How California Copes in Caring for the Brain Damaged : Despite Tragedy, Tireless Crusader Says Her Story of Struggle Has a Happy Ending

Anne Bashkiroff wants it made clear: Her story has a happy ending. The horror of seeing her husband slowly deteriorate, transformed into a sometimes violent, often childlike parody of himself; the frustration of not understanding what was happening, finding no one who could answer her questions with compassion, no place where her husband could receive competent, loving care; the mistakes made with her husband, her son, her own psyche--it’s all past.

And the tragedy, says Anne Bashkiroff, “has enriched my life.”

Alzheimer’s disease--put simply, it’s a process of mental degeneration. Its victims lose their ability to communicate, to remember, to reason, to care for themselves, while remaining physically strong and healthy. When Sasha Bashkiroff began showing symptoms in 1969, the disease was as foreign as space travel. Although diagnosed for the first time in 1906, there was virtually no research and no popular knowledge of its symptoms or even its existence. There were Alzheimer’s victims, but usually they were written off as drunks, psychos or pathetic family secrets.

Anne Bashkiroff knew her husband wasn’t a drunk, didn’t understand how he could suddenly become crazy, and it wasn’t her style to keep him a secret. Almost overnight, it seemed, her well-ordered life became chaotic, an unending struggle to be rational in an irrational situation. And it wouldn’t stop with Sasha Bashkiroff’s death in 1978.

Suicide Attempt

Instead, all the craziness caught up with her and, in 1980, Anne Bashkiroff attempted suicide.

Today, at 62, she strides about the small two-story house in the Richmond district of San Francisco which she and her husband bought 27 years ago, pointing out plaques and photographs, testimonies to success--and survival. She has a book to promote, “For Sasha With Love,” (Dembner Books: $16.95) written by former San Francisco Examiner staffer Gail Bernice Holland.

And she also has a gratifying awareness that had it not been for her, her struggle and her fighter’s instinct, there might never have been a Family Survival Project, a statewide health-care program for the brain-damaged.

Perspective on a Nightmare

“I’m happy,” she says simply. The suicide attempt, part of the total nightmare, she adds, was put in perspective by a doctor, also a friend, who pointed out to Bashkiroff that “we’re all at risk.”

It was her biographer, says Bashkiroff, who drew her out; who lured her to seeing past the experiences to talk about her feelings. And this day Holland has joined Bashkiroff in the plainly furnished living room, quietly sitting by, only occasionally offering a clarification, as Bashkiroff--attractive, dynamic, strong-willed--talks about all that’s happened.

As it usually is with Alzheimer’s disease, the nightmare is made more startling by the contrasts. Alexander Feodrovich Bashkiroff (but aways referred to as Sasha), was a handsome Russian aristocrat who fled his country just after the Revolution. He was living in Shanghai, managing the properties of Sir Victor Sassoon, when he met Anne Bernstam. He was 35 at the time. She was 15, a daughter of Russian Jews who had also fled Russia for Shanghai. Theirs is a romantic saga. They became lovers; she left Shanghai to immigrate to the United States with her family; he followed; they married. There were immigration problems so they moved to Buenos Aires. The problems solved, they returned to the United States in 1951 and eventually settled in San Francisco where he took a job as an engineer with the American Can Co. and she became a corporate secretary to Children’s Hospital. They both became U.S. citizens, bought a house, had a son, Nicholas Alexander, and figured they were living the American dream.

Alzheimer’s ended the dream. Anne Bashkiroff dates the beginning of the problem to 1969 when her husband, then 65 and just months away from retirement, was hospitalized for emergency kidney surgery. Nothing was the same after that, she says. His behavior was strange, erratic, childlike yet domineering. He never returned to work. As time went by, he started to call her office every few minutes asking why she wasn’t home. He was physically able to care for himself but, realistically, he couldn’t: He put orange juice in the coffeepot, hung saucepans on the clothes line and tore apart the kitchen plumbing.

