When memory disappears, something more than memory gets lost. This is how a world begins to unravel – and how caregivers unwittingly become part of the chaos
In November 2010, when I was 25 years old, I moved in with a man who was 98. This man, whom I’ll call Mr Schecter, wasn’t a friend or relation or anyone I knew. He was a Holocaust survivor in the first stages of dementia, and I’d been hired to look after him. Although my background was in clinical psychology, I was by no means a professional caregiver. I was employed because Mr Schecter’s son – I’ll call him Sam – had seriously underestimated his father’s condition. Sam’s mistake was understandable. The most obvious paradox of dementia is the victim’s frequent inability to recognise it, and Mr Schecter went about his life as though burdened by the normal aches and pains of aging rather than by an irrevocable and debilitating illness. If he put the laundry detergent in the oven or forgot which floor he lived on, he’d shake his head and sigh, Mayn kop arbet nisht (“my head doesn’t work”). But it was a lament, not a diagnosis. And this denial, both clinical and profoundly human, led Sam to misjudge the illness as well.
Mr Schecter lived in a two-bedroom apartment on a pleasant, tree-lined street in the Bronx. For a man nearing 100, he was amazingly spry. Short, solidly built, with a firm handshake, Mr Schecter exhibited at our first meeting all the hallmarks of dementia. He repeated himself, his mind wandered, and he asked the same questions over and over. He also insisted that he didn’t need help, that he still went to work (he had, of course, stopped), and that if I rented a room from him, it would be on a month-by-month basis. More than anything else, he wanted me to understand that he had agreed to the arrangement only as a concession to his son.
As for me, any doubts about taking up Sam’s offer disappeared when I stepped into Mr Schecter’s apartment. The unimaginative furniture, framed pictures of grey city streets and sombre landscapes, and hundreds and hundreds of jacketless books, as many in Yiddish as English, seemed to contain the world of my grandparents. It was an apartment out of time, and perhaps unconsciously I felt that Mr Schecter’s past offered a way out of my present. I had grown alienated from my studies and had recently ended a relationship that had both consumed and confined me. I felt adrift, unsure of what to do. So when I learned that Mr Schecter, like my maternal grandfather, had been interned in a Soviet labour camp during the second world war, I naively thought I could protect him, that I could somehow compensate for the resilience that had sustained him in the past.
But I had another reason as well. Having studied pathology primarily through the dispassionate lens of quantitative analysis, I saw Mr Schecter as an opportunity to observe how a person fights to preserve his sense of self, even as a neurological disease is eroding it. Although empirical research – brain scans and blood analyses – approaches dementia like any other physiological illness, it can inadvertently distance us from what Oliver Sacksreferred to as “the inner state, ‘the situation’” of the person. For unlike diseases that attack the body, dementia, by degrading the physiology of the brain, induces an altered state of consciousness, a consciousness both like and unlike our own, both a mirror and a mask.
Dementia, of course, has been identified, classified, and even anatomically annotated. And because we’ve labelled the anomaly, describing it as something carved out in the brain, a swerve from the norm, a deterioration of cognitive ability, we believe we understand it. Having lived with a dementia patient for more than a year, I am not sure I agree. I believe that something remains hidden, something we’re not inclined to see, precisely because dementia steers us away from it.
When someone loses an arm or a leg, we know exactly what’s missing; but with the loss of memory, something greater than memory is at stake. Memory isn’t just about remembering, and memory loss isn’t just about forgetting. Memory is responsible for creating continuity, meaning, and coherence both for ourselves and for those around us. Its integration into every function of life, from speaking and learning to the forming of relationships, actually makes its loss all the more difficult to comprehend, since the visible repercussions – repetition, confusion, anxiety, and mood swings – distract us from the deeper, more intangible privation.
About 5.3 million people in the US experience some form of dementia, ranging from mild cognitive impairment to Alzheimer’s disease. By 2050 the affected population is projected to triple. In the UK, dementia affects about 850,000 people. In September, George McNamara, head of policy at Alzheimer’s Society, stated that “Dementia is already the biggest health challenge this country faces. It costs the UK in excess of £26bn, which equates to £30,000 a person with dementia – more than the cost of either cancer or heart disease.”
