Northwest Washington home. But it isn’t over. Yasmin Aga Khan Jeffries adds this, fidgeting with her blue-veined hands, playing with her long light hair, which she keeps flipping over to one side, absent-mindedly, like a ‘40s movie siren:

“It’s such a humiliating disease--for everyone. The family feels so helpless. And we’ve been ignorant about it as a country. All I ever wanted to do was to give Rita Hayworth peace in her last years. I suppose that’s part of why I used to bring my son Andrew into her room when she was dying. . . . He was just a 1-year-old then, and he’d crawl around on her bed. I want to believe that on some level my mom knew who he was, knew someone was there.”

Statistics won’t tell the story, but here are several: Alzheimer’s disease, or AD as it is commonly being called, is a progressive, degenerative illness of the brain that is the fourth leading cause of death for American adults. Most of the time, not always, its victims are people in advanced age. Rita Hayworth died of it at 68, but she had some form of the illness in her body, in her head, for decades.

One out of every three American families is now thought to have an Alzheimer’s victim in its midst, incipient or otherwise. The illness is costing the country $88 billion annually, but just $120 million of public funds is being allocated to combat it. An American family spends an average of $25,000 a year caring for its AD victim; almost no public or private or insurance reimbursements currently exist to help. Yes, if you spend your savings down to the bone, you can qualify for Medicaid, that’s about the only way.

This is a large part of the reason Rita Hayworth’s daughter, a woman vulnerable and extremely shy in public, came to Washington last week. She came to put her pain on a public plate and say: Here it is. My story is awful, but there are even worse ones out there.

Rita Hayworth’s classy but not calm daughter is playing with a pearl earring. The earring is ringed in diamonds, and they’re not garish ones. She has on the lightest nail polish, the lightest pink lipstick impeccably applied. She has just arrived in Washington, on the Pan Am shuttle, and the reception on Capitol Hill for the Alzheimer’s Association, of which she is a board member, is only 90 minutes off. Everything is running late; everything about her seems fret and nerve.

She has a professionally trained lyric coloratura’s voice. She gave up that career to take care of her mother.

“I couldn’t do both,” she says. “Just couldn’t. I believe this whole Alzheimer’s, this whole degeneration, my mother’s struggle, was far more important than my singing career. . . . . And anyway I was curious. ‘What was this?’ It was alcoholism, but what else was it? I think some people might have cracked, and I suppose in this sense I’m very proud of myself.”

And then: “I did it because I cared for her. Because I loved her. My being, my person--it was in me. I don’t know why. I have a half-sister--she is Orson Welles’ daughter--and for whatever reasons, well, anyway, I was the one. I just couldn’t stand by. I suppose there are several routes to take.”

Did you ever think of institutionalizing her?

“Of course, think of it. Do it? Never. I mean, not even in the worst of it. I’ll tell you the worst of it. It was when she stood in the doorway, looked at the chair, shuttled her head from side to side at the entrance to my living room. She didn’t know why she had got up, she didn’t know where she was heading, she didn’t know how to walk back to her chair. She looked in the mirror and didn’t know whose picture it was. She looked at me. She said, ‘Well, who are you?’ She stood there immobilized.”

Pause. “And this was years before she died.”

And yet it wasn’t always like that. Because the terrible thing about AD sufferers is that they go in and out--from their diapered helplessness to adulthood and back to their infancy. Like spirits passing through a room, like faces cracking in the mirror.

Do you ever worry--she has anticipated it perfectly. “That I’ll get it? That I have it? Yes. Yes. I worry about it all the time. I live with it. I’m not a calm person.”

Her professional life is taken up with fund-raisers, benefits, galas, receptions, board meetings. “I don’t need the money. I have money. Maybe someday I’ll go into business.” And then: “I don’t remember the Hayworth of ‘Gilda.’ I remember the Hayworth of ‘Circus World.’

Only in the last 10 or 15 years have I been able to appreciate what she had on the screen.

My mother had this turbulent, splendid, joyous, awful life.”

Yasmin Aga Khan Jeffries’ arms have spread as wide as she can spread them.