Being Mortal

I wish every doctor in the world would read Atul Gawande’s Being Mortal, because it speaks so eloquently—and practically, as well—to a fundamental change in the way we live. It’s a change we owe partly to modern medicine: we not only live longer but we die slowly. It used to be, Gawande says, that the majority of deaths came without much warning—heart attacks, sudden infections, strokes, or even the sudden onslaught of cancer for which medicine had no healing response. (TB was the one great exception.) Now our mortality tends to a long, slow decline.

Medicine tries to beat back this trend, fighting for life, but not paying much attention to what will make our lives worthwhile day by day. Because medicine is so dedicated to resisting death, it does a terrible job acknowledging its inevitability; and because it focuses more on disease than on the human beings who are diseased, it is quite capable of making our lives worse. Caught up in the dramatic imperatives of the medical system, people get lost and end up with miserable existences.

Gawande, a Harvard surgeon who writes for The New Yorker, tells the stories of many patients, including his own father, who had to negotiate this journey without much help from their doctors and sometimes with the doctors’ actual interference. He also introduces us to medical professionals who have thought long and hard about these matters, and gives us hope that a long, slow, miserable death is far from inevitable. Something can be done to make it better.

Gawande is attracted to the holes in medicine—not to modern miracle stories of bizarre diseases and heroic science, but to medicine’s blind spots and failings. He has written extraordinarily well about why medicine costs so much, and about why there are so many medical errors (and what can be done about it). But in writing about mortality, he has landed on a subject with deeper, more fundamental implications.

“The problem with medicine and the institutions it has spawned for the care of the sick and the old is not that they have had an incorrect view of what makes life significant. The problem is that they have had almost no view at all. Medicine’s focus is narrow. Medical professionals concentrate on repair of health, not sustenance of the soul. Yet—and this is the painful paradox—we have decided that they should be the ones who largely define how we live in our waning days. For more than half a century now, we have treated the trials of sickness, aging and mortality as medical concerns. It’s been an experiment in social engineering, putting our fates in the hands of people valued more for their technical prowess than for their understanding of human needs.”

This social experiment has many sides, but perhaps the most pernicious is the loss of autonomy by the aging. Gawande quotes a colleague: “’We want autonomy for ourselves and safety for those we love.’ That remains the main problem and paradox for the frail. ‘Many of the things that we want for those we care about are things that we would adamantly oppose for ourselves because they would infringe upon our sense of self.’”

Gawande explores the institutions we have designed for the elderly and the chronically ill—nursing homes and assisted living facilities—and helps us see how, by eliminating autonomy in the name of safety and care, they often create an inhuman environment. He describes in detail how 911 and ICUs and heroic cancer-fighting tools may actually shorten life as well as make its end horrible and inhuman. But he does much more than identify the disease, he probes for a cure.

It is hard to imagine that Gawande is really a surgeon, given that he is so willing to admit his own failings as a doctor, his own ignorance of how to treat his desperately ill patients.

The result is a very moving book, one that often brought tears to my eyes. It also made me think long and hard about my own life and the lives of others, about the kinds of questions and responses I myself make to friends who are seriously ill or dying.

The Beginning of the End of the Beginning

The latest Atlantic Monthly has a cover story by Jonathan Rauch regarding midlife crises. He describes his own mid-40s time of frustration, and sums up the experience this way:

“Long ago, when I was 30 and he was 66, the late Donald Richie, the greatest writer I have known, told me: ‘Midlife crisis begins sometime in your 40s, when you look at your life and think, Is this all? And it ends about 10 years later, when you look at your life again and think, Actually, this is pretty good.’ In my 50s, thinking back, his words strike me as exactly right. To no one’s surprise as much as my own, I have begun to feel again the sense of adventure that I recall from my 20s and 30s. I wake up thinking about the day ahead rather than the five decades past. Gratitude has returned.”

That’s about right, at least for me. But life in my sixties has brought other realities.

In my fifties, a big recognition began that life has a definite horizon. That means that when you make a career choice, it might well be your last one. Is this my last book? Moving to a new place, or even redecorating the kitchen, bears something of that finality. The horizon is not endless. I cannot see exactly where it lies, but I know it is there, that I will reach it, that it is not an eternity distant as it seemed to be when I was young. This makes me more serious and reflective. I want to live my life well; it is my last chance.

What I’m discovering in my sixties is a very distinctive sense of—well, call it serenity. I have less drive, and a lot less ambition. I don’t care as much. I’m less easily distressed. I’m better able to wait on things: whether family issues, or lines in the grocery store. I’m more content to watch other people lead the way, even when I think they are mucking it up.

The flip side of this coin is a pervasive sense of loss. None of my closest friends is yet gone, but my parents (and Popie’s) are, along with most of their generation, some of whom I knew well. Some of my peers have died, and it’s quite clear that this is a trend.