Dementia not only affects the minds of its victims; it also creates a world so fragmented, so skewed and redundant – so indifferent to normal rules of behaviour – that caregivers unwittingly become part of the madness. And this, unfortunately, is what the doctors and the guidebooks offering counsel to caregivers often fail to notice. Because we automatically posit a clear distinction between caregiver and patient, between the normal and the abnormal, we don’t see that the true burden for caregivers is, in fact, the absence of such a divide. When a loved one loses cognitive purchase, it’s not only his or her world that begins to unravel, but the caregiver’s as well.
“So where are you from?” Mr Schecter asked as soon as I put down my bags. “Where did you go to school? Where do your parents live?”
“Russia,” I told him, adding that my family had moved to San Francisco in 1992 and that I’d gone to the University of California at Davis, then Columbia for graduate school.
He digested this for about 30 seconds and then looked me in the eye. “So where were you born? Where did you go to school? Where do your parents live?” He didn’t ask these questions every day for a year. He asked them five or six times a day, every day, for a year. Other questions soon flew at me – which food in the fridge was mine, what time was his son coming, where were his keys, had the morning newspaper arrived – questions that came with such mind-numbing regularity that I began to think we were performing shtick for an invisible audience.
The more Mr Schecter tried to fill in the gaps of his memory, the more automatic his behaviour became. Every time I heard him wind his mechanical wristwatch, check his pockets for keys, or relentlessly pace the hallway at night, my body would tense up, unnerved by his anxiety and my own helplessness. His desperation to remain intact enveloped me. It became an assault on my senses, an assault on possibility and hope, and it made me feel that nothing could ever change.
But I knew I had to endure it. Because for those stricken by dementia, repetition is not merely a symptom but also a refuge, a coping mechanism that attempts to counter memory loss. Such loss, after all, is frightening, and people with dementia vainly attempt to impose order on their surroundings. What mattered to Mr Schecter was not my answers to his questions, but the act of communication, of following a familiar script, of engaging in normal behaviour. That was what kept the chaos at bay. And because it was my job to ground him, I became a co-conspirator in normality, or at least the pretence of normality. I wasn’t just an ear that Mr Schecter could talk into; I was a presence that reassured him of his own existence.
One of the strangest outcomes of living with a dementia patient is that only one of you becomes used to having company. While I quickly became accustomed to Mr Schecter’s accented English, his dark, mottled skin, and his curious shuffling gait, which pitched him forward even as he remained upright, he would often be startled on seeing me in the mornings or finding me in the kitchen at night. He’d forgotten that I was in the house and what I looked like. After a while, he began to sense that he wasn’t living alone: someone was around who could tell him the day of the week or what time Sam was coming. But that someone was less a roommate than a vaguely familiar guest, a short, dark-haired woman whom he would graciously invite to join him for lunch or dinner, usually offering her her own food.
For the most part, I was a comforting presence, someone who made him tea and the occasional dinner, someone he could talk to – and how the man liked to talk! There were stories about Warsaw, his imprisonment in a Siberian labour camp, his eventual release and relocation in Sweden, and his emigration to America. No matter how many times I heard the same stories (and the loops got shorter by the week), I could not, as Sam kindly suggested, ask him to stop. How could I eject Mr Schecter from the world that reassured him of who he was? Indeed, there came a time when I knew every intonation, every chuckle, every syntactic turn. I knew when he might lapse into Yiddish or say a word or two in Polish. I knew when he would pause and struggle with a name or date – at which point I’d chime in with the answer and he’d open his eyes in amazement and unfailingly exclaim: “You know?” And I would say resignedly, “I do.”
This incessant repetition became the basis of our relationship. He relied on me to assure him of the status quo, and I, in turn, relied on his dependence, taking it as proof of our closeness. Sadly, as the synaptic connections of his memory weakened, mine only grew stronger. I didn’t just listen to him, I felt that I stood to inherit his world. I knew a moment would come when he’d forget for ever the names and faces of his parents, the hoyf on Geisha Street where he played, and the Medem sanitarium, outside Warsaw, which he helped run. He would forget the joy and disbelief of miraculously running into his brother in the Siberian forest while both were being forced to work in neighbouring labour camps, just as he would forget the tragedy of losing his brother to pneumonia six months after they were reunited. So his memories seeped into me, until I felt that his world and mine formed a collective reality.
