{"id":128,"date":"2012-08-05T18:02:51","date_gmt":"2012-08-05T18:02:51","guid":{"rendered":"http:\/\/katybutler.com\/site\/?p=128"},"modified":"2018-12-10T19:39:52","modified_gmt":"2018-12-10T19:39:52","slug":"a-pacemaker-wrecks-a-familys-life","status":"publish","type":"post","link":"http:\/\/www.katybutler.com\/author\/articles\/a-pacemaker-wrecks-a-familys-life\/","title":{"rendered":"What Broke My Father’s Heart: How A Pacemaker Wrecked Our Family’s Life"},"content":{"rendered":"


\n2010 June 18<\/a>
\nBy Katy Butler<\/p>\n

ONE OCTOBER AFTERNOON THREE years ago while I was visiting my parents, my mother made a request I dreaded and longed to fulfill. She had just poured me a cup of Earl Grey from her Japanese iron teapot, shaped like a little pumpkin; outside, two cardinals splashed in the birdbath in the weak Connecticut sunlight. Her white hair was gathered at the nape of her neck, and her voice was low. \u201cPlease help me get Jeff\u2019s pacemaker turned off,\u201d she said, using my father\u2019s first name. I nodded, and my heart knocked. <\/p>\n

Upstairs, my 85-year-old father, Jeffrey, a retired Wesleyan University professor who suffered from dementia, lay napping in what was once their shared bedroom. Sewn into a hump of skin and muscle below his right clavicle was the pacemaker that helped his heart outlive his brain. The size of a pocket watch, it had kept his heart beating rhythmically for nearly five years. Its battery was expected to last five more.<\/p>\n

After tea, I knew, my mother would help him from his narrow bed with its mattress encased in waterproof plastic. She would take him to the toilet, change his diaper and lead him tottering to the couch, where he would sit mutely for hours, pretending to read Joyce Carol Oates, the book falling in his lap as he stared out the window.<\/p>\n

I don\u2019t like describing what dementia did to my father \u2014 and indirectly to my mother \u2014 without telling you first that my parents loved each other, and I loved them. That my mother, Valerie, could stain a deck and sew an evening dress from a photo in Vogue and thought of my father as her best friend. That my father had never given up easily on anything.<\/p>\n

Born in South Africa, he lost his left arm in World War II, but built floor-to-ceiling bookcases for our living room; earned a Ph.D. from Oxford; coached rugby; and with my two brothers as crew, sailed his beloved Rhodes 19 on Long Island Sound. When I was a child, he woke me, chortling, with his gloss on a verse from \u201cThe Rubaiyat of Omar Khayyam\u201d: \u201cAwake, my little one! Before life\u2019s liquor in its cup be dry!\u201d At bedtime he tucked me in, quoting \u201cHamlet\u201d : \u201cMay flights of angels sing thee to thy rest!\u201d<\/p>\n

Now I would look at him and think of Anton Chekhov, who died of tuberculosis in 1904. \u201cWhenever there is someone in a family who has long been ill, and hopelessly ill,\u201d he wrote, \u201cthere come painful moments when all timidly, secretly, at the bottom of their hearts long for his death.\u201d A century later, my mother and I had come to long for the machine in my father\u2019s chest to fail.<\/p>\n

Until 2001, my two brothers and I \u2014 all living in California \u2014 assumed that our parents would enjoy long, robust old ages capped by some brief, undefined final illness. Thanks to their own healthful habits and a panoply of medical advances \u2014 vaccines, antibiotics, airport defibrillators, 911 networks and the like \u2014 they weren\u2019t likely to die prematurely of the pneumonias, influenzas and heart attacks that decimated previous generations. They walked every day. My mother practiced yoga. My father was writing a history of his birthplace, a small South African town.<\/p>\n