I’m in good health, but I can’t help noticing physical loss. I don’t like to hike as far, I run more slowly, I wake up stiff or sore just from cooking dinner. In every way, I’m less physically vital—and this, too, is a trend.

This adds up to an internal sense of loss. In some ways, it’s just that I miss the drive I once had. I miss caring about my future. I miss ambition.

I live with an awareness that life is slowly leaking out of me.

So, I live with my internal thermostat set at 62. It’s a little cold, but it’s not so uncomfortable I want to get up and change it. I can pull a blanket up. I’m happy enough with my book. This can look and feel like serenity. Or, it can look and feel like mild depression.

And this, too, is surely a trend.

What am I to do with this reality? It’s not something I expect to rise above. It’s rather something I hope to inhabit in the best way possible. I’m still exploring what that means. I think some of these are involved:

–learning to number my days, so that I don’t let them flood past without noticing or appreciating.

–learning to pray.

–learning to love.

I value your thoughts.

Modern Proverb

I have a new saying…..

“It takes a village…. to remember a noun.”

If you don’t get this, it’s probably because you aren’t yet old enough.

Amour?

I can’t honestly urge anybody to see “Amour,” the French film that won the Oscar for best foreign film. It’s difficult to watch. If you want to see it–and it’s a fine movie–I’d encourage you to go with others who can talk it through afterwards. You can’t see “Amour” without thinking hard about your life.

The story is of two aging French music teachers. The wife, Anne, suffers a stroke. We watch as she declines in agonizing slow motion, and her husband Georges attempts to care for her. We see all the indignities, the terror and frustration. Nothing is romanticized; there are no compensations. These two clearly love each other, and the title, “Love,” is not ironic. But it’s not inspiring, either.

This kind of “amour” isn’t sweet or touching or motivating. This is love full of dread and duty.

That’s why you need people with whom to talk it through. The film presents the end of life for Georges and Anne the way they experience it: as a prison with no exit. But does it have to be that way? They see suicide as the only option. But there are actually many choices that they refuse.

They choose to be alone in their plight. They are not on terribly good terms with their daughter, who lives far away, but she wants to help, and offers to help. Georges rebuffs her.

He is reluctant to look for help, beyond a nurse who comes three times a week. Georges doesn’t get respite. He sees no one–no friends, no professional helpers. Hospice is not on board.

These two have built genteel, dignified lives. They love music. They inhabit a charming apartment full of their comforts. They have made it their castle. Facing terribly hard reality, they pull up the drawbridge.

You sense that all their lives they have cultivated independence, even from each other. Anne bristles against being cared for. She won’t listen to music, even a CD sent by one of her students, a successful pianist. The exigencies of care force Georges and Anne as close together as two humans can be, but there is little or no laughter in the way they embrace their indignities, only duty. And love. Genuine love.

But love is not enough. They need help, all kinds of help. They need community. Even with the best of help, what they go through is devastatingly hard. But hard is not the same as miserable. And they are fundamentally, abjectly miserable.

“Amour” pushes you to ask, “What would I do differently?” Lots of people have created charming, dignified lives that go well as long as they are healthy and have enough money. When they lose their health or their money, they may try to pull back into themselves, like a snail retreating into its shell. Georges and Anne do.  It’s just too undignified to admit people into their castle, to disturb their calculated life. They are stoics in the classical sense: their well-cultivated virtues will have to see them through.

It’s better to be undignified. It’s better to ask for help. It’s better to laugh and cry together. It’s better to be weak. It’s better to be dependent. It’s better to have friends. It’s better to rely on your family.

It’s still hard.

Life Review

I published As Our Years Increase 23 years ago, when both my parents and Popie’s parents were alive. My father-in-law, Henry Herrod, stimulated my writing by demanding to know how we planned to take care of him when he got old. I wasn’t altogether delighted to ponder that question, but I conceded he had a point. As Our Years Increase was my way of answering. It’s a research-based book about life after 65 and how families go through it together.

A year or so ago I decided to take some of my out-of-print books and turn them into ebooks. I thought some of them might still have something worthwhile to say. Today I’m announcing that my first one is up, available both through Amazon and through Smashwords (with Barnes and Noble and others to come) for $2.99.

I found it interesting to go through the book preparing to re-publish it. Each chapter begins with a memo to a parent or in-law, putting the subject in a very personal, family frame. That was a little tricky and theoretical when I wrote, as those issues weren’t yet “real” for us.

In the intervening years, they’ve become real. We’ve seen all our parents to the end of their lives. Henry died very suddenly from a heart attack. Lung cancer took my mother, one month after diagnosis. My father, who had been in long decline from Alzheimers, died four months after my mom. And last year my mother in law, Ozzie, died at least partly because of the trauma she experienced when the tornado hit her home in Tuscaloosa, Alabama. She was 93.