Although dementia often makes its victims uncharacteristically open, I couldn’t help but feel that he was confiding in me because of me, and not because of his illness. Why else did we sit every day in his living room, not two feet apart, as he spoke in the emotional register one reserves for a dear friend? And when his mind invariably turned to his first wife’s death and he confided with tears in his eyes that as hard as it was on him, it was even harder on Sam, he would grip my hand so hard that I felt his despair course through my body. So I would inch towards him as he began to lean towards me, and pressed together, we sat with grief in our arms, in silence.
But only as long as nothing distracted him. For when the phone rang, jarring us apart, it broke more than just the silence. Mr Schecter would trundle off to the desk in the hall while I went to my room to give him some privacy. After a minute of conversation, I could almost hear Sam say over the wire, “How is Dasha?” To which Mr Schecter invariably replied, “How should I know? She’s sleeping, the door to her room is closed, the light is off.” (The door was never fully closed, and the light was always on.)
These disruptions, when I abruptly disappeared from his consciousness, never failed to shock me. Each time he hugged me or visibly relaxed when I found his keys, I felt recharged by his sincerity and affection. But each time he forgot our conversations or what I had done for him, the same hurt and disbelief welled up inside me. I couldn’t seem to harden myself, despite everything that I read about dementia. Only gradually did I begin to comprehend that my own healthy brain was as incapable of adjusting to him as his brain was to me.
An insidious paradox works against understanding dementia. The rules that guide a normal memory make it nearly impossible to accept memory loss in others. Apparently, the healthy brain needs to believe that memory is reciprocal and communal, which makes sense, since without such expectation we couldn’t form bonds of affection or trust or, conversely, feelings of antipathy or fear, all of which are necessary for survival.
The very idea of memory loss is counterintuitive. Even when we know that dementia is mercilessly erasing experiences, we still feel that its victims are capable of keeping emotional tabs on their relationships, since those bonds were formed gradually over time. Memory isn’t just a mechanism that records events; it’s an internal clock responsible for the impression of moving forward in time. Because Mr Schecter’s clock had stopped while mine continued to tick, he and I were perpetually out of sync. Because I remembered, I derived meaning from our encounters, while he, who soon forgot everything, could not. Although I spent a great deal of time with Mr Schecter, he (in his reality) did not spend time with me – which is why each of us, in a very different way, ended up living alone in his apartment in the Bronx.
Like many refugees, Mr Schecter held fast to his European heritage, making few accommodations to his new home. The Beatles, Michael Jackson, Marilyn Monroe, OJ Simpson might as well have never existed. Instead, Mr Schecter read the Yiddish Forward, helped put out a Yiddish newsletter, and joined the board of the YIVO Institute for Jewish Research, where he also worked as a volunteer archivist, collating various materials in Polish, Yiddish, and Russian. But now that he had stopped going to work, he began to fixate on things he could control. Aside from repeatedly calling his son, he channelled his energy into rearranging the food in the fridge or fiddling with the electric fixtures and lamps.
To Sam, his father’s behaviour was consistent with his usual inability to acknowledge or adapt to change.
Sam: Stop trying to fix the lamp in your room. It’s dangerous.
Mr Schecter: I don’t touch the lamp. I don’t know what you want from me.
Sam: You mess around with the lamp and the wiring. That’s how you cut your hand.
Mr Schecter: (agitated): I never touch the wires. What wires have I touched?
Sam: Don’t argue with me! Just do as I say. It’s for your own good.
Mr Schecter: When do I argue with you?
Sam: You always argue with me. You’re always giving me trouble!
Mr Schecter: No one ever said I give anyone trouble.
Sam: You’re giving me trouble right now!
Mr Schecter: How? How am I giving you trouble?
Sam: You don’t listen to me. And if you keep arguing and contradicting me, I swear I’ll stop coming to see you.
Mr Schecter: (worried): I promise. I promise I will listen to you 100%.
Sam: OK. Now promise me you’ll stop touching the lamp in the bedroom. Repeat it to yourself – “I will not touch the lamp!”
Mr Schecter: (indignant): I never touch the lamp. What lamp?
Sam: Goddammit, stop arguing with me!
Mr Schecter: When do I ever argue with you?