In short, they were seemingly among the lucky ones for whom the American medical system, despite its fragmentation, inequity and waste, works quite well. Medicare and supplemental insurance paid for their specialists and their trusted Middletown internist, the lean, bespectacled Robert Fales, who, like them, was skeptical of medical overdoing. \u201cI bonded with your parents, and you don\u2019t bond with everybody,\u201d he once told me. \u201cIt\u2019s easier to understand someone if they just tell it like it is from their heart and their soul.\u201d<\/p>\n

They were also stoics and religious agnostics. They signed living wills and durable power-of-attorney documents for health care. My mother, who watched friends die slowly of cancer, had an underlined copy of the Hemlock Society\u2019s \u201cFinal Exit\u201d in her bookcase. Even so, I watched them lose control of their lives to a set of perverse financial incentives \u2014 for cardiologists, hospitals and especially the manufacturers of advanced medical devices \u2014 skewed to promote maximum treatment. At a point hard to precisely define, they stopped being beneficiaries of the war on sudden death and became its victims.<\/p>\n

Things took their first unexpected turn on Nov. 13, 2001, when my father \u2014 then 79, pacemakerless and seemingly healthy \u2014 collapsed on my parents\u2019 kitchen floor in Middletown, making burbling sounds. He had suffered a stroke.<\/p>\n

He came home six weeks later permanently incapable of completing a sentence. But as I\u2019ve said, he didn\u2019t give up easily, and he doggedly learned again how to fasten his belt; to peck out sentences on his computer; to walk alone, one foot dragging, to the university pool for water aerobics. He never again put on a shirt without help or looked at the book he had been writing. One day he haltingly told my mother, \u201cI don\u2019t know who I am anymore.\u201d<\/p>\n

His stroke devastated two lives. The day before, my mother was an upper-middle-class housewife who practiced calligraphy in her spare time. Afterward, she was one of tens of millions of people in America, most of them women, who help care for an older family member.<\/p>\n

Their numbers grow each day. Thanks to advanced medical technologies, elderly people now survive repeated health crises that once killed them, and so the \u201coldest old\u201d have become the nation\u2019s most rapidly growing age group. Nearly a third of Americans over 85 have dementia (a condition whose prevalence rises in direct relationship to longevity). Half need help with at least one practical, life-sustaining activity, like getting dressed or making breakfast. Even though a capable woman was hired to give my dad showers, my 77-year-old mother found herself on duty more than 80 hours a week. Her blood pressure rose and her weight fell. On a routine visit to Dr. Fales, she burst into tears. She was put on sleeping pills and antidepressants.<\/p>\n

My father said he came to believe that she would have been better off if he had died. \u201cShe\u2019d have weeped the weep of a widow,\u201d he told me in his garbled, poststroke speech, on a walk we took together in the fall of 2002. \u201cAnd then she would have been all right.\u201d It was hard to tell which of them was suffering more.<\/p>\n

As we shuffled through the fallen leaves that day, I thought of my father\u2019s father, Ernest Butler. He was 79 when he died in 1965, before pacemakers, implanted cardiac defibrillators, stents and replacement heart valves routinely staved off death among the very old. After completing some long-unfinished chairs, he cleaned his woodshop, had a heart attack and died two days later in a plain hospital bed. As I held my dad\u2019s soft, mottled hand, I vainly wished him a similar merciful death.<\/p>\n

A few days before Christmas that year, after a vigorous session of water exercises, my father developed a painful inguinal (intestinal) hernia. My mother took him to Fales, who sent them to a local surgeon, who sent them to a cardiologist for a preoperative clearance. After an electrocardiogram recorded my father\u2019s slow heartbeat \u2014 a longstanding and symptomless condition not uncommon in the very old \u2014 the cardiologist, John Rogan, refused to clear my dad for surgery unless he received a pacemaker.<\/p>\n

Without the device, Dr. Rogan told me later, my father could have died from cardiac arrest during surgery or perhaps within a few months. It was the second time Rogan had seen my father. The first time, about a year before, he recommended the device for the same slow heartbeat. That time, my then-competent and prestroke father expressed extreme reluctance, on the advice of Fales, who considered it overtreatment.<\/p>\n