What I’d written theoretically so many years before all held up, I’m glad to say. Nothing proved foolish or fundamentally mistaken.

I think As Our Years Increase can still be helpful to people contemplating the dilemmas of aging. There’s practical advice gleaned from many sources, and there’s a lot of reflection on what old age is supposed to mean, in all its many phases. If this interests you, do take a look. At Smashwords you can preview the first 20% for free.

Wrapping Up Work

Yesterday afternoon I spent several hours with my friend Tom, who is dying from Parkinson’s disease. I had not seen him for a few days, and when I came into the room his appearance startled me. His body seemed to have shrunk to doll-size—he hasn’t eaten significantly in days—and his face was a mask, like a paper cutout. He didn’t communicate, though he seemed to make contact with us from eyes set deep in his head.

We entered the mystery of dying, into which the living can only peer from the outside. We held his hand, sang to him, and talked to him. We watched him and wondered what went on in his mind. But he was laboring at breathing, to the exclusion of everything else.

It takes a lot of work to die. The hospice social worker said to me that it seemed like the counterpart of labor pains, hard, long travail leading to a new kind of life.

I remember my mother, two days before she passed away, coming out to join the family at lunch. From her face you could see it cost her every ounce of strength. Ordinarily so gentle, she looked stern and forbidding from the sheer force of concentration. Walking from her bedroom with agonizing slowness, she joined us. Her loved ones were there; a new grandchild had come to visit. She still owed a debt to the living. She always paid her debts, whatever it cost her.

My father died of Alzheimer’s four months later, which meant that we had little real communication near the end. He had long since passed out of the realm of conscious contact. Earlier, though, I remember how he worked, as he sensed his mind disappearing.

He had a brilliant intellect, shooting like electricity from one interest to the next. All his adult life he devoured theology of a high intellectual order, but somewhere in mid-Alzheimer’s he lost the ability to think that way. He could no longer follow an argument. For a man like my father it was a great loss, but not so great as I had expected. For a long period of time, a year at least, he became enamored of a series of very simple devotional books. They would not have interested him earlier, but now he poured everything he had into reading and re-reading them. He went through entire books underlining every word.

His work went on, perhaps more than ever, as he felt his mental tools slipping away. He loved God. At that he kept working for as long as he could.

Making Plans for Elderly Parents

Here’s a tip for those who have elderly parents: hold your plans loosely.

You are going on a journey just a much as they are. It starts with a shock when you realize that mom or dad is no longer king of the world, but a person dependent on your and others’ care. Learning to negotiate the world of caregivers and elder institutions and the medical system takes time and energy that you never dreamed you were going to have to give. It’s not easy to figure out what’s needed, let alone how to provide it. Coordinating your efforts with your siblings and other friends and relatives can be quite trying.

If you are lucky, though, you get it figured out. Mom or dad settles into a new routine, with wonderful caring people to help. And you breathe a sigh of relief. You can go back to doing whatever you were doing when you were interrupted.

But it won’t last.

Looking back at my own father’s slow decline from Alzheimer’s, I remember multiple stops that were almost blissful. We were incredibly grateful when a Fijian man helped with dad’s daily shower, and gave my mom a break. Then came the Catholic respite care, which Dad loved to attend. Then we found the care home where lovely Filipino helpers treated dad gently and patiently.

But each of these steps—and lots of other smaller ones along the way—reached an end. They were great—until they weren’t.

When the system hiccups, you feel consternation. What is wrong with these people, this institution? We have to fix it! You think that, once having imposed equilibrium, you have a right to it.

Guess again. The norm has become change. Give thanks for the system that works, but be on the alert for its time of phasing out. The wonderful caregiver shows up late three mornings in a row because she has a grandchild in the hospital, and when you try to talk about it she quits. The assisted living home asks your parent to leave because he has fought with one of the other clients. Your mother falls and, after a stint in the hospital, must find new housing that provides skilled nursing care. Your father can’t renew his drivers’ license and suddenly cannot get groceries for himself. Your mother who has dedicated her life to nursing your father to the end is found on the floor of their apartment, exhausted and dehydrated.

What you learn is a lot like the lessons you learned raising toddlers. You respond to what’s happening now. It’s day by day, week by week, month by month. You don’t project too much into the future. You are amazed and thankful for the way that God brings the right people and programs into your life, just when you are most hopeless and desperate. It will work out. How, you are never quite sure.

After you’ve been through this a time or two, you are amazed at how much denial there is in the world—and used to be in yours. Aging and death are utterly predictable. But when they show up at our door they surprise us every time, and we spend quite a bit of time and energy pretending they haven’t come to stay.