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Thursday, July 24, 2008

What You Need to Know About Alzheimer’s
by Diane Guernsey

Edited by Janet Carlson

With November being National Alzheimer’s Disease Awareness Month, the time is right to spread the word about better treatments on the horizon and strategies for caring for an afflicted loved one.

WARDELLA “WARD” Carter Smith’s first, unknowing step into Alzheimer’s disease was an MRI on her seventieth birthday. For months Ward’s daughter Suzanne Liberty (a management consultant in New York City) and Liberty’s two sisters had been urging their father, Hubert Smith, to take Ward for testing. “She’d start to make coffee and forget to put water in the pot, or begin a roast beef, and three days later, it was still in the oven,” says Liberty. The MRI ruled out a brain tumor and led to a tentative diagnosis based, like every such diagnosis, not primarily on quantitative tests but on mental-status assessments performed by a doctor. The verdict: Alzheimer’s.

“My mother started sleeping a lot and forgetting to eat. By age seventy-five she’d lost fifty pounds, and by seventy-seven she was dependent on others for bathing and meals,” Liberty says. Hubert struggled with his wife’s care; then, tragically, he was killed in an accident. Liberty’s sister Becca Doyle quit her teaching job and moved with her husband, Jim, into Ward’s house, north of Little Rock, Arkansas.

Ward’s cognitive and behavioral deterioration continued. “She might pick up food off her plate and throw it at you or take a spoonful and shove it into her pocket,” Liberty recalls. “We’d ask, ‘What will you do with that?’ She’d say, ‘Do with what?’ ” The drug Aricept eliminated this behavior and helped Ward stay more lucid, but the primary-care doctor and the neurologist overseeing her care (the usual Alzheimer’s protocol) could offer little else to stop her slide into dementia.

In 1998, when Ward was seventy-eight, Liberty and her husband, Bennett, a leather-accessories designer, moved her into their Manhattan apartment and hired a home health aide for weekdays. “This completely changed our world,” says Liberty. “It was like having a new baby, being up three or four times a night. I became sleep deprived. We worried constantly about her falling and breaking a hip.” Ward began to complain about being homeless and asked endlessly, “Where’s Hubert? Did he die?” After eleven months, Liberty says, “I hit a wall.” She moved her mother into a private room in a high-quality assisted-living residence in Brooklyn, where she settled in well. The arrangements, including round-the-clock aides, cost $185,000 a year, none of it covered by insurance. Ward’s contentment, however, made the expense worthwhile. Four years later, in 2003, Ward died after suffering from pneumonia and a daylong series of grand mal seizures.

This story, with its mingling of sadness and heroism, points up the special horrors of this neurodegenerative disease. “With some illnesses you can still live and love with your mind intact; with Alzheimer’s you lose abstract thought, reasoning and judgment,” says Howard Fillit, M.D., executive director of the Alzheimer’s Drug Discovery Foundation (ADDF) and the Institute for the Study of Aging (ISOA). (The Web site for both New York City–based organizations is www.aging-institute.org.) “People fear this more than cancer or heart disease.” Alzheimer’s embodies “all the worst specters of old age,” says Robert Butler, M.D., president and CEO of the International Longevity Center, in New York City (ilcusa.org). He notes that the disease’s prevalence makes it all the more terrifying: Alzheimer’s represents perhaps 60 to 80 percent of all dementias , followed by dementia due to vascular disease. One out of eight people aged sixty-five and older has Alzheimer’s, but that figure rises to nearly one in two over age eighty-five. (Rare, inherited forms of Alzheimer’s can strike as early as age thirty.) “Some five million people in the U.S. now have Alzheimer’s,” says Butler, “and with the baby boomers marching into old age, there’s the prospect of many millions more”—an estimated sixteen million by 2050.

Once diagnosed, those with Alzheimer’s live another eight to ten years, on average, before succumbing to infection, malnutrition or pneumonia or to the disease’s destruction of the brain’s respiratory controls and other vital functions. But some survive far longer. “One man’s wife cared for him for more than twenty years, and my mother hung in there even longer,” notes Princess Yasmin Aga Khan, the Alzheimer’s Association’s honorary vice chair and the daughter of film legend Rita Hayworth, who developed the disease in her fifties.