My father\u2019s medical conservatism, I have since learned, is not unusual. According to an analysis by the Dartmouth Atlas medical-research group, patients are far more likely than their doctors to reject aggressive treatments when fully informed of pros, cons and alternatives \u2014 information, one study suggests, that nearly half of patients say they don\u2019t get. And although many doctors assume that people want to extend their lives, many do not. In a 1997 study in The Journal of the American Geriatrics Society, 30 percent of seriously ill people surveyed in a hospital said they would \u201crather die\u201d than live permanently in a nursing home. In a 2008 study in The Journal of the American College of Cardiology, 28 percent of patients with advanced heart failure said they would trade one day of excellent health for another two years in their current state.<\/p>\n

When Rogan suggested the pacemaker for the second time, my father was too stroke-damaged to discuss, and perhaps even to weigh, his trade\u00adoffs. The decision fell to my mother \u2014 anxious to relieve my father\u2019s pain, exhausted with caregiving, deferential to doctors and no expert on high-tech medicine. She said yes. One of the most important medical decisions of my father\u2019s life was over in minutes. Dr. Fales was notified by fax.<\/p>\n

Fales loved my parents, knew their suffering close at hand, continued to oppose a pacemaker and wasn\u2019t alarmed by death. If he had had the chance to sit down with my parents, he could have explained that the pacemaker\u2019s battery would last 10 years and asked whether my father wanted to live to be 89 in his nearly mute and dependent state. He could have discussed the option of using a temporary external pacemaker that, I later learned, could have seen my dad safely through surgery. But my mother never consulted Fales. And the system would have effectively penalized him if she had. Medicare would have paid him a standard office-visit rate of $54 for what would undoubtedly have been a long meeting \u2014 and nothing for phone calls to work out a plan with Rogan and the surgeon.<\/p>\n

Medicare has made minor improvements since then, and in the House version of the health care reform bill debated last year, much better payments for such conversations were included. But after the provision was distorted as reimbursement for \u201cdeath panels,\u201d it was dropped. In my father\u2019s case, there was only a brief informed-consent process, covering the boilerplate risks of minor surgery, handled by the general surgeon.<\/p>\n

I believe that my father\u2019s doctors did their best within a compartmentalized and time-pressured medical system. But in the absence of any other guiding hand, there is no doubt that economics helped shape the wider context in which doctors made decisions. Had we been at the Mayo Clinic \u2014 where doctors are salaried, medical records are electronically organized and care is coordinated by a single doctor \u2014 things might have turned out differently. But Middletown is part of the fee-for-service medical economy. Doctors peddle their wares on a piecework basis; communication among them is haphazard; thinking is often short term; nobody makes money when medical interventions are declined; and nobody is in charge except the marketplace.<\/p>\n

And so on Jan. 2, 2003, at Middlesex Hospital, the surgeon implanted my father\u2019s pacemaker using local anesthetic. Medicare paid him $461 and the hospital a flat fee of about $12,000, of which an estimated $7,500 went to St. Jude Medical, the maker of the device. The hernia was fixed a few days later.<\/p>\n

It was a case study in what primary-care doctors have long bemoaned: that Medicare rewards doctors far better for doing procedures than for assessing whether they should be done at all. The incentives for overtreatment continue, said Dr. Ted Epperly, the board chairman of the American Academy of Family Physicians, because those who profit from them \u2014 specialists, hospitals, drug companies and the medical-device manufacturers \u2014 spend money lobbying Congress and the public to keep it that way.<\/p>\n

Last year, doctors, hospitals, drug companies, medical-equipment manufacturers and other medical professionals spent $545 million on lobbying, according to the Center for Responsive Politics. This may help explain why researchers estimate that 20 to 30 percent of Medicare\u2019s $510 billion budget goes for unnecessary tests and treatment. Why cost-containment received short shrift in health care reform. Why physicians like Fales net an average of $173,000 a year, while noninvasive cardiologists like Rogan net about $419,000.<\/p>\n

