It will end crappily though, I thought.

The typical patient with Parkinson’s becomes disabled after eight to 10 years, but this typical patient does not exist. Everyone is different. Six years after being diagnosed, I was still on the tennis court. Then everything went wrong. Within a few months I became a wavering wreck. Walking turned into stumbling and I was forced to shuffle along behind a frame.

The time had come for brain surgery, my neurologist declared, and I was admitted to a clinic in the north of the Netherlands “for observation”. It took me several days to get used to the other patients. There were seven of them: three men and four women. I watched their nonsensical tremors and how they moved, step by petty step, as they tried desperately to swerve the wheels of their walking frames in the right direction. They ate in silence. One of them, a grumpy farmer from the countryside, sat quietly urinating on the worn-out lift chair.

One patient, a man in his 70s with a sturdy head and a weathered gaze, sat opposite me during dinner. Crouched like a frightened bird, he ate his sauerkraut mash while keeping his mouth close to the plate and drooling. From time to time some of the food fell back from his fork or from his raw, red swollen lower lip. When his plate was half empty, a nurse mercifully fed him a few more bites. His chin sagged on to the plate, his gray beard dipping in the cold sauerkraut mash.

What was worse? The looming oblivion of dementia or the cruel physical failures that come with Parkinson’s disease? Was it better to be trapped in a confused mind, or have a lucid mind while being trapped in a rebellious body?

Over recent years, I had discussed these kinds of questions with a friend of mine named Joop. We met occasionally and talked about dying, as if we were discussing a long-term weather forecast. Joop suffered from Alzheimer’s and had started to forget the basics of daily life. What he did know was that he didn’t want to die the way his father did, in a nursing home. “I don’t want to end up chasing after the nurses,” he told me.

Even as we replace old hips or knees or organs with new ones, and even as average life expectancy continues to increase, our brains keep on ageing. Neurodegeneration is the price we pay for the intense human drive to deny that existence is finite. Sooner or later our brains start to falter, nerve cells break down, and we end up in a nursing home, chasing nurses, chasing shadows, chasing ourselves.

On our way home, it hit me that I would rather die than end up like that. For the first time, I seriously considered the possibility of one day voluntarily ending my life. After all, I thought, the Netherlands has the best-regulated voluntary euthanasia system in the world.

Until the 1950s, the historian James Kennedy has argued, the Netherlands was more conservative, more religious and less prosperous than most other European countries. Then everything changed, and this fearful nation turned into a pioneer. We became an open, liberal society that led the way on ethical issues. We tolerated drugs, legalised abortion, and our prostitutes paid taxes.

Where we had once been devout and Calvinist, in the 60s we entered a godforsaken era. Churches were turned into shops or apartments. By the end of the century, Christian political parties had lost their grip on power, and their dogmas no longer dictated matters of life and death. The nation had long debated the question of whether assisted death should, in certain cases, be legalised. And in 2001, the Dutch parliament voted to make the Netherlands the first nation in the world to legalise euthanasia. Central to the argument in favour of the new law was the right to self-determination. “My death is my own,” as the Dutch say.

Today, nine out of 10 Dutch citizens support the euthanasia law, which went into effect in April 2002. This law allows physicians to honour requests to assist a patient who wants to end their life, if there is “unbearable and hopeless suffering” with no hope of improvement. This means that a physician could, for example, prevent someone with lung cancer from dying choking in their own blood.

The debate did not cease once the law was passed. New groups of patients demanded an even more liberal interpretation of the same law. And after every verdict that broadened the criteria for euthanasia, another group of citizens campaigned for even more progressive legislation. With every new demand, the debate would fire up once again. Supporters see the expansion of the law as moral progress, while opponents predict that we are moving towards a society reminiscent of Nazi Germany, where we get rid of those deemed “useless”, such as the very elderly or those with severe mental illness.

Ifirst met Joop on a cold and rainy September day in 2012. He was in his 70s. A year after he was diagnosed with Alzheimer’s, Joop was still remarkably fit. But when he started telling me the story of his choir and their performances in nursing homes for the third time in 20 minutes, I realised dementia had already disrupted his short-term memory.

Even though Joop was unaware, in that moment at least, of how much his illness had already begun to eat away at his mind, he knew what was in store for him. He could not let go of the images he had seen in those nursing homes. He had decided that when the day eventually came that he could no longer live with Janny, the love of his life, he would rather die.

“How do you think that day will go?” I asked him. He imagined that it would almost be an ordinary day. His children and grandchildren would come to say goodbye. “And then the doctor will walk in and give me an injection,” he said.

That might have been somewhat naive. For some time, Janny and Joop had been looking for a doctor who would be willing to help him die at the time he had chosen: the day when Joop was no longer capable of living at home. The doctors they had spoken to had explained that until Joop’s suffering was unbearable, they could not perform euthanasia. But when Joop asked, “What will you do when my dementia is more severe and I’m incompetent?” the doctors explained that, at that stage, they could not perform euthanasia.

