Henry and Ida Frankel live in a cosy three-bedroom apartment in New York’s Washington Heights. Henry, a softly spoken retired architect of 85, is a short, handsome man with a bald head and small ears. Ida is even shorter, with fine white hair coiled in a bun. Although she is usually smartly turned out, smelling of powder and lavender, only Henry knows how much effort this entails. Whenever he tries to cut her nails, give her a bath or change her clothes, Ida’s small face contorts into something unrecognisable; she becomes like a fierce, cornered animal.
Henry’s and Ida’s families moved to New York from Austria in 1935, when both were 10 years old. They met at the City College of New York, and in 1948, two years to the day after graduation, they married. Allowing for the usual ups and downs, their marriage was a good one. They liked the same novels and films and shared a love of chamber music. Their apartment is lined with books and a large collection of Deutsche Grammophon LPs. There isn’t a CD in the house because, as Henry explained, they couldn’t bear to betray their beloved vinyl.
While Henry took to American culture right away, Ida continued to miss the Viennese world she had known as a child. And while Henry joined a mid-level architectural firm and embarked on a career, Ida struggled to find her identity. She wanted to be a writer, then a photographer, then a decorator. She wanted, she said, to carve out something of her own, but nothing ever came of it.
In her mid-70s, Ida began showing signs of Alzheimer’s. Her decline was gradual. She experienced the usual memory loss and attendant confusion, but life went on pretty much as before. Then one day, Henry came home to find Ida speaking to a framed photograph on the mantelpiece. They had many photographs of departed friends and family around the apartment, and Ida began to go from one to another, telling aunts and cousins whatever she happened to be thinking about. After the initial shock wore off, Henry became used to her chatter and resigned himself to this new quirk of hers. He’d known her friends and relatives, and he didn’t mind their playing a role in her imaginative life.
Once Ida turned 80, she also began having conversations with books. Not in the sense of communing with the characters, but with the authors themselves, or, more accurately, with their jacket photos. This Henry could not get used to. He never knew when he might come across Ida sitting across from a book, propped upright on the coffee table, speaking to the author photo. “Thank God,” he said, “they didn’t speak back to her.”
To Proust, she might talk about her childhood in Vienna; to Virginia Woolf, she spoke of her honeymoon and how Henry had once got lost in Venice. To Rilke, she spoke about fashion, porcelain and popular music. Henry never knew what she might say; he just knew that after a while he had stopped figuring in her conversations entirely. As time passed, he began to feel like an intruder in his own home. Aside from occasional comments about shopping and schedules, she barely spoke to him at all, keeping the warmest part of herself for her two-dimensional friends. “She talks to them with the tenderness that’s missing when she talks to me,” a bereft Henry told me. What do you say to someone whose wife prefers photographs of deceased authors to him?
By the time Henry and I met in December 2015, he could no longer separate his grief from his consternation. But because of his gentle manner and natural reserve, you could miss the anger simmering beneath his words, an anger directed mostly against himself. Had he been a better husband, he told me toward the end of our first conversation, he might have saved Ida from the bleakness and indignity of Alzheimer’s.
One morning, Henry awoke to find Ida chattering to Thomas Mann and was struck by the thought that their shared appreciation of certain writers, which had once united them, now formed a wedge between them. How was he supposed to compete with the author of Buddenbrooks? He couldn’t help it: He became envious of the photographs and sometimes eavesdropped. Then, when she accused him of spying, he felt terrible.
Despite how alienating he found his wife’s delusions, Henry remained protective. In fact, he bristled when her doctor or friends suggested medication. As long as she was happy, Henry reasoned, there was no reason to deprive her of a rich inner life.
“At least one of us has a social life,” he joked to me. One sunny afternoon when Henry and I met at the Cloisters museum near his home in Washington Heights, he informed me that the night before, Ida had invited a guest for dinner: the Austrian writer Stefan Zweig, who died in 1942. “I guess I should feel like a big shot having Stefan Zweig for dinner,” Henry muttered. He didn’t bother trying to sound amused.
The dinner had not gone well. After putting food on the table, Ida had directed all her remarks to the cover of Zweig’s memoir, The World of Yesterday, except when she asked Henry to pass a roll to their guest. This request cracked his self-resolve. “You have ridiculous delusions!” he shouted. “It’s a picture! Pictures do not eat! Your craziness is making me crazy.”
Unperturbed, Ida prepared a plate for her guest. But when she urged Zweig to take a bite, Henry blurted, “I told you! You can’t feed pictures. This is why you need to listen to me.”
Recounting this to me, Henry smiled, “You know, it felt good telling her.” But the feeling had been quickly replaced by guilt. Ida sulked and stopped eating. Touched by her vulnerability and the absurdity of his small victory, Henry had apologised and begged for forgiveness. His outburst, he confessed, had left him rattled and miserable. Perplexed by his own behaviour, he said, “People talk about my wife like she has a problem. But it’s me. I’m the one with the problem.”
