Love and Loss: Living with Alzheimer's Disease
Elisabeth Barrett Schalk ’63 has always been a charismatic presence: a warm and lively woman whose keen intelligence is not intimidating but inviting. When I first arrived at Vassar as a wide-eyed freshman in 1980, she and her husband David, both old family friends, took me under their wing and made me feel instantly welcome.
I took one of David’s history classes, a popular course called The History of Justice. It’s the kind of course you get so much out of you never forget it, like Art 105—106: Introduction to the History of Art.
But today the Schalks are on a different kind of journey, and the glint in Elisabeth’s eyes, although still there, reflects more trouble than joy. Elisabeth has been diagnosed with Alzheimer’s disease, and it has turned their world on end. I spent a day with the Schalks in Poughkeepsie in mid-October and left feeling bereft. It is sobering and ironic to see how quickly change can come in what is commonly known as a long and protracted illness. I had just had lunch with the two of them in Manhattan last spring, but six months later I found Elisabeth markedly changed. While still warm and gracious, she seemed so halting and unsure. She laughed in the right places and followed the conversation, but it was clear that this independent and utterly capable woman was now relying on David to navigate her through the afternoon. The interview was meant to be a three-way discussion, but it quickly became evident that that would be impossible. When I made a point of shooting questions directly Elisabeth’s way, she could only answer with a few soft-spoken words. What an awkward thing it was to have a person sitting there and to feel somehow that she was not in the room. I could only imagine what anguish and sorrow David was experiencing every single day. In fact, when I mentioned this to David, he said, “Unless you live it, it’s probably beyond imagining.”
The official diagnosis came in 2006 when Elisabeth was only 65, but the small indignities that are the hallmarks of Alzheimer’s disease started tripping her up much earlier. According to David, the first sign of trouble dates back as far as 2001, when Elisabeth was working as the head of development for International House, a center for global leadership in New York City. This woman who once juggled a full-time job while enrolled in an intensive M.B.A. program at the same time started finding routine paperwork challenging. Details were being overlooked. Her boss grew frustrated. David says that he was “sad and very, very worried.” The spouse always knows first, he told me, and though he knew something was terribly wrong, Alzheimer’s disease was simply not on his radar.
Rather than do her job anything less than perfectly, Elisabeth quietly resigned. At the time, her father was in his nineties and in frail health, so leaving her work created a good opportunity — an excuse, really — to care for him. But David knew it was not what she wanted.
“She loved her work. She would be in New York City right now if it wasn’t for this illness,” he told me. “She could have worked another ten years at least.”
After resigning from International House, Elisabeth did take on a few other short-term jobs. Scientists have found that highly intelligent people diagnosed with Alzheimer’s disease somehow find a way to conceal memory loss. They work around it, compensating so that they can continue to function. And Elisabeth functioned well for a long time, but eventually, David says, sophisticated computers and new technology became overwhelming. “I knew in my heart of hearts that work was just too hard for her,” he says. In 2003, Elisabeth formally retired at age 62.
Elisabeth Schalk is now part of what epidemiologists have officially labeled an epidemic. As many as 5.2 million Americans are living with Alzheimer’s disease. A quarter to a half a million of them are under the age of 65. The most recent statistics from the Alzheimer’s Association read like a doomsday science-fiction scenario: Ten million baby boomers will develop the disease as they age. By the year 2010, there will be almost half a million new cases every year; by 2050, that number will approach one million. The Alzheimer’s Association site expresses these statistics another way as well: “Every 71 seconds, someone in America develops Alzheimer’s disease,” it says; but by mid-century, “someone will develop Alzheimer’s every 33 seconds.” The idea of diagnoses marked in seconds conjures up a ticking sound, a ticking time bomb.