I don’t think Joop ever completely understood this catch-22. Dementia poses special problems for euthanasia cases. Under Dutch law, a doctor is allowed to help a person with severe dementia to die, if that patient had prepared an advance euthanasia directive back when they were still mentally competent. Joop had one of those. He assumed everything had been arranged. But it hadn’t.

Of the 10,000 Dutch patients with dementia who die each year, roughly half of them will have had an advance euthanasia directive. They believed a doctor would “help” them. After all, this was permitted by law, and it was their express wish. Their naive confidence is shared by four out of 10 Dutch adults, who are convinced that a doctor is bound by an advance directive. In fact, doctors are not obliged to do anything. Euthanasia may be legal, but it is not a right.

This is the catch-22. If your dementia is at such an early stage that you are mentally fit enough to decide that you want to die, then it is probably “too early” to want to die. You still have good years left. And yet, by the time your dementia has deteriorated to the point at which you wished (when your mind was intact) to die, you will no longer be allowed to die, as you are not mentally fit to make that decision. It is now “too late” to die.

It is a sad story. The right to die has been discussed for so long now in the Netherlands that we have come to believe we each have the right to die when we want. But when push comes to shove, the patient is not the one who decides on their euthanasia. It is the doctor who decides, and no one else. For the thousands of dementia patients who thought they would escape the worst of the disease, the Dutch euthanasia law is an utter failure. In 2017, there were 6,585 official cases of euthanasia in the Netherlands, the majority of them for cancer patients. By contrast, since 2012, only seven people with severe dementia died by euthanasia. Almost no one with dementia is able to die “on time” – that is, when they actually wanted to.

In 2008, when he was no longer able to write, the Flemish author Hugo Claus, who had several times been tipped to win the Nobel prize for literature, chose euthanasia. Claus was suffering from Alzheimer’s, but was mentally fit enough to make the decision to die. His decision was seen by many as “brave” but it was also strongly criticised, especially in Belgium, which had followed the Netherlands in legalising euthanasia but was still facing highly outspoken Catholic opposition that considered euthanasia a grave sin.

And yet the death of Claus helped bring about a shift. According to the sociologist Hugo van der Wedden, those with dementia were given a voice, and were listened to more often than before. The law itself didn’t change, but some doctors changed their interpretation of what constitutes unbearable suffering. The fear of future suffering was recognised by doctors as unbearable suffering itself and, as a result, some doctors are now more willing to provide euthanasia to people in the early stages of dementia.

Still, the catch-22 remains. The patient must still be deemed mentally fit to confirm that they want to die. If they linger too long, if they want to see one more spring with flowering apple trees, and subsequently slip into a deeper dementia, the opportunity for an early death will have passed. The only thing left will the long detour to the grave.

On a Monday evening in February 2016, 1.5 million Dutch viewers watched a woman named Hannie Goudriaan die on television. In the documentary, we see Hannie just before her euthanasia. At one point, someone asks her whether she truly realises what is about to happen.

“What do you mean?” she answers.

Does she know why the doctor is stopping by?

“Oh, I don’t know,” she says.

“You want to go, right?” asks her husband, Gerrit.

“I want, uhm, ready, well, just chop-chop.”

“Are you sure?” her husband asks.

“Yes.”

On screen, Hannie Goudriaan is a woman of advanced age with thin, short gray hair, a surprised look and thin, tightly closed lips.

“Don’t you feel sorry for me?” her husband asks as the euthanasia doctor sits down opposite his wife.

“Yes,” Hannie says. “That’s why, chop-chop.”

“It’s time, baby,” Gerrit says. “Be brave now. You have been so very brave for so long.”

He puts his arms around her, his head on her shoulder – as if he is looking for her to comfort him. Hannie lets it happen. Her husband holds her. From the drip needle attached to her left hand, a transparent tube is connected to the syringe that the doctor is holding. With his other hand he is holding two fingers of Hannie’s left hand. Then the doctor injects the fluid into the vein. “It’s horrible,” Hannie, 68, says, before she dies.

Hannie Goudriaan had known where things were headed. She had semantic dementia, a rare disease that slowly and inescapably takes a person’s language away. Years earlier she had written a will, which stated that she wanted to die as soon as she was no longer able to communicate properly. Her personal doctor considered her wish for a while, but felt he could not be certain that she wanted to die. He referred her to the End of Life clinic, established in 2012 by the NVVE, the Dutch Right to Die organisation. The clinic is where people can turn to when their doctor refuses to help them. However, the clinic does not guarantee that it will be able to grant a death wish. Its physicians will consider the same question, which is: can this be done within the law?

And yet many viewers were stunned by what they saw on TV. “This is murder with one-and-a-half million witnesses,” Victor Lamme, a professor in cognitive neuroscience, tweeted after having watched the documentary. A day later he repeated the raw accusation on De Wereld Draait Door, one of the most-watched primetime shows on Dutch television, while Verwer sat across from him and tried to explain that Lamme had only seen what he wanted to see.

