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COUNTY REPORT: Confronting the Age Crisis : Spouse Puts His Soul Into Caring for Wife With Alzheimer's : Family: All the tenderness in the world could not rekindle the mental acuity of the woman he had married, so Peter Burnes took a doctor's advice and placed her in a nursing home.

December 17, 1995|MACK REED | TIMES STAFF WRITER

No trace of emotion troubles Ferne Burnes' seamed, old face as husband Peter Burnes strokes her cheek.

"Come on, come on, honey, can you give me a smile?" he pleads, giving her hand a squeeze.

Ferne says nothing, her mouth slack, her blue-eyed gaze fixed in space.

The 87-year-old man tenderly holds his 88-year-old wife's hand and talks of her in the third person as if she is not there.

She truly isn't, he says. She has Alzheimer's disease. "There's nothing left," Peter wearily tells a visitor. "If I have a prayer for her, it's just that she has the peace of God. There's nothing else you can ask for."

And as Peter talks, his wife of 57 years--a once-athletic golfer and vivacious mother of their two kids--nods to sleep in her wheelchair in the noontime sun, slumped a little to the side.

Incurable, fatal and still mysterious, Alzheimer's strikes 4 million people in the United States and kills 100,000 people nationwide each year.

In Ventura County, an estimated 15,000 people are suffering from the degenerative brain disease. It will scramble their reason, devour their memory and eventually eat away their ability to function at all.

Elder-care workers in Ventura County say that Alzheimer's disease is one of the greatest drains on an already strained system. As the county's aged population grows in coming years, many more will contract it and eventually die.

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Equally tragic is the toll Alzheimer's takes on the care givers, the husbands and wives whose increasingly helpless spouses tax their patience, their energy, their bank accounts, even their lives.

"There is a great deal of fear with dementia-related diseases, and also a lot of embarrassment," said James Wortman, head of the Alzheimer's Disease and Related Disorders Assn. of Ventura County, which offers counseling, support and medical information on the disease.

"The two biggest things society seems to value most, unfortunately, are physical beauty and mental acuity," he said. "And when one of them starts slipping, people get withdrawn. If there's a need, they refuse to ask for help. Denial is one of the biggest things we face here."

Peter Burnes remembers how it began.

Retired to Santa Paula, he and his wife used to take long walks. She began looking for children who did not exist, and suddenly saying out of a clear blue, "Oh, have to go home now." Even when she was home.

She jumped up once, declaring, " 'I can't find Peter, where's Peter?' " he recalls. "I got ahold of her and sat her down, and she says, 'I can't find Peter.' I say, 'I'm Peter.' She says, 'Oh, you're not Peter, you're my father.' "

Then she began hiding things, wandering off, calling 911 for no reason, vacuuming in the middle of the night. Once on the golf course, she walked over to another player's cart and cleaned it out, littering the greens with clubs and balls and gear.

And Ferne seemed to have no inkling, her husband says, that anything was wrong. "Things made her belligerent once in awhile, but there was never any talk about it," he said. "We didn't have a complete diagnosis."

CAT scans and doctor exams were inconclusive at first, but eventually it became clear that she had Alzheimer's. The long goodbye had begun.

Peter put up with it as best he could for three years. His friends and family were strong supports, but most of the care fell on his shoulders, and he began to suffer from what experts call "care-giver burnout."

"Those years were the hardest years of my life," he said. "You can't imagine, it just takes everything out of you. . . . That is one tough tour of duty."

He agonized about checking Ferne into a nursing home, holding off as long as possible.

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Finally, he saw one last doctor for advice: "He says, 'I can do nothing for your wife, but I'm going to keep you healthy,' " Peter Burnes recalls. "And he watched me like a hawk. He said [putting her into a home] was an intelligent thing to do."

Peter gathered his wife's clothes and enrolled her in a Ventura nursing home.

"I don't think my wife ever realized that she had left home," he recalls, a distant tone in his voice. "That was a Tuesday. They called me on the Thursday and said, 'Ferne has fallen and broken her hip.' "

After treatment by an orthopedist, the hip healed well, but Ferne could not remember how to walk. For a week or two, she refused to eat, so Peter fed her.

And eventually he had her transferred to the Twin Pines Healthcare Center in Santa Paula, where she has lived for seven years.

Peter sold their house to pay the monthly $3,400 rent on her room, but that money ran out. Now she's on public assistance and he lives with his daughter in Westlake Village.

Peter considered, then rejected the idea of sitting down with a support group for Alzheimer's care givers as a way to deal with his grief and bitterness.

"If I have a complaint, it's that the guy that runs the railroad upstairs lets her sit there, completely devoid of cognitive abilities," he says. "She's lost her essence, her vitality."

Eventually, he threw himself into work with the Alzheimer's Assn., founding a golf tournament fund-raiser that has contributed thousands of dollars to the cause for three years now.

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Last month, he went to a meeting for Alzheimer's care givers. A hundred people showed up, telling story after story of the burdens they all bear.

And it gave him strength.

"It was really an excellent thing," he says. "I sat there, and I heard these people talk, and I had gone through just about everything they were talking about."

Ferne's friends and family visit her regularly. Just last week, they celebrated her 88th birthday.

But Peter keeps his weekly visits short.

"I don't stay long because she doesn't understand," he confides, as an orderly lifts his wife back into bed. Then Peter Burnes turns his back on his wife, and gently nudges her visitors toward the exit.

"OK," he murmurs. "OK, let's go."

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