No Magic Cure

“There were days so bleak. . . . And I was always looking for some magic cure. I mean, if you had a tumor, that could be excised. But with Alzheimer’s. . . ,” she shook her head. “It’s like an electric circuit that goes out, one little thing after another. And me, I was like a Chinese juggling act.”

Bashkiroff made plenty of mistakes: The book--Bashkiroff’s story written by Holland as if she were Anne Bashkiroff--is mercilessly blunt. Refusing to accept what was happening to her husband, she allowed him to drive. Indeed, she never told him of the doctor’s diagnosis. She worried too much about her husband’s appearance; always meticulous, it had grown slovenly. She didn’t involve her son, which caused their relationship to suffer.

And things only got worse. Day help refused to stay because of Sasha’s verbal abuse. During one three-month period, he was in and out of eight boarding facilities--no one was prepared for his outbursts of physical violence. There was nowhere to turn for help or even reassurance. Doctors seemed coldheartedly grim, she recalls, particularly the psychiatrist who told her, his voice tinged with annoyance, “Mrs. Bashkiroff, you must realize society is not prepared for problems such as yours.”

Even now Anne Bashkiroff gets riled just telling the story. “Who was he to say that? I was living the problem.”

Problem Becomes a Crusade

And perhaps it was from that moment, that the problem became a crusade. In the book, Gail Holland writes: “The fighter in me wouldn’t accept this to be the end. Doctors had said there was no cure for Sasha’s disease. Social workers had told me over and over again there was no facility that would take my husband, but this psychiatrist had gone so far as to tell me that society--our big, complex, caring society--wasn’t prepared to answer these problems.

“My energy roared against this negativity. Damn it, I thought, society had better be prepared to deal with us! I wasn’t sure how I was going to do it, but I knew I had to find a solution not only for Sasha, but for all families who faced my situation.”

It was Nancy Lapham, a board member at the hospital where Bashkiroff worked, who led her to Jane Ophuls, a board member of the San Francisco Mental Health Assn. By this time, Sasha Bashkiroff was near the end. And Anne Bashkiroff was angry. It was the system, she was convinced, that destroyed what was left of her husband.

Finally, however, the timing was right. The Mental Health Assn. had created a community assessment committee to study mental health services in San Francisco. Here was Anne Bashkiroff--fresh with her frustrations, sharp with her anger, demanding action.

(Diana Petty, head of the Family Survival Project in San Francisco, says people still talk about Bashkiroff’s speech at that community assessment committee meeting. “It must have really been something.”)

Need for Education

Out of that assessment meeting came agreement that both doctors and lay persons needed to be educated about the problems brain-damaged victims and their families encounter; agreement that families of brain-damaged people needed support groups.

There followed: a series of public meetings and seminars, meetings with legislators and other decision makers (including testifying before the President’s Commission on Mental Health), television and newspaper interviews and eventually, funding by the state Department of Mental Health for the Family Survival Project for Brain-Damaged Adults--first as a special pilot project and, in 1980, as an independent, tax-exempt organization. Its purpose was to offer practical information, counseling, referrals and support to families of adult victims of chronic brain disorders.

Still, Sasha Bashkiroff died. For all Anne Bashkiroff’s struggles, frustrations, personal tragedies, there is no answer. That would hardly seem a happy ending.

‘Families Can Be Helped’

Anne Bashkiroff shook her head. That’s the wrong way to look at it. “True, there’s no answer to those who have Alzheimer’s. The answer is that families can be helped. For 7 1/2 of the nine years he was sick, if the Family Survival Project had existed, Sasha could have stayed at home.”

She sighed. So much of what happened reflected her entire set of values, her history. “You have to understand, in China, we were accustomed to Americans coming to save us. Whenever there was a natural disaster, famine, the attitude was don’t worry, the Americans will be there. And when all this was happening to me, I just knew that Americans only had to be told and things would be made right.

“And, sure enough, as soon as I started speaking out, people listened. It was incredible. There wasn’t anybody I couldn’t talk to, who wouldn’t respond,” she said, smiling at the memory.

“And maybe what’s so heady about what I see today is knowing that I was right--right to have faith in the system.”