This lengthy ordeal adds another hammer blow: the astronomical cost. “Our society loses well over $100 billion each year to Alzheimer’s,” Butler says. Finally, though, some good news is brightening the picture. First, after years of only modestly beneficial drugs, promising new treatments are in the pipeline. Second, researchers are learning more about how to delay Alzheimer’s—and maybe, ultimately, how to prevent it.

Hope on the horizon The new medications stem from twentyfive years of research into Alzheimer’s nature and causes, says William Thies, Ph.D., vice president of medical and scientific relations at the Alzheimer’s Association (alz.org), the world’s largest private funder of Alzheimer’s research. “Now many therapeutic compounds have emerged and are in clinical trials.”

At least nine drugs have entered Phase III trials, which is the final step before manufacturers seek approval from the Food and Drug Administration. If approved, some could come on the market as soon as three years from now. Among the most promising of these drugs are the beta secretase inhibitors; they target the protein beta-amyloid, which creates plaques that kill brain cells and which is a prime suspect in Alzheimer’s. The new drugs, taken in pill form, either keep beta-amyloid from forming or bind to it and prevent it from creating plaques.

Unlike the Alzheimer’s medications currently on the market (Aricept, Razadyne, Exelon and Namenda), which primarily target symptoms, many of the drugs in development are called disease modifiers because they aim to slow or interrupt the disease process.

“If these new drugs are safe and effective and get approved, that could change the world,” says Fillit. “The field has started testing whether these new drugs reduce the rate of Alzheimer’s progression, but eight or ten years from now, I can imagine that they’d be used to prevent the disease.”

Vaccines called monoclonal antibodies, now in Phase I and II trials, also show potential, Fillit says. “These bind with beta-amyloid and remove it.” If effective, the vaccines could be approved within five years.

Scientists are also examining the potential of existing drugs to treat Alzheimer’s. The antidepressant Rolipram, for instance, inhibits an enzyme that degrades an important memory molecule; however, it causes nausea in its current pill form. So Huntington Potter, Ph.D., founding executive director of the Byrd Alzheimer’s Institute, in Tampa (byrdinstitute.org), is testing a Rolipram patch.

Recent breakthroughs in brain imaging offer promise too. “We now have molecules that, when injected at low doses, bind to beta-amyloid and can be radiolabeled so that they light up on a PET scan,” Fillit explains. “Using these scans, we can see whether someone is depositing beta-amyloid in the brain or check how well a medication is working.”

Because Alzheimer’s research funding is surprisingly scanty, many of these advances would never have emerged without the initial “venture philanthropy” of the ISOA and, later, the ADDF, which together have donated nearly $29 million to academic and biotech scientists since 1999. “There’s many years’ gap between making a basic research finding and bringing a drug to market, and that’s where we have stepped in,” says Estée Lauder Companies chairman Leonard Lauder, who, with his brother, Ronald Lauder, founded the ISOA and the ADDF. “We’ve taken some great, creative scientists’ very early-stage ideas and helped bring them closer to market. Once they’re ready for Phase II or III testing, they don’t need us anymore.” The return on these humanitarian investments is potentially limitless.

“Imagine a day when someone turns sixty-five and gets a PET scan. If it’s positive, he or she goes on a beta secretase inhibitor or a vaccine and never gets Alzheimer’s at all,” says Fillit. “That is a very, very possible scenario that’s perhaps only five to ten years away. There’s a lot of hope.” For more on clinical trials, visit www.alzheimers.org/trials/index.html.

Keeping your wits about you Never getting Alzheimer’s at all—the thought is too delightful for words. But even postponing the age of onset would work wonders, say experts, by offering people a fighting chance to live lucidly until death occurs from other causes—or until effective treatments (or a cure) arrive. “Simply delaying the appearance of Alzheimer’s symptoms in individuals for five years,” says the Alzheimer’s Association’s Thies, “means we can cut its actual prevalence in half.”

For many, postponing Alzheimer’s may be achieved through simple lifestyle choices. There’s growing scientific evidence that heart-disease risk factors—including hypertension, obesity, diabetes and high homocysteine and cholesterol levels—also raise one’s chances of contracting Alzheimer’s. Therefore, says Butler, “it’s very important to treat high blood pressure or diabetes, not just for their own sake but because they have a negative impact on the circulation generally, and there’s a strong connection between poor blood circulation in the brain and Alzheimer’s.”