Although we expect irrational behaviour and lapses of judgment from Alzheimer’s patients, we’re often puzzled by the baffling behaviour of caregivers themselves, many of whom mirror the denial, resistance, distortions, irrationality and cognitive lapses of the people they’re caring for. Carers, despite recognising that their charges are ill, find themselves behaving in ways they know are counterproductive: arguing, blaming, insisting on reality, and taking symptoms personally. Because caregivers are “healthy”, we assume they should be reasonable, which is what makes their inability to adapt to the disease feel like a personal shortcoming.
Traditionally, neurological case studies have focused on the “abnormal” brain and its effects on the patient. But what about the people closest to the patient? Might not their reactions, their struggles, their own disorientation in the face of neurological illness also illuminate the workings of the human mind? The “normal” mind, after all, is never just a blank slate, even at birth. Our brain, as it happens, is “ultra social”, riddled with instincts, drives, needs and intuitions, which dictate our unconscious expectations of others. It is these cognitive proclivities that get in the way of understanding and dealing with dementia.
Although “dementia” is still commonly used to identify an illness, the term, in fact, covers a cluster of different symptoms associated with cognitive decline, such as memory loss, poor emotional control and difficulty with judgment, planning and problem-solving. Dementia can be temporary and is occasionally caused by drugs, dehydration or a vitamin deficiency, but dementia disorders such as Alzheimer’s disease, Lewy body dementia, frontotemporal dementia and vascular dementia are diseases, and they are irreversible.
More than 55 million people live with a dementia disorder worldwide, and by 2050 that number is expected to almost triple. Alzheimer’s disease is the most common type of dementia, and 6.5 million people in the US exhibit symptoms ranging from mild cognitive impairment to full-blown Alzheimer’s. Although ageing is the strongest risk factor, dementia does not exclusively affect elderly people; early onset dementias (where symptoms appear before the age of 65) account for up to 9% of cases. The global cost of treating these disorders is estimated to be $1.3tn (£1.1tn) and will more than double in 10 years.
Looking after the afflicted in the US are well over 16 million caregivers (the number worldwide is too large to venture a guess). It is these caregivers, most often children and spouses, who do not merely witness a family member’s cognitive decline, but become part of it, entering a reality where the rules of time, order and continuity no longer apply.
When memory disappears, the world changes not only for the afflicted but also for those who look after them. Because memory with its occasional lapses, slip ups and narrative-making ability is so integrated into every aspect of life, its disappearance is almost incomprehensible. We simply have no cognitive framework that allows for its absence in others. Human beings, after all, did not evolve to function in isolation. Each person’s cognition is dependent on the cognitive faculties of those around them. So when one person’s memory is impaired, those close to them also become disoriented.
To an outsider, a patient’s symptoms will undoubtedly seem clinical, a product of an illness, but to a familial caregiver the same symptoms can feel like an act of betrayal rather than a neurological deficit. Because when patients forget, it’s caregivers who end up feeling erased, their words, efforts and sacrifices often unacknowledged or denied. Without another person’s memory working alongside their own, collaborating on what both see, hear and remember, caregivers may feel that nothing they do is ever enough, that they are not enough. And if this was already part of a family dynamic, such dismissal only intensifies the hurt that is already there.
Ida’s memory loss constituted a loss for Henry as well. No longer sharing the same memories or able collectively to form new ones, Henry felt that he had lost a friend, a partner, a part of himself. This was his wife, his friend of more than 60 years. When he was away from her, he still missed her: her voice, her scent, her mannerisms. Most of all, he missed feeling useful. Now, when he cooked dinner or helped her dress, she didn’t seem to care.
Mocking himself, he told me: “What do I expect? For her to say: ‘Ooh, you are such a good husband’?” And what made it worse is that Ida’s dementia was creating a world in which Henry played only a minor role. He knew she was sick; he knew she could not control how she felt and behaved, and yet he could not shake off the sting of Ida’s daily rejections.
Henry was, as he readily admitted, a people pleaser. First, he had tried to please a difficult mother and then difficult clients and then, of course, his occasionally disappointed wife. Even after Ida fell ill, after she no longer recognised him except as someone who looked after her, he still wanted to make her happy. But he also wanted her to know that he was trying to help. He considered this a weakness, wanting the good opinion of others in order to have a good opinion of himself. And he felt ashamed of trying to win his wife’s approval, knowing that his first concern should be her welfare rather than his self-esteem.
Henry had internalised the message constantly dispensed to caregivers: it’s the disease, not your wife (husband, mother, brother, etc). So when caregivers lose their temper or feel slighted by their patients, they often reprimand themselves for taking things personally, for wanting the approval of people, who are neither cognitively nor emotionally equipped to give it. But they shouldn’t. Simply because we think we should know better, or believe we should be immune to other people’s opinions, does not make it any easier to keep our sense of self independent from other people’s thoughts and actions.