What’s causing Alzheimer’s disease? Is it genetic? Is it environmental? How do we stop it? There are no comforting answers. First described by German psychiatrist Alois Alzheimer back in 1906, today it is the most common form of dementia: a degenerative disease of the brain that ultimately robs its victims of their memories and personalities. The body can often remain strong and healthy while the mind slowly deteriorates. Adjectives frequently used to describe it include insidious, unforgiving, and cruel. David Schalk calls it an “evil, nagging presence.” Elisabeth believes it is worse than cancer.
Scientists have been able to determine over the years that the cause of Alzheimer’s is linked to the buildup of what are called amyloid plaques and tangles in the brain that gradually interfere with brain function. But according to Vincent Marchesi, a professor of pathology at Yale University, “We don’t know when it starts, how it starts, or where it starts.” Marchesi says that tremendous progress been made toward understanding this disease in the last decade, yet without knowing what triggers it and when it actually begins, it is virtually impossible to treat patients early, when therapies might be most effective. It is possible, Marchesi says, that the process could actually begin five to ten years before symptoms ever show up, and he is hoping that some sort of early detection can be developed — a blood marker, perhaps — that might show Alzheimer’s disease in its infancy. Currently, the most accurate tools for diagnosis are a battery of tests, imaging scans, and spinal taps that only reveal the disease when it is already progressing.
A scroll through the archived news releases on the Alzheimer’s Association website details literally hundreds of studies. Theories are being tested and hypotheses put to work, both in this country and all over the world. New compounds and vaccines are in the pipeline. But the brain is notoriously difficult to study, and progress is painstakingly slow. There has been no “eureka” moment, and to date there is no drug available that can stop or reverse this disease. The optimistic view is that with so much research going on, something is bound to yield a positive result. Future generations may be in luck, but this generation will have to rely on hope.
The handful of medications currently available do little more than temporarily slow the inexorable progress of the disease. Elisabeth Schalk is taking a cocktail of the newest and most successful drugs to date: Razadyne, Namenda, and Foltx, a dietary supplement. David says that they seemed to help for a time; but, as many Alzheimer’s experts say, this is one disease that eventually outsmarts even the best medication. “There is a powerful sense of irreversibility,” David says. “If the patient plateaus for a little while and does one thing that [she or he] used to be able to do, you know intellectually and rationally that fairly soon afterward there will be another thing the person cannot do or remember.”
A further frustration: Elisabeth cannot participate in any of the clinical trials going on because she has had two bouts of breast cancer over the last decade. Cancer patients are generally excluded from drug trials.
In the absence of that “magic pill,” much of the cutting-edge science and research into living with Alzheimer’s disease is being focused not on the patient, but on the caregiver. This is where the story becomes about David, who had to reach the painful conclusion early on that he could not take care of his wife 24 hours a day, seven days a week. As a historian trained to research and analyze information, he delved into books and articles on this topic so far from his field. He found particular comfort in a book about caregiving called The 36-Hour Day.
“My fundamental goal,” he told me, “is to make Elisabeth’s existence as unpainful as possible, as harmonious as possible, as peaceful and as comfortable as possible; but I also know that if I devote every hour of that 36-hour day to looking after her, I will fail.”
The Schalks sought the advice of social worker Cynthia Epstein at the New York University Medical Center. An expert in aging and dementia, she says her role was to help them “process the experience.” Epstein says that because managing Alzheimer’s disease is so difficult medically, the success comes from what she calls “nuanced, sensitive, informed caregiving.”
The Schalks are lucky in that, although they are both profoundly sad, neither one of them is particularly angry. Elisabeth is handling her situation with great grace and bravery; valor is the word David uses to describe it. And David, as his friends, colleagues, and former students know, is a patient and gentle soul who has the worldview of an intellectual: “Anger for me as a sentiment is useful when it can have a positive purpose or a positive goal,” he says. “But if I am angry at a disease that is incurable and unstoppable, it’s like banging your head against a stone wall.”
Still, Cynthia Epstein says that in her counseling, she always invites anger. She sees it as “the other side of sadness.” Both emotions seem inescapable in this situation, as the alternative is denial.