As for lifestyle, doctors recommend. . . the Same Old Thing: eating wisely and exercising regularly. But they’re tweaking their advice as new data come in. Eating wisely means following a heart- and brain-healthy nutritional plan, such as the Mediterranean diet, which is high in vegetables, fruits, whole grains, olive oil and fish, and low in meats and high-fat dairy. Studies suggest that resveratrol in grapes (in red wine and grape-seed extract), omega-3 fatty acids (in fish and fish oil) and flavonoids (in tea, chocolate, fruits and vegetables) help slow mental decline.

Exercise, though, is the ultimate elixir. Vigorous aerobic exertion (at least thirty minutes per day of brisk walking, jogging or biking) may spur new neurons to grow and existing neurons to forge connections. And an active lifestyle strongly correlates with a youthful mind: a landmark 2003 study found that seniors who engaged in stimulating leisure activities like board games or ballroom dancing or who played musical instruments were 63 percent less likely to get Alzheimer’s. The key is challenging the brain, particularly by learning new tasks and skills. There are computer programs and video games designed for this purpose. In contrast, a well-regarded study found that subjects who engaged in a lot of passive activities, like watching television, during early and middle adulthood had about a 250 percent greater risk of developing Alzheimer’s.

Choosing a Facility

The often overwhelming difficulty of finding the right longterm care for your loved one is about to get easier. This month the Alzheimer’s Association’s Web site (alz.org) launches its free, no-advertising Senior Housing Finder, a searchable compendium of every licensed long-term-care facility in the country—some 65,000. Visitors to the site can search by location, levels of care available, waiting-list status, type of living space, meal options and languages spoken, as well as see pictures, read about a center’s amenities and get contact information. The association hopes to eventually offer in-depth Alzheimer’s-specific information for all facilities, including the stages of the disease each center is equipped for.

When checking out a center, use your eyes and nose, says Matthew Anderson, administrator of the skilled-nursing facility at the Osborn, a continuing-care retirement community in Rye, New York (914-925-8200; theosborn.org). “Visit the facility unannounced, and observe staff-resident interactions,” he suggests. “Are staff members talking to patients, saying hello? Is the atmosphere akin to a family setting?” He also recommends asking how much risk the facility is willing to share: “A lot of facilities will become so scared that a patient will fall and fracture a hip, for example, that they will never leave him alone. Residents need to be able to make some choices, to have dignity and some level of independence.” Other top Alzheimer’s-care facilities across the country include Copper Ridge, in Sykesville, Maryland (800-531-6539; copperridge.org), and Charter House, in Rochester, Minnesota (800-533-1562; charterhouse-mayo.org). For more help finding a center, Anderson recommends contacting the American Association of Homes and Services for the Aging (202-783-2242; aahsa.org).
LORIE A. PARCH

Ready or not. . . the coming funding crunch If startling numbers of individuals stand to gain by the prevention or postponement of Alzheimer’s, so do families, businesses and governments at all levels. Seven of ten Alzheimer’s sufferers live at home, with family and friends providing 80 percent of their care informally—to the tune of $83 billion a year. The illness costs businesses $36 billion annually.

“The government spends about $643 million annually on Alzheimer’s, and we predict that by 2030 it will be nearly $400 billion—about the size of the entire Medicare budget today,” says Gerald Sampson, chairman of the Alzheimer’s Association’s development committee. (Medicare doesn’t cover many aspects of care; see “The High Cost of Alzheimer’s,” page 228.) “We already know what pressure our health-care system is under. Alzheimer’s will bankrupt it.”

Yet nearly everyone agrees that Alzheimer’s is underfocused and underfunded, says Emmy- and Tony-winning actor David Hyde Pierce, who became an Alzheimer’s spokesman after losing his father and grandfather to the disease. “When we go to D.C., the legislators say, ‘This is terrible; we have to do more.’ But there have been many attempts to cut funding.” Pierce is helping spearhead the Alzheimer’s Association’s Champions awareness campaign (actionalz.org). “We want to recruit five million people to join us—participate in Memory Walks, buy a T-shirt, call their congresspersons. If we do nothing, this disease will be part of every one of our lives.”