The system rewarded nobody for saying \u201cno\u201d or even \u201cwait\u201d \u2014 not even my frugal, intelligent, Consumer-Reports-reading mother. Medicare and supplemental insurance covered almost every penny of my father\u2019s pacemaker. My mother was given more government-mandated consumer information when she bought a new Camry a year later.<\/p>\n

And so my father\u2019s electronically managed heart \u2014 now requiring frequent monitoring, paid by Medicare \u2014 became part of the $24 billion worldwide cardiac-device industry and an indirect subsidizer of the fiscal health of American hospitals. The profit margins that manufacturers earn on cardiac devices is close to 30 percent. Cardiac procedures and diagnostics generate about 20 percent of hospital revenues and 30 percent of profits.<\/p>\n

Shortly after New Year\u2019s 2003, my mother belatedly called and told me about the operations, which went off without a hitch. She didn\u2019t call earlier, she said, because she didn\u2019t want to worry me. My heart sank, but I said nothing. It is one thing to silently hope that your beloved father\u2019s heart might fail. It is another to actively abet his death.<\/p>\n

The pacemaker bought my parents two years of limbo, two of purgatory and two of hell. At first they soldiered on, with my father no better and no worse. My mother reread Jon Kabat-Zinn\u2019s \u201cFull Catastrophe Living,\u201d bought a self-help book on patience and rose each morning to meditate.<\/p>\n

In 2005, the age-related degeneration that had slowed my father\u2019s heart attacked his eyes, lungs, bladder and bowels. Clots as narrow as a single human hair lodged in tiny blood vessels in his brain, killing clusters of neurons by depriving them of oxygen. Long partly deaf, he began losing his sight to wet macular degeneration, requiring ocular injections that cost nearly $2,000 each. A few months later, he forgot his way home from the university pool. He grew incontinent. He was collapsing physically, like an ancient, shored-up house.<\/p>\n

In the summer of 2006, he fell in the driveway and suffered a brain hemorrhage. Not long afterward, he spent a full weekend compulsively brushing and rebrushing his teeth. \u201cThe Jeff I married . . . is no longer the same person,\u201d my mother wrote in the journal a social worker had suggested she keep. \u201cMy life is in ruins. This is horrible, and I have lasted for five years.\u201d His pacemaker kept on ticking.<\/p>\n

When bioethicists debate life-extending technologies, the effects on people like my mother rarely enter the calculus. But a 2007 Ohio State University study of the DNA of family caregivers of people with Alzheimer\u2019s disease showed that the ends of their chromosomes, called telomeres, had degraded enough to reflect a four-to-eight-year shortening of lifespan. By that reckoning, every year that the pacemaker gave my irreparably damaged father took from my then-vigorous mother an equal year.<\/p>\n

When my mother was upset, she meditated or cleaned house. When I was upset, I Googled. In 2006, I discovered that pacemakers could be deactivated without surgery. Nurses, doctors and even device salesmen had done so, usually at deathbeds. A white ceramic device, like a TV remote and shaped like the wands that children use to blow bubbles, could be placed around the hump on my father\u2019s chest. Press a few buttons and the electrical pulses that ran down the leads to his heart would slow until they were no longer effective. My father\u2019s heart, I learned, would probably not stop. It would just return to its old, slow rhythm. If he was lucky, he might suffer cardiac arrest and die within weeks, perhaps in his sleep. If he was unlucky, he might linger painfully for months while his lagging heart failed to suffuse his vital organs with sufficient oxygenated blood.<\/p>\n

If we did nothing, his pacemaker would not stop for years. Like the tireless charmed brooms in Disney\u2019s \u201cFantasia,\u201d it would prompt my father\u2019s heart to beat after he became too demented to speak, sit up or eat. It would keep his heart pulsing after he drew his last breath. If he was buried, it would send signals to his dead heart in the coffin. If he was cremated, it would have to be cut from his chest first, to prevent it from exploding and damaging the walls or hurting an attendant.<\/p>\n

