On the way to visit my mother one recent rainy afternoon, I stopped in, after quite some constant prodding, to see my insurance salesman. He was pressing his efforts to sell me a long-term-care policy with a pitch about how much I'd save if I bought it now, before the rates were set to precipitously rise. I am, as my insurance man pointed out, a "sweet spot" candidate. Not only do I have the cash (though not enough to self-finance my decline) but a realistic view: like so many people in our 50s – in my experience almost everybody – I have a parent in an advanced stage of terminal breakdown.

I didn't need to be schooled in the realities of long-term care: the costs for my mother, who is 86 and who, for the past 18 months, has not been able to walk, talk or to address her most minimal needs and, to boot, is absent a short-term memory, come in at about $17,000 a month. And while her insurance hardly covers all of that, I'm certainly grateful she had the foresight to carry such a policy. (Although the carrier has never paid on time and all payments involve hours of being on hold with its invariably unhelpful helpline operators – and please fax them, don't email.) My three children deserve as much.

And yet, on the verge of writing the cheque, I backed up.

What I feel most intensely when I sit by my mother's bed is a crushing sense of guilt for keeping her alive. Who can accept such suffering – who can so conscientiously facilitate it?

"Why do we want to cure cancer? Why do we want everybody to stop smoking? For this?" wailed a friend of mine with two long-ailing and yet tenacious in-laws.

Age is one of the great modern adventures, a technological marvel – we're given several more youthful-ish decades if we take care of ourselves. Almost nobody, at least openly, sees this for its ultimate, dismaying, unintended consequence: by promoting longevity and technologically inhibiting death we have created a new biological status – a no-exit state that persists longer and longer, one that is nearly as remote from life as death, but which, unlike death, requires vast service – indentured servitude, really – and resources.

This is not anomalous; this is the norm.

The traditional exits, of a sudden heart attack, of dying in one's sleep, of unreasonably dropping dead in the street, of even a terminal illness, are now exotic ways of going. The longer you live the longer it will take to die. The better you have lived the worse you may die. The healthier you are – through careful diet, diligent exercise and attentive medical scrutiny – the harder it is to die. Part of the advance in life expectancy is that we have technologically inhibited the ultimate event. We have fought natural causes to almost a draw. If you eliminate smokers, drinkers, other substance abusers, the obese and the fatally ill, you are left with a rapidly growing demographic segment peculiarly resistant to death's appointment – though far, far, far from healthy.

Sometimes we comb my mother's hair in silly dos, or photograph her in funny hats – a gallows but helpful humour: contrary to the comedian's maxim, comedy is easy, dying hard. Better plan on two years minimum, my insurance agent says, of this stub period of life – and possibly much more.

From a young and healthy perspective, we tend to look at dementia as merely Alzheimer's – a cancer-like bullet, an unfortunate genetic fate, which, with luck, we'll avoid. In fact, Alzheimer's is just one form – not, as it happens, my mother's – of the ever-more-encompassing conditions of cognitive collapse that are the partners and the price of longevity.

"Old age," says one of Philip Roth's protagonists, "isn't a battle, it's a massacre." I'd add: it's a holocaust. Circumstances have conspired to rob the human person – a mass of humanity – of all hope and dignity and comfort.

When my mother's diaper is changed she makes noises of harrowing despair – for a time, before she lost all language, you could make out what she was saying, repeated over and over and over again: "It's a violation. It's a violation. It's a violation."

The numbing thing is that you see this all coming – you see it, but purposely and stubbornly don't see it.

As it started with my mother, it was already advanced for a college friend and close colleague. As an only child, he had less room to hide. I looked on with mild concern at his helplessness. I kept thinking my situation could never get as bad as his – he spoke actually, not comically, of murder. But we all catch up with each other. All train wrecks occur on a timeline.

For my mother, it began with her feet. Her complaint, which no doctor could put a useful name to or offer much respite from, was that she felt the skin on her feet was too tight. One evening, almost three years ago, getting into the shower, she caught her lagging foot on the rail of the shower door and went down into the tub. She lay there, shivering in the tepid water until morning, when her neighbour became alarmed. There is a precept here, which no doctor quite spells out: once it has begun, it has begun; decline follows decline; incident precedes incident. Here's the medical language: "A decrement in capacity occurs."