One reason the public was shocked is that they had actually seen how a doctor had ended a woman’s life. It’s one thing to vent your opinion on a euthanasia law that remains vague or theoretical to you. Death entering your living room while you’re sipping your coffee is a different experience.

The documentary, which had aimed to show the reality of the End of Life Clinic, also revealed another truth. We are comfortable talking about our own deaths, but when it comes to the deaths of other people, we feel differently. As much as we don’t want to end up in a nursing home, lost and lonely, a mere shadow of the people we once were, we will maintain that grandfather “seems happy enough”, wandering through the hallways in his underwear.

Likewise, we value control over the end of our own lives, but cramp up when a loved one says she is “finished” with hers. “Isn’t it too soon?” we ask. When we’re the ones staying behind, death seems harder to accept. Apparently, the death of a loved one is far more frightening to us than our own mortality. As the German sociologist Norbert Elias once said: “Death is a problem for the living.”

One Sunday last year, I ask my wife to join me in the garden, underneath the old apple tree. Finally, we discuss what lies ahead of us. “Growing old together shouldn’t have been like this,” I say. “I am only half the man I used to be. I know. But you having to tie my shoelaces, push my wheelchair and maybe even feed me bites of sauerkraut mash … ”

“Don’t be silly,” my wife says. “I have always known that this could happen. Or the other way around. That you would have to push me.”

That’s when I show her the envelope holding my advance euthanasia directive. It’s not an easy thing. What once seemed a philosophical and political problem becomes absurdly different when you have to explain it to the one you’re leaving behind.

“I myself didn’t know for a long time.”

“Tell me,” she says.

“Daily inconveniences,” I say, “I am willing to bear. There is simply no getting away from that. The stupid suffering. I will slowly become disabled – but I think I can live with that. Perhaps I will get used to the jerking of my head, the pain at night, the leg that always wants to go in another direction, and the endless tapping of my fingers … maybe a nurse will have to give me sponge baths … good lord … as long as I’m able to read, I’m even willing to wear a diaper.”

I can see her thinking: you’re trying to play it cool. Have I already forgotten what that nursing home was like?

“I couldn’t care less about dignity and decorum – those were gone the moment I wet myself for the first time. But if I no longer know where I am, if I begin to disappear and become someone else, if I no longer recognise our children, then it’s time to close the book.”

The wind rises. The sweet smell of summer. She asks what it is that I want.

“I thought I knew. I thought I wanted to stay a step ahead, to die in the early stage of dementia. I just had to find the courage to ask.”

“But … ?”

“Then I changed my mind. This is not about my courage.”

She stares at me, sceptical, hesitant.

I try to explain that I’ve come to realise that my death is not a big deal to me. What do we know about death? Death is nothing. We will never have a clue about it. How could I possibly be afraid of it? There is no reason to be. Why are we so obsessed with the idea that we must stay in control? For whom?

“This isn’t about me,” I say. I take a deep breath. “My death is not my own. My death will only ever mean something to those I leave behind. And if I’m not terribly wrong, I won’t even know the half-death that severe dementia is supposed to be. Just let me go under, slowly drift off, past the point of nothingness, the point of no return.”

“There is not one doctor that will help you,” she says.

“No. A doctor will not do that.”

I tell my love that I’ve made up my mind. “I hope it never happens, but if the day should come that I lose my mind and the ability to convince the doctor of my wish to die, someone else will have to make the decision for me.”

“No, they don’t.”

“Then who?”

“The others. The ones who are left behind … ”

And then I explain to her, carefully searching for the right words, that I still believe in the right of self-determination. We didn’t ask to grow old, did we? But in our desire to maintain self-control – a tragic and lonely desire – we sometimes forget about the others. I understand now that no one dies alone, that there are always those left behind who have to deal with that. And that gives us the moral obligation to live on.

“The right to die,” I say, “must be the right to allow another person – not a doctor, but a loved one – to make the decision about the ending of your life. That is a very big deal. If only because it is forbidden by law. That law must be changed, and that will take many years.”

She finds it an impossible thought. How could anyone ask such a thing?

“You can say no.”

“And then what?”

“Then I’ll have to look for someone else. That is my only wish, that I am the one who decides who is to make the decision.”

That thought is just as painful and impossible as the one before.

I try to calm her down. “It will be your decision when I die, whatever that may be.”

“Well, if that’s your choice … ” she says. Blossoms drift softly on to her lap.

She will help me, she says. As she has always done. “No matter what,” she says. “I will take care of you until your last breath.”

Translated by Nephtalie Demei

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https://www.theguardian.com/news/2018/aug/10/my-death-is-not-my-own-the-limits-of-legal-euthanasia

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 Sacks referred 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.

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. 

“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: someonewas 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.

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.)

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’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.

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.

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:

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.

Illustrations by Damien Cuypers

• This is an edited version of an article that first appeared in the autumn edition of The American Scholar.

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https://www.theguardian.com/society/2015/oct/20/the-deviousness-of-dementia