On the Internet, I discovered that the pacemaker \u2014 somewhat like the ventilator, defibrillator and feeding tube \u2014 was first an exotic, stopgap device, used to carry a handful of patients through a brief medical crisis. Then it morphed into a battery-powered, implantable and routine treatment. When Medicare approved the pacemaker for reimbursement in 1966, the market exploded. Today pacemakers are implanted annually in more than 400,000 Americans, about 80 percent of whom are over 65. According to calculations by the Dartmouth Atlas research group using Medicare data, nearly a fifth of new recipients who receive pacemakers annually \u2014 76,000 \u2014 are over 80. The typical patient with a cardiac device today is an elderly person suffering from at least one other severe chronic illness.<\/p>\n

Over the years, as technology has improved, the battery life of these devices lengthened. The list of heart conditions for which they are recommended has grown. In 1984, the treatment guidelines from the American College of Cardiology declared that pacemakers were strongly recommended as \u201cindicated\u201d or mildly approved as \u201creasonable\u201d for 56 heart conditions and \u201cnot indicated\u201d for 31 more. By 2008, the list for which they were strongly or mildly recommended expanded to 88, with most of the increase in the lukewarm \u201creasonable\u201d category.<\/p>\n

The research backing the expansion of diagnoses was weak. Over all, only 5 percent of the positive recommendations were supported by research from multiple double-blind randomized studies, the gold standard of evidence-based medicine. And 58 percent were based on no studies at all, only a \u201cconsensus of expert opinion.\u201d Of the 17 cardiologists who wrote the 2008 guidelines, 11 received financing from cardiac-device makers or worked at institutions receiving it. Seven, due to the extent of their financial connections, were recused from voting on the guidelines they helped write.<\/p>\n

This pattern \u2014 a paucity of scientific support and a plethora of industry connections \u2014 holds across almost all cardiac treatments, according to the cardiologist Pierluigi Tricoci of Duke University\u2019s Clinical Research Institute. Last year in The Journal of the American Medical Association, Tricoci and his co-authors wrote that only 11 percent of 2,700 widely used cardiac-treatment guidelines were based on that gold standard. Most were based only on expert opinion.<\/p>\n

Experts are as vulnerable to conflicts of interest as researchers are, the authors warned, because \u201cexpert clinicians are also those who are likely to receive honoraria, speakers bureau [fees], consulting fees or research support from industry.\u201d They called the current cardiac-research agenda \u201cstrongly influenced by industry\u2019s natural desire to introduce new products.\u201d<\/p>\n

Perhaps it\u2019s no surprise that I also discovered others puzzling over cardiologists who recommended pacemakers for relatives with advanced dementia. \u201c78-year-old mother-in-law has dementia; severe short-term memory issues,\u201d read an Internet post by \u201csoninlaw\u201d on Elderhope.com, a caregivers\u2019 site, in 2007. \u201cOn a routine trip to her cardiologist, doctor decides she needs a pacemaker. . . . Anyone have a similar encounter?\u201d<\/p>\n

By the summer of 2007, my dad had forgotten the purpose of a dinner napkin and had to be coached to remove his slippers before he tried to put on his shoes. After a lifetime of promoting my father\u2019s health, my mother reversed course. On a routine visit, she asked Rogan to deactivate the pacemaker. \u201cIt was hard,\u201d she later told me. \u201cI was doing for Jeff what I would have wanted Jeff to do for me.\u201d Rogan soon made it clear he was morally opposed. \u201cIt would have been like putting a pillow over your father\u2019s head,\u201d he later told me.<\/p>\n

Not long afterward, my mother declined additional medical tests and refused to put my father on a new anti-dementia drug and a blood thinner with troublesome side effects. \u201cI take responsibility for whatever,\u201d she wrote in her journal that summer. \u201cEnough of all this overkill! It\u2019s killing me! Talk about quality of life \u2014 what about mine?\u201d<\/p>\n