But we'll cope, of course. My mother's shower was equipped with special chairs (the furniture of ageing is its own horrid story), grab bars and easy-reach phones installed and I-can't-get-up beepers subscribed to. She actually learned how to fall (not falling not being an option). At the least sign of a tumble, she would sink almost elegantly to the ground, and then, not being able to get up, she'd beep the police, the affable police, who would come and hoist her to her feet, whereupon she'd fix them coffee and all would be sort of well.

And then a holiday – those unfailing barometers of family health. Thanksgiving 2009 was already a weird one. My wife and I had split up earlier in the year. The woman I was seeing – and had moved in with – was coming. My children were boycotting. It was my mother who was trying to be the strong and constant pillar. She insisted she could do the job. Her neighbour – a man who had been squiring her around for many years – would load the turkey, too heavy for my mother to lift, into the oven. My sister and I would arrive before the handful of other guests to do the finishes. All was in order when we got there – the potatoes boiled and ready to be mashed in one pot, the carrots roasted, the onion custard baked – all in order except that my mother had done these preparations a week before. Every pot yielded an alarming odour. What was worse was her lack of comprehension – and lack of alarm.

Plans, obviously, had to begin in earnest. Her three children conferred. An independent life goes into receivership – and you think: how did we miss all the failing indicators? My mother, like a rogue accountant, had been hiding much of the evidence: she could no longer tell time, nor count, nor keep track of dates.

Anyway, this is what assisted living is for, no? She was game – and relieved. The place was just a few blocks from where my sister, an artist, lives and works. The apartments were in the $8,000-a-month range, hers a pleasant one-bedroom apartment in a prewar building, full of amenities (terraces and hairdressers) and gradations of assistance. But it is important to understand – and there is no reason why one would – that assistance in an assisted-living facility, even as you increase it and pay more for it, is really not much more than kind words and attendance, opened doors, a bit of laundry and your medications delivered to you. If there is a need for real assistance of almost any kind that involves any sort of calibration of concern, of dealing with the real complications and existential issues of ageing people, then 911 is invariably called. This is quite a brilliant business model: all responsibility and liability is posthaste shifted to public emergency services and the healthcare system.

The rate of hospitalisation for all other age groups is declining or holding steady, but for people over 65 it's skyrocketed. Emergency rooms, the last stop for gangbangers and the rootless, at least in the television version, are really the land of the elderly, and their first step into the hospital system.

My mother went to the after-dinner movie – The African Queen, as I recall – one evening in May and then told someone she was short of breath. My sister got to the hospital first and called me to say I ought to come.

My mother's cardiologist, Dr Barbara Lipton, a peppy younger woman who, annoyingly, called my mom "Mom", had been for many years monitoring her for a condition called aortic stenosis – a narrowing of the aortic valve. The advice was do nothing until something had to be done. If it ever had to be done.

This was good advice insofar as she had lived with this condition uneventfully for 15 years. But now that she was showing symptoms that might suddenly kill her, why not operate and reach for another few good years? What's to lose? That was the sudden reasoning and scenario.

My siblings and I must take the blame here. It did not once occur to us to say: "You want to do major heart surgery on an 84-year-old woman showing progressive signs of dementia? What are you, nuts?"

This is not quite true: my brother expressed doubts, but since he was off in Maui, and therefore unable to appreciate the reality of, well, the reality of being near, we discounted his view. And my mother protested. Her wishes have always been properly expressed, volubly and in writing: she urgently did not want to end up where she ultimately has ended up. She had enough sense left to resist – sitting in the hospital writing panicky, beseeching, Herzog-like notes to anyone who might listen – but of course who listens to a woman who scribbles such notes?

The truth is you're so relieved that someone else has a plan, and that the professionals with the plan seem matter-of-fact and unconcerned, that you disregard even obvious fallacies of logic: that the choice is between life as it was before the operation and death, instead of between life after the operation and death.

Here's what the surgeon said, defending himself, in perfect Catch-22-ese, against the recriminations that followed the stark and dramatic postoperative decline in my mother's "quality-of-life baseline": "I visited your mom before the procedure and fully informed her of the risks of such a surgery to someone showing signs of dementia."

You fully informed my demented mom?

The operation absolutely repaired my mother's heart – "She can live for years," according to the surgeon (who we were never to see again) – but left us longing for her level of muddle before the valve job. Where before she had been gently sinking, now we were in freefall.