Caregivers’ burden Many relatives and friends of those with Alzheimer’s must watch a loved one’s personality change or fade away. “For the last four years of my father’s life,” says Santa Monica entrepreneur Dan Michel, “there was a guy who looked like him and sounded like him, but it wasn’t him—my father was gone.” Other caregivers witness sudden bouts of paranoia or rage. Phyllis George, a former Miss America and noted sportscaster, recalls: “When my mother developed Alzheimer’s, we had to take away her car keys. This elegant, well-dressed woman walked across the room and kicked me in the leg. But that was not my mother; that was the disease. “The person’s mind is like a lightbulb flickering on and off. When it comes on, you’d better be there to savor the moment.”

Michel, who developed [m]Power, a computer-based brain-fitness system with cognitive exercises, during his father’s illness, says, “My father didn’t know who I was, but he’d smile when he saw me. With Alzheimer’s, you take what you can get, and you need to be grateful.” He also notes, “I’ve come to understand that his disease was my dad’s final gift to me: it opened up an opportunity for me to help people. Ultimately, I know it was a blessing.”

The greatest blessing will be the day when we finally prevail over Alzheimer’s, says Potter of the Byrd Alzheimer’s Institute. “I have hope that someday soon we’ll be able to if not cure the disease, slow it down so that we can all look forward to a ripe old age instead of a rotten old age.”

# # #

The High Cost of Alzheimer’s

Nationwide, the average cost of one year of nursing-home care is nearly $75,000, according to a survey by insurance giant Genworth Financial. One year of care in an assisted-living facility averages $32,573; home care provided by a full-time, certified and licensed health aide runs $52,977 per year. The actual figures depend on the location. In New York City, for instance, nursing-home care runs $135,853 per year , and a twenty-four-hour agency-employed home health aide can cost as much as $175,200. Long-term care for those with Alzheimer’s is not covered by Medicare or other medical plans. Medicaid covers long-term care only for financially destitute people. So it’s vital to plan how you’ll pay for care—whether through personal assets, loans, employer-provided disability or long-term-care plans, or private insurance.

If you choose to buy insurance, do so while you’re still healthy enough to qualify, since once Alzheimer’s symptoms have emerged, it’s too late. Make sure the policy guarantees coverage for Alzheimer’s, so that it cannot be revoked if you develop the disease.

Consider the following questions, advises Genworth’s president of long-term-care insurance, Buck Stinson. (1) How many years’ coverage do you need? Policies extend anywhere from two years to a lifetime. For most people a five-year policy is sufficient, says Stinson. “Statistically, once the policy’s benefits are triggered, 95 percent of people die before the five-year mark.” (2) What level of daily benefits do you want? These cost $150 to $400, depending on your location and the type of facility you choose. Determine the daily-benefit cost in your retirement locale, says Stinson; then round up to the next fifty dollars. (3) How much inflation should you plan for? For people aged seventy-five and up, a policy that raises benefits by 3 to 5 percent a year will suffice; for younger people, compounded interest (averaging a 5 to 7 percent annual increase) is preferable. For a couple, aged sixty, a five-year policy with $400 in daily benefits would run $4,982 apiece.

Depending on which state you live in, you may be able to get a policy that’s usable as life insurance if you don’t need long-term care, or insurance that can be annuitized without being taxable.
D.G.

A Caregiver’s Primer
Alzheimer’s takes an especially heavy toll on those who care for its sufferers. Here’s how to avoid burnout.

By Lorie A. Parch

HOUGH PEG HALL suspected for years that her husband, Buford, had Alzheimer’s (his mother died of the disease), it wasn’t until he was diagnosed in 2001, at age seventy-nine, that the full impact of the situation hit her. “His not being there, that’s the hardest thing,” says the Chapel Hill, North Carolina, wife and mother. “I don’t have a companion; I have only a physical presence living with me. At times I feel guilty because my feelings for him have changed now that my role is strictly that of a caregiver, but how do you cope with this? I find sadness in the loss of an exciting mind. It’s a long, drawn-out tragedy.”

Michael Schwartz’s (not his real name) life has been turned upside down by Alzheimer’s: both his parents, who are in their eighties, have the disease. They moved from their Westchester, New York, suburb into a nearby assisted-living facility last November. “The most difficult part of this experience is watching my parents deteriorate and seeing them in a state where I’m basically the parent instead of the child,” says Schwartz.