Then came the autumn day when she asked for my help, and I said yes. I told myself that we were simply trying to undo a terrible medical mistake. I reminded myself that my dad had rejected a pacemaker when his faculties were intact. I imagined, as a bioethicist had suggested, having a 15-minute conversation with my independent, predementia father in which I saw him shaking his head in horror over any further extension of what was not a \u201clife,\u201d but a prolonged and attenuated dying. None of it helped. I knew that once he died, I would dream of him and miss his mute, loving smiles. I wanted to melt into the arms of the father I once had and ask him to handle this. Instead, I felt as if I were signing on as his executioner and that I had no choice.<\/p>\n

Over the next five months, my mother and I learned many things. We were told, by the Hemlock Society\u2019s successor, Compassion and Choices, that as my father\u2019s medical proxy, my mother had the legal right to ask for the withdrawal of any treatment and that the pacemaker was, in theory at least, a form of medical treatment. We learned that although my father\u2019s living will requested no life support if he were comatose or dying, it said nothing about dementia and did not define a pacemaker as life support. We learned that if we called 911, emergency medical technicians would not honor my father\u2019s do-not-resuscitate order unless he wore a state-issued orange hospital bracelet. We also learned that no cardiology association had given its members clear guidance on when, or whether, deactivating pacemakers was ethical.<\/p>\n

(Last month that changed. The Heart Rhythm Society and the American Heart Association issued guidelines declaring that patients or their legal surrogates have the moral and legal right to request the withdrawal of any medical treatment, including an implanted cardiac device. It said that deactivating a pacemaker was neither euthanasia nor assisted suicide, and that a doctor could not be compelled to do so in violation of his moral values. In such cases, it continued, doctors \u201ccannot abandon the patient but should involve a colleague who is willing to carry out the procedure.\u201d This came, of course, too late for us.)<\/p>\n

In the spring of 2008, things got even worse. My father took to roaring like a lion at his caregivers. At home in California, I searched the Internet for a sympathetic cardiologist and a caregiver to put my Dad to bed at night. My frayed mother began to shout at him, and their nighttime scenes were heartbreaking and frightening. An Alzheimer\u2019s Association support-group leader suggested that my brothers and I fly out together and institutionalize my father. This leader did not know my mother\u2019s formidable will and had never heard her speak about her wedding vows or her love.<\/p>\n

Meanwhile my father drifted into what nurses call \u201cthe dwindles\u201d: not sick enough to qualify for hospice care, but sick enough to never get better. He fell repeatedly at night and my mother could not pick him up. Finally, he was weak enough to qualify for palliative care, and a team of nurses and social workers visited the house. His chest grew wheezy. My mother did not request antibiotics. In mid-April 2008, he was taken by ambulance to Middlesex Hospital\u2019s hospice wing, suffering from pneumonia.<\/p>\n

Pneumonia was once called \u201cthe old man\u2019s friend\u201d for its promise of an easy death. That\u2019s not what I saw when I flew in. On morphine, unreachable, his eyes shut, my beloved father was breathing as hard and regularly as a machine.<\/p>\n

My mother sat holding his hand, weeping and begging for forgiveness for her impatience. She sat by him in agony. She beseeched his doctors and nurses to increase his morphine dose and to turn off the pacemaker. It was a weekend, and the doctor on call at Rogan\u2019s cardiology practice refused authorization, saying that my father \u201cmight die immediately.\u201d And so came five days of hard labor. My mother and I stayed by him in shifts, while his breathing became increasingly ragged and his feet slowly started to turn blue. I began drafting an appeal to the hospital ethics committee. My brothers flew in.<\/p>\n

On a Tuesday afternoon, with my mother at his side, my father stopped breathing. A hospice nurse hung a blue light on the outside of his hospital door. Inside his chest, his pacemaker was still quietly pulsing.<\/p>\n