She was reduced to a terrified creature – losing language skills by the minute. "She certainly appears agitated," the psychiatrist sent to administer anti-psychotic drugs told me, "and so do you."

Six weeks later she was returned, a shadow being, to her assisted-living apartment.

Unmoored in time, she began to wander the halls and was returned on regular occasions to the emergency room: each return, each ambulance, each set of restraints, each catheter, dealt her another psychic blow.

And then we were evicted. I had been pleasantly surprised when my mother moved in that only a month-to-month lease was required. Now I learned why. Dying is a series of stops, of way stations, of signposts. Home. Assisted living. Nursing care. Hospice. You are always moving on.

But before we were evicted, there was the "event". The big one. We had reached, I gratefully believed, her end. Emergency medical services arrived, and once more we were back in the St Luke's emergency cubicles. My mother's "presentation" could not have seemed bleaker. The young resident was clearly appalled that we might have strayed outside the time frame for administering the drug that could slow the effects of what surely seemed to be a stroke. Of course they were yet game to try. But we held our ground: we elected to do nothing here (prompting much renewed scrutiny of the healthcare proxy). And please note the DNR [Do Not Resuscitate]. Hours passed. I left and came back. My sister left and came back. One of my mother's aides left and came back.

And then those words, which turn out, in some instances, not to be a relief at all: "She seems to be out of the woods." What? How?

She had not had a stroke. She'd had a massive seizure. The differences between which being not exactly clear. And if she had more seizures, which she likely would, this would kill her, an explanation and urgency that somehow resulted – "Did you agree to this?" I said to my sister. "I don't think I did, did you?" "I don't think so" – in my mother getting vast amounts of anti-seizure drugs, as well as being moved, once again, into more or less long-term hospital residence.

Coherence was completely gone. All that was left was a jumble of words and incredible anger. Oh yes, and here was the thing: the anti-seizure drugs were preventing further devastating and probably lethal seizures, but in themselves were frying her brain even more.

And also, within a few weeks of lying in bed and resisting this final cataclysm, what abilities she had to walk, what slow and shambling remnant of walking, were gone. This is where we were: immobile and incoherent. And filled with rage.

And so the first effort to talk directly about the elephant.

It happened in an interior room at the hospital, too small for much, and filled with cast-off furniture, into which fit her doctor, her neurologist, her social worker, and my sister and me. It seemed like the adult thing for us to do, to face up to where we were and to not make these people have to tiptoe around the obvious.

I thanked everybody for what they had done, and then said reasonably: "How do we get from here… to there?"

An awkward number of beats.

Neurologist (shifting in his chair): "I think we want to define here and there" – tossing it to the doctor.

Doctor: "Your mom is quite agitated. So we don't really know what her less-agitated state will be."

My sister: "What are the chances that she will come back to anything like where she was before the seizure?"

Social worker: "We always have to deal with a variety of possible outcomes."

Me: "Maybe you could outline the steps you think we might take."

Doctor: "Wait and see."

Neurologist: "Monitor."

Doctor: "Change the drugs we're using."

Me: "So… OK… where can you reasonably see this ending up?"

Neurologist: "We can help you look at the options."

Me: "The options?"

Social worker (to my sister): "Where she might live. We can go over several possibilities."

Me: "Live?"

It was my Maui brother who, with marked impatience, suggested that I obviously had no idea how the real world works. Such a conversation, treading on legal fine lines and professional practices, must be conducted in a strict code – keep saying, he advised, "quality of life".

A week later, same uncomfortable room:

Me: "Obviously we are concerned on a quality-of-life basis."

My sister: "She is completely transformed. Nothing is as it was. She's suffering so much."

Doctor: "The baseline has clearly dropped."

Neurologist: "The risk is that the levels of medication that the agitation might respond to could depress her breathing."

Me: "The agitation seems extreme enough to warrant going some distance, considering the quality-of-life issues. Even if that…"

Neurologist: "I'm not sure I would be com-fortable…"

Me (with a sudden brainstorm): "Or what happens if you just discontinue the drugs? Just cut them out."

Neurologist: "Cold turkey could precipitate a massive seizure."

Me: "And death?"

Neurologist: "And death. Possibly. Yes."

Me: "Is this an option?"

Neurologist: "You have to make that decision. We can't force her to take medication."

Me: "Hm."