If nothing can prepare you for hearing that someone you love— and maybe the person you love most—has Alzheimer’s, there are a few things that can make the challenge of caregiving easier to bear.

Plan sooner “These days, people are being diagnosed earlier,” says Peter Reed, Ph.D., senior director of programs for the Alzheimer’s Association. “People in the beginning stages may still have the capacity to participate in discussions about legal and financial issues.” Don’t put off the difficult conversations or avoid putting in place the necessary paperwork (see “The Living Will,” page 230). Also crucial is a durable power of attorney for the person’s estate. See an estate-planning lawyer, advises Donna Schempp, program director of the Family Caregiver Alliance, in San Francisco (caregiver.org). “Because if you do it wrong,” she warns, “you can make your life a lot harder.”

Find support Friends, family, neighbors, coworkers —all can be helpful, but don’t forget about support groups specifically for caregivers of those with Alzheimer’s. “My group has really helped in that I can talk directly to people who have gone through it,” says Peg Hall. Find someone to whom you can vent your frustration, anger and sadness—“someone you can be brutally honest with,” suggests Lisa Gwyther, education director of the Bryan Alzheimer’s Disease Research Center at Duke University Medical Center, in Durham, North Carolina. Some caregivers get support from a geriatric-care manager (GCM), says Anna Dowd Treinkman, a certified gerontological nurse-practitioner at the Rush Alzheimer’s Disease Center, in Chicago. This certified professional can hire in-home health aides; monitor doctor’s visits, medications and overall health; and help patients and their caregivers find resources. “They can be really beneficial as the eyes and ears of long-distance caregivers,” Schempp adds. Visit the Alzheimer’s Association’s Web site, alz. org, to find a support group near you. To find a GCM, contact the National Association of Professional Geriatric Care Managers at 520-881-8008; caremanager.org.

Manage expectations A huge challenge is dealing with dramatic and often sudden changes in behavior, from angry outbursts and inappropriate sexual conduct to deficient hygiene and heightened paranoia. “The cardinal thing is not to argue with a person with Alzheimer’s disease,” Treinkman cautions. “Get into her world. If a person believes this isn’t her house or somebody took her purse, rather than try to convince her of the facts, focus on her feelings and distract her.” Schempp agrees: “The biggest fight is often getting people to bathe. Part of it is learning not to be so fussy about how often they bathe.” Make peace with the unknown “With Alzheimer’s there are different stages, and the transition points become really challenging,” says Reed. Gwyther advises: “All you can do is set up what’s going to work for a while. I remind families that they’re living with a situation they didn’t create, their choices are going to be limited, and they’ll have to look for what works for now.” Get help when it’s time “You will ultimately reach a point where you’re overwhelmed: you can no longer ensure safety, hygienic practices and good nutrition or be certain that the person is in a socially engaging and stimulating environment,” Reed says. Avoiding caregiver burnout may mean hiring a home health aide, looking into adult day care or transitioning your family member into a setting where more medical care can be offered, perhaps on a 24/7 basis. Incontinence and chronic wandering outside the home are two reasons many family members seek professional help. “It may be that [someone says], ‘When they no longer know me, I won’t feel so guilty if I put my father, mother or spouse in a nursing home,’” adds Schempp.

When selecting a facility, Reed says, look for a place that offers what is known as person-centered care. “The experience of this illness differs from person to person. The staff should understand the individual’s remaining abilities and personal preferences and use that medical, physical and social assessment to maximize quality of life.” For help finding a long-term-care facility, see “Choosing a Facility,” on page 227.

Take care of yourself “Caregivers tend to be selfless; they often have high expectations of themselves and are not very forgiving of themselves,” says Schempp. “They’re working hard caring for someone else, and they get lost.” If you’re feeling angry, isolated, exhausted or depressed, or if you’re losing sleep, seek help. The physical and emotional cost to caregivers of Alzheimer’s patients can be much higher than to those coping with other illnesses. Notably, a MetLife Mature Market Institute study found that Alzheimer’s caregivers experienced a deterioration in their health 45 percent more often than other caregivers did.