One of the cruellest aspects of dementia – one that guidebooks are loth to mention – is that its symptoms often recapitulate a laundry list of aggravating behaviours that have always marked a familial relationship. For Sam, the behaviours that had nettled him when his father was 60 irritated him no less now that his father was almost 100. Dementia was simply another reason to find his father deficient. To help Sam over this hurdle, I showed him pictures of the dementia brain, with the hippocampus pitifully shrunken to half its normal size. Staring at the coloured images of the healthy versus the diseased brain, Sam looked appropriately sombre. Here was visual evidence that his father was no longer the person that Sam had been fighting for decades, no longer someone responsible for his emotional outbursts. Yet only an hour after Sam had viewed these photographs, he and his father were shouting at each other again.
Sam’s inability to make the shift surprised me. And I was reminded that the line between a healthy yet fallible memory and one compromised by dementia isn’t always apparent, since both give rise to similar denials and distortions. So it’s often difficult to differentiate personal idiosyncrasies from natural cognitive decline. Before dementia erases who we are, it shows us what we are – and who can say for certain where a person’s defences end and his dementia begins? On some level the distinction doesn’t exist; we create it.
Sadly, it is only when dementia truly overwhelms people, when they can no longer function and protect themselves, that we finally see the condition for what it is. One night, when Sam slept over, he looked up to find his father reaching for the phone.
“Who are you calling?” Sam asked.
“My son,” Mr Schecter replied.
“Oh?” said Sam. “Who am I?”
“You’re Sam,” his father said, impervious to the contradiction and chuckling at the silliness of the question.
For a moment, Sam seemed stunned. Then he walked over to his father and gently hung up the phone. At last, he realised that something was happening that had nothing to do with the dramas of family life. His father had travelled someplace where Sam could not follow, a departure that Sam had to accept if he was going to help his father (and himself) deal with the disease. From Sam’s expression, it was clear that he now acknowledged the chasm that had opened up between them. But the next day, when Mr Schecter went to the kitchen to rearrange the food in the fridge for the 100th time, the father-and-son skirmishing started up again.
As with most victims, Mr Schecter’s condition worsened in the evening (“sundowners syndrome”), and often he confused Sam with his uncle or with the doctor who had treated him in Siberia. During the day, however, his illness was more capable of deceiving people. I’m thinking of a Sunday afternoon in May when the three of us took a stroll around the neighbourhood. Since Mr Schecter had lived in the same building for some 45 years, many people greeted him warmly. “Everybody knows Mr Schecter,” Sam exclaimed cheerfully. On hearing this, his father stopped and said with a wistful smile, “Except Mr Schecter.” This rare, self-deprecating remark did more than just amuse Sam, it comforted him: he looked over at his father and smiled as if they were sharing a joke, as if they were sharing the same reality.
Such moments are seductive precisely because they make us think that dementia is just a phase, that its victims may one day be capable of commiserating with us about their affliction. So whenever I saw that Sam was being lulled by one of his father’s lucid events, I would tell him gently, “Hope is the enemy.”
Because of such moments, caregivers teeter between hope and despair. Unsure about the depth of the disease, they can’t gauge what their patients know or don’t know. Guidebooks use the term “ambiguous loss” when referring to the terrible day when the patient’s mind is truly gone, when he is physically present but psychologically absent. Yet the real ambiguity, it seems to me, precedes the final stage, when we don’t know how much is gone and consequently how much we’re supposed to grieve. These are the months, or more often the years, when caregivers live in perpetual crisis. Phones never stop ringing (because patients often feel abandoned) and questions are repeated (because answers can’t be retained) and no lost item is ever found (because moments after it’s located, loved ones start looking for it again). At this point, desperate caregivers are told, “Be patient, it gets better” – which is less a rallying cry than the bleak acknowledgment that one day the patient will no longer have the wherewithal to cause trouble.
Such is the deviousness of dementia: its ability to keep hope alive while its symptoms signify only futility. As long as his father seemed like himself, Sam could continue to argue with him. As long as they kept fighting and as long as Sam clung to that familiar futility, it felt as though nothing had changed.
Dementia itself is partially responsible for this. Although the disease clearly affects explicit memory (the ability to learn or recall events), it doesn’t completely expunge implicit memory (which is connected to the emotions). Though Mr Schecter’s explicit memory made him deny our frequent interactions, his implicit memory couldn’t entirely get rid of me. Indeed, he would obsess over my safety and practically cover me with kisses when I returned home after an outing.