Henry’s reaction to Ida’s dismissive behaviour is not only understandable; it is, in fact, biological. As social psychologist Matthew Lieberman explains, the medial prefrontal cortex, the part of the brain activated when we think about who we are, is also activated when we reflect on how others perceive the world. Neurologically speaking, there appears to be no special place in the brain that is hermetically sealed from the influence of other people. Lieberman goes further, describing the medial prefrontal cortex as “a superhighway where others influence our lives”, which makes the self no less than “evolution’s sneakiest ploy … a secret agent” designed to make us receptive to other minds by accommodating their thoughts and ideas. Neurologically, there is little difference between thinking about ourselves and thinking about others. We don’t actually “choose” to be preoccupied with people. Somewhere along the line, thinking about others became a neural habit, something the brain does automatically.
As an example of our susceptibility to how others behave, consider a scenario in which three people find themselves in a nondescript room. They happen to be participants in an experiment. They sit around, waiting, until one of them suddenly spies a ball in a corner. He picks it up and casually tosses it to another person, who then tosses it to the third. Soon they’re playing a nice, unhurried game of catch – until, without warning, two of them stop playing with the third. For no apparent reason, they ignore him, tossing the ball only to each other. The person left out can only watch helplessly as the game continues without them.
As it happens, this interaction is the experiment. Two of the people are confederates; the third isn’t in on the secret. The game, created by the psychologist Kip Williams, is called Cyberball, and because the stakes are fairly low, we might, picturing ourselves in the role of the third person, believe we would take our exclusion from this silly game in our stride. But we would be deluding ourselves if we thought we wouldn’t feel unnerved by being left out.
This point was reinforced by Lieberman, who replicated the Cyberball experiment using functional magnetic resonance imaging (fMRI). He asked people to play digital Cyberball with two other players. Although the subjects believed they were playing with real people, they were actually playing with programmed avatars who eventually began to exclude the subject. As expected, a good many of the participants expressed hurt and anger over the rejection. The real surprise came when participants were informed that their “opponents” were, in fact, a computer programmed to reject them. Even after they knew it was a machine, they still experienced social pain.
I thought about this experiment when Henry confessed that he was jealous of Stefan Zweig. “Jealous of Stefan Zweig!” he repeated incredulously. “Jealous of Stefan Zweig!” He couldn’t believe it. But I could. If we can become upset by a computer’s rejection, how can we not feel social pain when ignored, dismissed, or accused by people we know and love? Ida’s dementia made her no less a person to Henry, nor did it matter that her other “relationships” were imaginary. What mattered was that Ida was living her life without him.
Our biological makeup is so intent on maintaining social connections that the source of the rejection is less important than we might imagine. Biology, after all, is interested not in nuanced thinking but in survival, and to help us survive, we live communally. Perhaps this is why human beings, along with other mammals, feel isolation or social rejection as painful. Rejection literally hurts. Physical pain and emotional pain might feel different, but they derive from a common neurobiological source. Social pain is thus an adaptive signal that urges us to keep close; and just as physical pain alerts us to something that could be harmful, social pain alerts us to the risks associated with isolation.
The danger of isolation is well established. It tampers with the immune system and may be as detrimental to bodily health as lack of exercise and high blood pressure. One well-known study suggests that loneliness is comparable to smoking 15 cigarettes a day. We also know that loneliness raises the odds of depression and anxiety. Less well known is its effect on cognitive health: loneliness shortens attention span and interferes with judgment and self-control, the very attributes required to deal with a patient’s fixations and delusions.
Is it any wonder then that caregivers can become as volatile as the people they care for? It wasn’t cruelty that made Henry snap at Ida. Her symptoms, in effect, produced Henry’s sense of loneliness, which, in turn, decreased the emotional flexibility he needed to deal with the disease. When patients retreat into their own world, we may intellectually acknowledge this is a symptom, but emotionally we feel abandoned and thus find it more difficult to control our emotions.
Of course, one of the ironies of Alzheimer’s is that the brain’s adaptive social instincts can now work against us. Because providing care and receiving care are biologically linked, Ida’s rejection of Henry’s ministrations naturally makes him feel uncared for, and when he feels rejected by Ida’s loss of interest, he tries to relieve the pain by demonstrating his value. But when Ida fails to notice or refuses to accept his ministrations, the pain only motivates him further.
As Henry ruefully observed during one of our last meetings: “I suppose I should be happy that she’s happy. She has her books and her pictures, and when I play music for her, she’s in heaven. She really doesn’t need anything else.”
He then fell silent for a moment.
“But how do I get used to the fact that she has no use for me?”
This is an edited extract from Travellers to Unimaginable Lands: Dementia, Carers and the Hidden Workings of the Mind, published on 2 March by Profile
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