There’s no special formula for finding more balance; it simply means taking time for the activities and the people you love. “The more successful caregivers are people who have a sense of humor, are easygoing and have some patience,” observes Treinkman. For Schwartz, a personal philosophy, as well as the support of friends, family and coworkers, has given him strength to care for his parents. “I’m a big believer that the world is round and that this is a chance for us to give back to our parents for what they gave to us as children,” he says. “It’s not what we want or they want, but the one joy is that you’re able to give back in a time of need.” For more advice on caregiving, read Always On Call: When Illness Turns Families Into Caregivers (Vanderbilt University Press; $24.95), edited by Carol Levine.

# # #

The Living Will: A Crucial Document

As if the emotional challenges of Alzheimer’s disease weren’t enough, families can end up bitterly divided in their efforts to make practical, medical and financial decisions on behalf of their afflicted loved ones. To spare your family anguish should you develop Alzheimer’s, consider drafting a living will or a healthcare power of attorney (also known as an advanced medical directive), in which you clarify your wishes for medical treatment and appoint someone to make decisions for you in the event that you become physically or mentally incapacitated. And don’t wait until signs of the disease are apparent, advises Andrew Sykes, an elder-law attorney in Pittsburgh. “A living will involves complicated concepts and what-if scenarios that may be difficult to grasp even during periods of lucidity in the early stages of the disease.”

Pay attention to formalities
Be sure you know which type of document packs the most legal punch in your state. For example, in Virginia, an advanced medical directive has broader powers than a living will. For Illinois residents, the health-care power of attorney is the best choice. “While the term living will is used generically, under some state laws living wills are limited; they may have the authority to remove a ventilator but not food and water,” says Charles D. Fox IV, an attorney at McGuireWoods, in Charlottesville, Virginia.

Some states have standard forms, which can often be found at a doctor’s office, a hospital, a religious institution or at caringinfo. org, a site created by the National Hospice and Palliative Care Organization, in Alexandria, Virginia. If your state doesn’t have a standard form, create your document with the help of an attorney, and make sure to get it notarized or otherwise made official according to your state’s requirements, Fox says.

Get specific about Alzheimer’s
Though a typical living will contains directions for care under lifethreatening situations, when Alzheimer’s is a concern you should also address questions about daily life that may surface as the disease progresses. For example, Sykes advises that you clarify if and when you believe you should enter a nursing home, when you would like someone to start making decisions on your behalf, and any wishes you have for the time after serious dementia sets in.

Be clear about circumstances in which different kinds of care would be acceptable. “Avoid blanket statements such as ‘I don’t want to be intubated,’ ” says Deirdre Wheatley-Liss, an elder-law attorney at Fein, Such, Kahn & Shepard, in Parsippany, New Jersey. “You may not want to be intubated for the long term, but if you are generally healthy and get stung by a bee and go into shock, you’ll want this procedure if that’s what it takes to save you.” Explain your wishes clearly enough so that your appointed proxy can make decisions on your behalf with confidence, Wheatley-Liss adds.

Inform your family, friends and doctors
If you become incapacitated, no one should be surprised to find out you have a living will, or what it contains. So once you’ve completed the document, give copies to whoever may be involved in your care. “They may not agree with your directives, but they will probably accept them if you explain your decisions,” Fox says. And don’t stop there. Discuss your living will with your doctor, and be sure he understands your instructions.
KAREN HUBE

My Alzheimer’s Mom
Losing a parent to this fogging of the mind is a tragic experience, but a blessing can spring from its depths.

By Kate Lardner

NO MORE JOKES for me about Alzheimer’s. But as sobering as my firsthand experience with the illness was, it produced a number of blessings. My mom was diagnosed with Alzheimer’s in 1998, at eighty-three, some months after a car crash she may have caused. From then on, she was never again the mom I had always known. Before my father became terminally ill—he was alive for the first two years of my mother’s six year ordeal—my parents relied on a variety of part-time helpers in their New York City apartment. My brother Jim and I and various grandchildren were frequent visitors. My mother had been an actress, and one of my parents’ assistants was a young actor who ultimately embraced the demands of the illness along with us (such as, you can’t give a damn about appearances when your mom roams half-naked out of a movie theater’s bathroom stall).

In the beginning my mother was painfully aware that something was wrong with her mind; she even felt like killing herself. She got fixated on things and repeated herself, just like everyone else with the affliction. To allegedly slow the disease, we dutifully slipped medication into her food; but I wanted the illness gone altogether. Even though sometimes there had been barriers between us, I wished my original mom would get on back here. A woman at the Alzheimer’s Association told me to “find the beauty” in what was happening. My friend Patricia said I just had to hold my mother’s hand.

