New hope in Alzheimer's fight

By Beverly Creamer
Advertiser Staff Writer

Jody Mishan gets chicken skin knowing her father flew secret missions off the coast of North Africa during World War II. For his valor, he was awarded the Distinguished Flying Cross, and, to his daughter, the handsome wartime pilot was a hero.

Jody Mishan strokes her father John Mishan’s head while he looks at photographs of himself as a war hero. While he doesn’t seem to remember those times, he enjoys the conversation. Jody said it helps keep her father from slipping deeper into the disease. Cory Lum • The Honolulu Advertiser

John Mishan, 85, was diagnosed with the debilitating form of dementia a little more than two years ago and in that time has slipped more and more deeply into a confusing and lonely world.

Sometimes he'll anxiously wander the house at night, putting on layer after layer of clothing, not knowing why or remembering he has done so. During a brief stay in a Mainland nursing home, he was found hiding in a bathroom, gripped by some unknown terror.

"You never would dream this could happen in your family," said Mishan, 51, who now cares for her father as he once did for her, taking him to the toilet because he can't always find it on his own, tucking him into bed at night and telling him she loves him, as if he were a little child.

"Daddy is trying his best," said Mishan, public awareness coordinator for Kokua Mau, a coalition to improve end-of-life care in Hawai'i. "Every ounce of him is trying. Every day is a struggle for him trying to do the little things he's capable of, and I find myself saying, 'Good for you Daddy, good for you.'"

For families who live with the stresses and demands of caring for a loved one with Alzheimer's, this is a time of despairing reality mingled with great hope.

The hope comes from new strides that have been made toward developing a vaccine, from increased understanding of the role genes play in Alzheimer's and from the recent identification of an enzyme in the brain called BACE1, the culprit that snips proteins apart allowing them to form the amyloid plaques that clog the brain. The plaques bring on memory loss, behavior and personality changes, and a decline in the ability to think and reason clearly.

Jody Mishan dances with her father, John Mishan, at their home. Cory Lum • The Honolulu Advertiser

In the past two decades, a cascade of discoveries has convinced scientists that Alzheimer's is a disease distinct from aging and that it can be slowed by certain medications and perhaps someday stopped, said Danny Chun, spokesman for the National Alzheimer's Association in Chicago.

Although scientists don't yet know what triggers the disease, they have identified genes associated with Alzheimer's, as well as certain risk factors and some protective strategies (see accompanying story on risk factors and preventive measures).

Scientists also understand there are ways to attack the unnatural deposit in the brain of the broken bits of protein called amyloid. While amyloid is a necessary substance, manufactured by the body for use in building cell walls, when it's cut inappropriately, it crosses the blood-brain barrier and deposits itself in brain tissue to become a toxic killer.

Autopsies of the brains of patients who died with Alzheimer's show tissue riddled with the sticky amyloid plaques and clumps of tangled fibers that prevent brain cells from communicating, thereby killing them off.

"The most hopeful thing is we now understand a great deal of what happens in the brain," said Alzheimer's specialist Dr. Patricia Blanchette, professor and director of the geriatric medicine program at the John A. Burns School of Medicine, and a member of the board of directors of the National Alzheimer's Association.

John Mishan receives the Distinguished Flying Cross for his service in World War II in this photograph from his wartime album.

While the National Institutes of Health and the National Institute of Aging are spending $515 million on Alzheimer's Research this year, and Congress is likely to increase that sum to $700 million, Chun said more money is needed — as much as $1 billion a year.

"The biggest generation ever — 76 million baby boomers — will begin turning 65 in 10 years. Some of these baby boomers probably have Alzheimer's in their brains right now. And as you get older the odds increase," Chun said.

Testing vaccines

The potential vaccine is probably the most electrifying good news. Developed by Elan Pharmaceuticals of San Francisco, it has been able to destroy the amyloid plaques and tangles in the brains of mice afflicted with the disease, as well as prevent its onset in mice genetically engineered to develop Alzheimer's.

Joyce “Lani” Kaaihue, left, assists her father, Edwin Kaaihue, as her mother, Winifred Kaaihue, secures a safety harness on him at SECOH, an adult day care center formerly called the Special Education Center of Hawai‘i. Cory Lum • The Honolulu Advertiser

"Until we know it works, we don't know if it's going to be the most hopeful thing or not," Chun said. "There are 30 different approaches, 30 different areas scientists are looking at closely. Any one could be the answer or it could be a combination." (See accompanying story on research developments.)

It's estimated Alzheimer's afflicts four million Americans, including about 19,700 in Hawai'i, with an estimated annual cost of $100 billion for their care. Without a prevention or a cure, by the year 2050, Alzheimer's could afflict 14 million baby boomers, with care costing about $375 billion annually.

There are two major types of the disease: familial Alzheimer's, which follows an inheritance pattern, and sporadic Alzheimer's, which has no obvious inheritance pattern.

Five to 10 percent of cases are termed early-onset Alzheimer's, beginning before age 65. The remaining cases begin after age 65, with the course of the disease running eight to 20 years.

But Alzheimer's may actually begin decades before symptoms become apparent. A recently published study on a community of aging Roman Catholic nuns shows that the complexity of an individual's youthful literary work could be predictive of whether or not that person develops Alzheimer's later in life.