To cope with their day-to-day lives, the Schalks have set up an intricate system of caregiving for Elisabeth so that David gets a break to pursue his own interests. She attends an adult “daycare center,” a term she sharply communicates to me how much she dislikes. But the facility, called Daybreak, has been a godsend for both of them. The trained caregivers there arrange picnics, concerts, and dancing, and treat the patients with great respect. Although their abilities may be regressing, Epstein emphasizes that people with Alzheimer’s disease are not children, and that to treat them as such would take away their dignity.
In addition, the Schalks have decided to raise as much awareness about Alzheimer’s disease as they can. Despite its looming toll, the disease remains in the shadows of other more “high-profile” illnesses. Ronald Reagan’s case brought it into the mainstream consciousness. A recent movie called Away from Her even had Hollywood paying attention: Julie Christie was nominated for an Academy Award for her portrayal of a woman suffering from the disease. But most families dealing with it are toiling away in loneliness and anonymity. It is still stigmatized and misunderstood. Early on in her illness, Elisabeth traveled to Albany, New York, with her local support group to lobby lawmakers for more funding and publicity. Her poignant plea was videotaped (along with equally moving testimony from David) and produced by the Alzheimer’s Association for a similar campaign in Washington, DC. The video has had more than a thousand views on YouTube, where it can still be seen. The Schalks are making an impact any way they can.
In the meantime, Elisabeth is no longer driving and cannot be left alone. She has trouble with simple things we all take for granted, like making a cup of tea or setting the right temperature in the shower. Once a lifelong “news junkie,” she can no longer navigate the New York Times. David now does all the cooking.
At this point in our conversation David tells me modestly, “I’m a fairly decent cook” — which makes Elisabeth perk up and add, with a big smile, “You’re a wonderful cook!” Sometimes, flashes of her old self rise to the surface.
“Alzheimer’s disease steals away the person,” David says, “so you have to hold on to the person as long as you can.” In that spirit, the Schalks are determined to continue to do the things they still love. They see friends, go to movies, enjoy art and concerts. Their greatest regret is that they can no longer travel, something they had long planned to do once they retired.
David tells a heartbreaking story about how, two years ago, he and Elisabeth were cleaning up after dinner, when a melancholy song played on the radio. It was the old Scottish ballad called “Loch Lomond.” “You take the high road, and I’ll take the low road,” the song goes, “and I’ll get to Scotland before you, and me and my true love will never be again on the bonny, bonny banks of Loch Lomond.” The song instantly made the Schalks collapse into a tearful embrace, because at that moment, David says, they realized they would never again walk along the banks of the Seine together — something they did on their honeymoon in 1964, and have continued to do regularly over the 45 years of their marriage. Then they made coffee, sat on the front porch, and had a long talk about Elisabeth’s illness and what it would mean for the rest of their lives.
The Schalks haven’t really spoken about what’s happening to them in a philosophical way since then, David says. Elisabeth can no longer tolerate deep or upsetting conversations. But observing the profound love and trust between them, one could argue that maybe it’s better that way. Maybe the one blessing of this dreadful disease is the power with which it forces people to live in the moment, as the past can’t be remembered and the future can’t be imagined.
The images of Elisabeth and David Schalk are part of Michele Muir’s photo essay “Every 71 Seconds: Memories of Alzheimer’s.” Muir, whose father has Alzheimer’s disease, has been spending time with persons in various stages of the disease and caregivers, exploring their relationships and how they cope. An exhibit of her work will open June 20 with a reception at Mill Street Loft in Poughkeepsie. The exhibit will continue through July. For more information, call 800.872.0994 or 845.471.7477.
-Elizabeth Kaledin '84 is currently a journalist and television anchor working for NY1 News in New York City. Prior to that she was the medical correspondent for the CBS Evening News.
Photo credit: Michele Muir
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