In December 1999 my parents went to Los Angeles to participate in a photo shoot of surviving members of the Hollywood blacklist for the April 2000 issue of Vanity Fair. My father was a screenwriter, and both my parents were blacklisted during the McCarthy era. My mother’s neurologist predicted she would suffer a setback if she traveled; nonetheless, everyone was in favor of the trip. Eager to show her a good time, we seized the moment. My mom enjoyed being with people, especially fellow artists. And she is in the photograph, where she belongs.

Sadly, the following spring my dad was hospitalized with a metastasized brain tumor. From then on, my mother was under excellent twenty-four-hour care at home. When my father died, four months later, under hospice supervision, Alzheimer’s softened the horrible blow for her. She didn’t always remember that he had died. It was heartbreaking for me, however, to have to keep reminding her that he was gone. We signed my mom up at a local senior center that offered a couple of classes suitable for someone with her condition, and she continued going regularly— ushered by a caregiver or my brother or me—even after she was pretty far gone and wheelchair-bound.

And here’s the beauty part: the years my mom had Alzheimer’s brought us close in a way we’d never been. I am thinking of a time I was practically in her lap reading to her. She was still capable of reading aloud then, so we took turns. She was also capable of mangling the hell out of the pages like a kid, so when she held on to a book as I read, I had to make sure it didn’t tear. She would also yank it in her direction, which explains why I was practically in her lap, and I found I liked it there. With the veil of the illness between us, I could tell her I cared. “I love you, Mom,” I could say. “You do, sweetheart? That’s nice,” she’d reply. “I love you.” Three nights before my mother died, I sat on a couch, listening to music with her, holding her hand.

# # #

My Alzheimer’s Dad
When the disease ravaged a father’s mind, a son found a way to close the distance between them.

By Stephen Henderson

AS THEIR MINDS unravel, people who suffer from Alzheimer’s disease often surprise, even shock, their families when deeply hidden feelings and memories begin to surface. In his twilight, my father, who died from an Alzheimer’s-related illness at age eighty-four this past April, revealed himself as indelibly marked by two things: being a World War II veteran and having a strong faith in God.

William Douglas Henderson was a father to five children (I’m the baby, with three older sisters and a brother), a Baptist minister, a natural athlete and a lover of music who played a pretty funky trombone. A constant reader, he understood Hebrew, Greek, Latin, German and French. He’d memorized large portions of the Bible.

A loving parent, Dad also could be quite disengaged—something I found most frustrating as a child. I’d be yammering to him about a school play or a field trip, but he’d be brooding over a half-written sermon, a troubled parishioner or the wedding (or funeral) he’d soon preside over. His tendency to be distant only increased after Mom died, in 1988. Over the next decade, during which Dad met and married my stepmother, Alice, and subsequently began to suffer the earliest stages of Alzheimer’s, I didn’t notice much change in him. As usual, he appeared physically present, mentally not.

About six years ago, though, he began to show clearer signs of decline. Out walking Jake, his dog, Dad would get lost despite being only blocks from his home, in Hartford, Connecticut. He began to repeat his anecdotes over and over. As soon as a question was answered, he’d ask it again. And again. This was annoying, then vaguely amusing and, finally, sad.

So creepingly subtle were these changes, however, that Dad’s Alzheimer’s played tricks on my mind, too. I no longer recall any particular sequence to his symptoms; rather, it seemed that small problems slowly grew bigger. The phone rang, unanswered. Bills didn’t get paid. He caused a fender bender, and we had to take away his car. He started to confuse furniture with the toilet.

At one point, Dad started to relive his experiences as a soldier in Italy and North Africa. We’d find him in the backyard, shovel in hand, digging a large hole. Before breaking camp, he calmly explained, it was standard practice to bury leftover munitions.

In 2004 we realized he could no longer live at home but needed the constant supervision of a managed-care facility we found nearby. Here he was well tended to but declined nonetheless. At times, he would refuse to eat. As happens with some Alzheimer’s sufferers, Dad forgot how to swallow properly; it was saliva, collecting in his lungs and causing infection, that eventually killed him. Thankfully, before this occurred, Dad’s anguished memories of war faded, and he seemed at peace.