Discontinuing the medication felt like both a solemn and giddy occasion. A week passed, and then the doctors began to report in a chipper way that she was doing well, all things considered. She had withstood the shock to the system. She was stable.

What do you do with your mom when she can't do anything – anything at all – for herself? This is not about how you address her needs but about where you put her. No, it is first about who or what facility will take her.

My sister assembled the list of potential nursing homes, special elder-need facilities and palliative-care centres in commutable distance. I grudgingly went along to the best after she'd eliminated the worst.

Finely tuned into my mother's profound fear of virtually all strange presences, touches and noises, and yet her need for constant attention and reassurance, my sister found fault with every place. Hospice was the best alternative. But while my mother was surely dying – with her doctors gladly willing to certify her in this regard – hospice, we so learned, was not for the certainly dying but the promptly dying.

It was Marion, my mother's aide, a woman of remarkable humour and constancy, who had shown up one day, sent by a random agency – and who has now been with my mother every day for almost 18 months, not a day missed – who suggested just "bringing her home". The best approximation of "home" when there is no family homestead seemed to be the studio apartment where she is now, a short walk from my sister's house.

My brother could only see this as a quagmire of cost and responsibility. My sister assured him, as the doctors were assuring us, that six months was a realistic outside framework. My brother did his own Google search. "Yes, yes, they're right: six months at this stage is what you can expect. But you know what they die from? They die from neglect! Neglect! There's no neglect here! It's unnatural!"

I signed the lease. "Who can believe it's been a year?" said Marion when I signed the lease for another year a few weeks ago.

My sister comes over every morning. She brings the groceries, plans the menu and has a daily routine for stretching my mother's limbs. I'm here a few times a week (for exactly 30 minutes – no more, no less). Her grandchildren, with an unalloyed combination of devotion and horror, come on a diligent basis. And we have our family events: holiday meals eaten around her bed. Her 84-year-old brother and his wife visit regularly, and so does her 89-year-old cousin and her daughter. She even has one friend left who still calls her every day (all the other friends fell away a long time ago), conducting an extremely one-sided conversation over the speaker phone.

The absurdity of where we are, here on death row, can only be missed by the people who have no experience with the true nature and far-flung extremes of quality of life.

A few weeks ago, my sister and I called a meeting with my mother's doctor. As others had fallen to the wayside, the head of gerontology at St Luke's, Dr Brenda Matti-Orozco, a patient, long-suffering woman, had stepped up to this job.

"It's been a year," I began, groping for what needed to be said: let's do this, close it down, end it, wanting to murder the euphemisms as much as my mom. "We've seen a series of incremental but marked declines."

My sister chimed in with some vivid details. The doctor seemed at first alarmed that we might be trying to foist my mother back on her and the hospital and relieved when we said, frankly, we planned never to return to a hospital. We just wanted to help her go where she's going. (Was that too much? Was that too specific?)

She does seem, the doctor allowed, to have entered another stage. (These half-life stages of death, such that you never reach it.)

"Perhaps more palliative care. This can ease her suffering, but the side effect can be to depress her functions. But maybe it is time to err on the side of ease."

Another advance of sorts in our grim descent: over uncertain weeks or months, her functions will depress even further in this ultimate, excruciating winding down.

"Your mom, like a lot of people, is what we call a dwindler," said the doctor.

The single greatest pressure on healthcare is the disproportionate resources devoted to the elderly; to not just the old, but to the old old, and yet no one says what all old children of old parents know: this is not just wrongheaded but steals the life from everyone involved.

And it seems all the more savage because there is such a simple fix: give us the right to make provisions for when we want to go. Give families the ability to make a fair case of enough being enough, of the end's, de facto, having come.

Not long after visiting my insurance man those few weeks ago, I sent an "eyes wide open" email to my children, all in their 20s, saying this was a decision, to buy long-term-care insurance or not, they should be in on: When push came to shove, my care would be their logistical and financial problem; they needed to think about what they wanted me to do and, too, what I wanted them to do. But none of them responded – I suppose it was that kind of email.

Anyway, after due consideration, I decided on my own that I plainly would never want what insurance buys.

Meanwhile, since, like my mother, I can't count on someone putting a pillow over my head, I'll be trying to work out the timing and details of a do-it-yourself exit strategy. As should we all.

Michael Wolff is the author of the Man Who Owns the News, a biography of Rupert Murdoch. This article originally appeared in a longer version in New York Magazine