What’s confusing to caregivers is not the absence of a memory system, but rather its fragmentation. It was the constant back-and-forth of his knowing and not knowing me, of resenting and appreciating me, that prompted my own oscillation between hope and hopelessness. After all, I was in a relationship with a human being, not a pile of broken memory circuits. So the contradictions I witnessed began to seem more and more like the normal defences of an old man who simply wanted it both ways: he wanted complete independence yet demanded constant attention.
One evening, perhaps seven or eight months into my stay, Mr Schecter decided to change the battery in the smoke detector, which was in the hall, near the ceiling. Ignoring my warnings, he retrieved a chair from the kitchen and put it under the alarm. When I tried to stop him, he retorted that he was “the boss” and knew what he was doing. Usually, when he tried to fix things, I would distract him. But on this occasion, I refused to pretend that he knew better. For just one minute, I needed him to understand that there was such a thing as objective reality. “Forget about the alarm,” I said firmly. “It’s too dangerous to stand on the chair.”
He waved me away and put a foot on the chair. Aggravated by his condescension, I felt an uncharacteristic urge to strip him of his delusions.
“You don’t know what you’re doing!” I shouted. “You haven’t been to work in over a year! You don’t do a damn thing alone!”
He paused, and I continued to berate him. My words both startled and amused him. “You are crazy,” he told me with the superior air one reserves for spoiled children. Perhaps I was crazy for a moment. His forgetfulness, along with his inconsistent and contradictory behaviour, were sapping my sense of reality. And now this 99-year-old man was about to climb on a chair and perhaps kill himself in the bargain – all because I didn’t matter. My self-righteousness meant nothing to him. It was too much, and I accused him of being impossibly stubborn, of being both needy and domineering, and finally, shamefully, I called him “a burden”. That stopped him. For a moment he glared at me and then shuffled off to his bedroom.
Appalled by what I’d done, I carried the chair back to the kitchen and collapsed on the linoleum floor. I was angry at him for the perpetual stress, the perverse logic, the incapacity to understand who I was and what I was doing for him. But mostly I was angry at myself for being cruel. As I sat sulking and reprimanding myself, he returned to the kitchen. He wanted a snack, but finding me on the floor, he stopped and broke into his wide, sweet smile. Then he noticed my tearful face and was dumbfounded and genuinely moved.
“Are you alright?” he asked. “Who should I punish for upsetting you?”
Why do we try so hard to keep people intact when we know they’re broken beyond repair? Human nature, it seems, also abhors a vacuum, even if it’s someone else’s. Apparently, I needed Mr Schecter’s memory more than he did. I needed him to know that I had acted reprehensibly, not necessarily because I deserved chastisement but because without his memory I was not accountable to him, and without such accountability I risked losing both empathy and purpose.
Memory and language are bundled together. So when memory disappears, the victims are not only diminished but also yanked out of the only context they have ever known. All they can do is fall back on language, and since language implicitly posits an intact memory, we’re fooled into thinking that people remember the words we utter. Even those who ought to know better – the caregivers who deal with dementia on a daily basis – often fail to remember that their patients forget. In this way, language instils hope and makes fools of us all.
Unable to sleep one night, I wondered how long Mr Schecter had before he lost his ability to speak. He was already struggling with English. Would Yiddish be next? What would happen when he could no longer coherently articulate his annoyance or anger? My mind turned to Samuel Beckett. In Waiting for Godot, language both protects us from absurdity and makes the absurdity possible. The play ripples with nonsensical dialogue, silly misunderstandings, pointless quibbles, inconsequential mutterings, illogical arguments, empty promises, and the occasional nod toward suicide. No other work of literature possesses the dark comedy, the misery, and the peculiar ratio of hope to hopelessness so characteristic of dementia. No wonder we resist the disease’s implications and perverse logic, for that way leads to nihilism and despair.
Our perseverance in the face of absurdity (where memory and language no longer serve us) keeps us from getting at the core of dementia. But since any sort of communication is by its very nature hopeful, we are brought up short by a paradox: language nullifies the very bleakness and meaninglessness it means to express. This, too, Beckett understood. Stick around dementia patients long enough, and his language begins to sound eerily familiar:
it will be I, it will be the silence, where I am, I don’t know,
I’ll never know, in the silence you don’t know, you must go on, I can’t go on, I’ll go on.
And we do go on, because decency requires it, because we cannot abandon those we love, and because the momentum of language, with its implicit hopes and promises, continues to carry us along.
All Rights Reserved for Dasha Kiper