He was no longer able to read but toted about his beloved Bible anyway. Curiously, he still remembered gospel hymns he used to play on his trombone, so we’d bring hymnals and sing to him. Dad didn’t recognize us, his children, but he hummed along, smiling, as melodies flowed up from a safe space in his ravaged brain.

When younger, I was jealous that my father sometimes seemed more interested in the church than in me. This was all forgotten now. During those last, cloud-covered days, I was just happy to have found a way to bring him some sunshine.

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Ledge

A curtain, descending over that lustrous mind,
That mind that drew rich laughter
from almost everything,
That mind now expressed as pinched face,
furrowed brow,
Clenched jaw all fighting to understand,
Synaptic wires trying to find databases,
swinging unplugged,
Her face desperate to connect.
My son? Yes, my son. Lives? Lives? In New York!
He lives in New York!

They call it Alzheimer’s. I call it theft.
Does the door we open shed light on darkening self
Or throw too-harsh light on a befuddled present,
Forcing her to wonder who she is now?

Cancer, too, she has.
The crab escaping her removed ovaries
To unknown parts of her body.
They will poison the waters in which the crab swims
Trying to stop its relentless scuttling.

Together we seek a safe resting spot,
A place clear of Alzheimer’s and crabs,
If only a ledge, a solid place,
(And if only for a little while),
A place where we can look at the
beautiful—but dimming—view
Or, now close, into each other’s eyes:
Better, yes, now into each other’s eyes
Close enough to smooth that clenched brow.

Is that not our task: to seek, seek and to find,
However narrow, that ledge?

—John A. Calhoun

John A. Calhoun is the founding president and CEO of the National Crime Prevention Council and the author of the just-published Hope Matters: The Untold Story of How Faith Works in America (Bartleby Press; $23.50). He wrote this poem in memory of his friend Chris Webster.

10 Warning Signs of Alzheimer’s Disease

The Alzheimer’s Association produced the following list, which appears on its Web site and in Voices of Alzheimer’s (LaChance Publishing; $16.95), a collection of stories by people whose lives have been touched by the disease.

Though it’s normal to have some memory changes or fluctuations with age, it’s not easy to distinguish between these and the earliest warning signs of Alzheimer’s; therefore, experts suggest checking with a doctor if a loved one’s daily functioning is affected.

1. Memory loss Forgetting recently learned information is an early sign of dementia. What’s normal? Forgetting names or appointments occasionally.

2. Difficulty performing familiar tasks People with Alzheimer’s often find it hard to plan or complete everyday activities. They may lose track of the steps involved in preparing a meal, placing a telephone call or playing a game. What’s normal? Every once in a while forgetting why you came into a room or what you planned to say.

3. Problems with language People with Alzheimer’s often forget simple words or substitute unusual ones. For example, if they can’t find their toothbrush, they may instead ask for “that thing for my mouth.” What’s normal? Sometimes having trouble finding the right word.

4. Disorientation as to time and place Those with Alzheimer’s can get lost in their own neighborhood, forget where they are and how they got there, and not know how to get home. What’s normal? Being unable to recall the day of the week or where you were going.

5. Poor or decreased judgment Alzheimer’s sufferers may dress inappropriately, wearing several layers on a warm day or little clothing in the cold. They may show bad judgment about money, such as by giving away large sums to telemarketers. What’s normal? Making a questionable or debatable decision from time to time.

6. Problems with abstract thinking Someone with Alzheimer’s may have unusual difficulty performing complex mental tasks. What’s normal? Finding it challenging to balance a checkbook.

7. Misplacing things A person with Alzheimer’s may put things in unusual places: an iron in the freezer or a wristwatch in the sugar bowl. What’s normal? Temporarily misplacing keys or a wallet.

8. Changes in mood or behavior Someone with Alzheimer’s may exhibit rapid mood swings—going from calm to tears to anger—for no apparent reason. What’s normal? Occasionally feeling sad or moody.

9. Changes in personality Alzheimer’s can dramatically alter a personality, making someone confused, suspicious, fearful or dependent. What’s normal? Having your personality change somewhat with age.

10. Loss of initiative A person with Alzheimer’s may become very passive, sitting in front of the TV for hours, sleeping more than usual or not wanting to do usual activities. What’s normal? Sometimes feeling weary of work or social obligations.

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