After his memorial service in the Wesleyan University chapel, I carried a box from the crematory into the woods of an old convent where he and I often walked. It was late April, overcast and cold. By the side of a stream, I opened the box, scooped out a handful of ashes and threw them into the swirling water. There were some curious spiraled metal wires, perhaps the leads of his pacemaker, mixed with the white dust and pieces of bone.<\/p>\n

A year later, I took my mother to meet a heart surgeon in a windowless treatment room at Brigham and Women\u2019s Hospital in Boston. She was 84, with two leaking heart valves. Her cardiologist had recommended open-heart surgery, and I was hoping to find a less invasive approach. When the surgeon asked us why we were there, my mother said, \u201cTo ask questions.\u201d She was no longer a trusting and deferential patient. Like me, she no longer saw doctors \u2014 perhaps with the exception of Fales \u2014 as healers or her fiduciaries. They were now skilled technicians with their own agendas. But I couldn\u2019t help feeling that something precious \u2014 our old faith in a doctor\u2019s calling, perhaps, or in a healing that is more than a financial transaction or a reflexive fixing of broken parts \u2014 had been lost.<\/p>\n

The surgeon was forthright: without open-heart surgery, there was a 50-50 chance my mother would die within two years. If she survived the operation, she would probably live to be 90. And the risks? He shrugged. Months of recovery. A 5 percent chance of stroke. Some possibility, he acknowledged at my prompting, of postoperative cognitive decline. (More than half of heart-bypass patients suffer at least a 20 percent reduction in mental function.) My mother lifted her trouser leg to reveal an anklet of orange plastic: her do-not-resuscitate bracelet. The doctor recoiled. No, he would not operate with that bracelet in place. It would not be fair to his team. She would be revived if she collapsed. \u201cIf I have a stroke,\u201d my mother said, nearly in tears, \u201cI want you to let me go.\u201d What about a minor stroke, he said \u2014 a little weakness on one side?<\/p>\n

I kept my mouth shut. I was there to get her the information she needed and to support whatever decision she made. If she emerged from surgery intellectually damaged, I would bring her to a nursing home in California and try to care for her the way she had cared for my father at such cost to her own health. The thought terrified me.<\/p>\n

The doctor sent her up a floor for an echocardiogram. A half-hour later, my mother came back to the waiting room and put on her black coat. \u201cNo,\u201d she said brightly, with the clarity of purpose she had shown when she asked me to have the pacemaker deactivated. \u201cI will not do it.\u201d<\/p>\n

She spent the spring and summer arranging house repairs, thinning out my father\u2019s bookcases and throwing out the files he collected so lovingly for the book he never finished writing. She told someone that she didn\u2019t want to leave a mess for her kids. Her chest pain worsened, and her breathlessness grew severe. \u201cI\u2019m aching to garden,\u201d she wrote in her journal. \u201cBut so it goes. ACCEPT ACCEPT ACCEPT.\u201d<\/p>\n

Last August, she had a heart attack and returned home under hospice care. One evening a month later, another heart attack. One of my brothers followed her ambulance to the hospice wing where we had sat for days by my father\u2019s bed. The next morning, she took off her silver earrings and told the nurses she wanted to stop eating and drinking, that she wanted to die and never go home. Death came to her an hour later, while my brother was on the phone to me in California \u2014 almost as mercifully as it had come to my paternal grandfather. She was continent and lucid to her end.<\/p>\n

A week later, at the same crematory near Long Island Sound, my brothers and I watched through a plate-glass window as a cardboard box containing her body, dressed in a scarlet silk ao dai she had sewn herself, slid into the flames. The next day, the undertaker delivered a plastic box to the house where, for 45 of their 61 years together, my parents had loved and looked after each other, humanly and imperfectly. There were no bits of metal mixed with the fine white powder and the small pieces of her bones.
\n
\nKaty Butler lives in Mill Valley, Calif., and teaches memoir writing at the Esalen Institute in Big Sur.<\/em><\/p>\n

\u00a92010 Katy Butler. All Rights Reserved. Not to be reprinted without permission.<\/strong><\/p>\n","protected":false},"excerpt":{"rendered":"

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