Edwin Kaaihue is seen here as a young man in this photo from his family’s collection.

Despite the tremendous scientific advances, the day-to-day reality of Alzheimer's disease for a family still means dealing with issues of safety, incontinence, personality changes, wandering and how to pay the enormous costs of care — as much as $6,000 a month for a nursing home.

Forgetting simple things

Winifred Kaaihue has had to watch the relentless deterioration of her husband, Edwin, 76, a retired prison guard, over the past seven years. From an active and caring partner who has kept so busy that he took a second job after retirement, he has slipped into someone who no longer understands how to speak, what it means to eat and where to urinate.

"I used to ask him to go to the market and pick me up a package of mixed salad," she remembers. "Before that, he'd just go, but by 1994, I had to draw a picture and write down what it said on the package. Then he'd come home with something else."

John Mishan rearranges a box of tissue at his home. Such a repetitive gesture is typical of someone suffering from Alzheimer’s disease. Cory Lum • The Honolulu Advertiser

His only daughter, Joyce "Lani" Kaaihue, 50, gave up her job as a Bank of Hawai'i vice president and now drives from Manoa to her mother's home in Moanalua by 6:30 every morning to help dress her father. Someone must guide his hand to his mouth, because he can no longer figure out what to do with food.

But with childish playfulness, he delights in mock "swordfights" with his wife. "She glues empty cardboard paper towel rolls together," Lani said, "and turns them into 'swords' and gives one to him and they laugh and laugh.

"He can't speak, so we understand," she continues, "but every once in awhile, something will come out crystal clear. The other night, he looked at Mom and said, 'You look nifty.' Those moments make it worthwhile. But sometimes his spirit isn't there, and that can be very frustrating. It's like looking at a wall."

On average, about 10 percent of those over 65 develop Alzheimer's, with the number rising exponentially with age. Among those 65 to 74, 13 percent have the disease; from ages 75-84, 19 percent have it. From age 85 on, about 47 percent of people have the disease.

But the early signs and symptoms can begin years before a diagnosis, and are often missed by families who tend to think that memory lapses are just a fact of growing old.

"Looking back and talking with my mom, Dad was showing symptoms several years before he was diagnosed in December of 1997," remembers Joyce Kaaihue. "He used to go to Las Vegas, and one time he got lost coming back from the bathroom. Another time, he looked right at my mother and, just for a moment, didn't recognize her. But you rationalize: 'Oh he's just having a bad day.'"

Jody Mishan remembers her father's 1998 Christmas visit from Florida, where he had moved; it was obvious, even then, that something was wrong.

Writing checks had begun to puzzle him, and when he and his daughter shopped together, he would trail behind her instead of walking alongside.

I said one night over dinner, 'Daddy, you can't be alone anymore,' and, very out of character, tears welled up in his eyes and he said 'You know, I think you're right.'"

But it was a nightmare getting him back to Hawai'i, selling the Florida house and going through a legal tussle with her sister for power of attorney to keep him out of a nursing home where he wasn't being well cared for.

"We take him to beautiful places," she said. "I think it matters."

'Love carries you through'

There's still hope that in the next few years a vaccine will be available in time to help Mishan. His daughter knows it's a long shot. Meanwhile, she has come to realize that the very best she can provide is loving, stress-free, end-of-life care, one day at a time.

It means paying for a home health aide so she can still work, and papering the house with signs to help her father manage more successfully in the times he walks on his own. It also means constant vigilance so he doesn't fall, wander away or become overly confused or agitated.

"The love just carries you through," says the soft-spoken Mishan. "Think of the person you love the most. Would you let them go through this alone?"

But respite is crucial, too. Mishan can rely on her home health aide. Respite for the Kaaihues comes during the four days a week Edwin attends a senior day care program.

Even though John Mishan's conversation has slipped into the nonsensical for much of the time, Mishan is convinced a head massager called a "tingler" is making him more alert. (It is available through a Web site, everythingforlove.com, for $25.)

And she agrees with the theory that continuing to talk to and validate what a patient says may help keep him or her from slipping further. Though her father often asks her to marry him and she has to tell him again and again that she is his daughter, she says it with a gentle calmness, without upset.

"Love works," she says. The calm of her voice inspires calm in him too, Mishan said, and helps counteract the times when he's overcome with anxiety and paces in the night, pulling on shirt after shirt as he tries to dress.

A few times, he has made his way outside and ended up several blocks away, once flagging down cars. A card in his wallet carries her phone number. The "Safe Return" bracelet that some patients wear also is crucial. But her father won't wear his, so she has tucked it into his wallet.

Humor often carries the care-giving family members through. A poetry workshop has even grown out of a local support group.

"There's a lot of funny poetry circulating around about cleaning up waste," Mishan said. "That's the toughest part, when they become incontinent. It's sort of the straw that breaks the camel's back, because everything changes.

"And it's a common scenario. They'll 'go' right on the floor and step in it and trail it all over the place. They have no concept they're doing that. They simply cannot help it. They just lose that part of their brain that says this is inappropriate. You lose the person you knew, but the spirit is still there."

"How long a journey will this be ..." reads a line of her poetry.

"Before you slip away from me

Forever...."

Beverly Creamer can be e-mailed at bcreamer@honoluluadvertiser.com or phoned at 525-8013.