Bem Sex Role Inventory<\/a> in 1974, which assesses a person\u2019s traits along a traditional gender continuum; led Cornell\u2019s fledgling women\u2019s studies program from 1978 to 1985; wrote a groundbreaking book, \u201cThe Lenses of Gender,\u201d in 1993; published a memoir, \u201cAn Unconventional Family,\u201d in 1998; became a licensed psychotherapist in 2000; and returned for a second term as the director of Cornell\u2019s renamed feminist, gender and sexuality studies program in 2001. Friends and colleagues knew Sandy to be intensely observant, a person who spoke her mind with a bluntness that could be off-\u00adputting. Her best friend, Karen Gilovich, a psychotherapist who lived around the corner, said that one of Sandy\u2019s favorite conversational openers was: \u201cI find myself thinking .\u2009.\u2009. .\u201d You never knew what would follow. She once wondered aloud, for instance, where the line was between acceptable and unacceptable behavior between parents and their children. Would it automatically be wrong for a waitress who comes home exhausted to ask her young son to rub her feet? Massage her back? Cuddle her? \u201cShe was the most clear thinker I have ever seen,\u201d Karen said, \u201cwith the ability to cut to the core of any messy issue.\u201d<\/p>\nOn June 22, her 65th birthday, Sandy returned to the University of Rochester for another three-\u00adhour consultation. This time it was with a senior neurologist, Charles Duffy, to evaluate not only her cognitive abilities but also her mood and functional status. At one point, Sandy told Duffy she didn\u2019t intend to live out her life with dementia. \u201cI want to live only for as long as I continue to be myself,\u201d she said.<\/p>\n
To her surprise, Duffy began to reminisce about his own life. His mother had had Alzheimer\u2019s, he said, and his time nurturing her through her decline profoundly shaped him as a physician, as a researcher and as a man. He said that Sandy \u2014 who had spent her career examining and describing her own life with frank insight and clarity \u2014 might have a lot to contribute to the world just by experiencing her disease and giving others a glimpse of how it felt to have it.<\/p>\n
Sandy was touched by Duffy\u2019s empathy and by his willingness to reveal the private details of his life. Others had stories like his, about people who watch their loved ones slip away, or people who go through that slipping \u00adaway themselves, and are surprised to find a kind of grace in it: the Zen-\u00adlike existence in an eternal now, the softening of hard edges, the glorification of simple pleasures. But Sandy knew that wasn\u2019t right for her. Not for a moment was she swayed by Duffy\u2019s arguments.<\/p>\n
Over the next several weeks, Sandy told those closest to her about her diagnosis and her plan to end her life before she became incapable of doing so. She told her two adult children, Emily and Jeremy, both in their 30s, and a handful of others: Karen; Daryl\u2019s sister, Robyn Bem; and Sandy\u2019s sister, Bev Lipsitz, who lived in Oregon. No one in that inner circle tried to talk her out of suicide; they knew how fierce she could be once her mind was made up. All they asked was that she promise not to choose a method that would be particularly disturbing \u2014 using a gun or jumping off a bridge into one of Ithaca\u2019s famously beautiful gorges. Sandy had contemplated both of those options, but she didn\u2019t want that sort of death either. \u201cWhat I want,\u201d she typed in her journal in an emphatic boldface font, \u201cis to die on my own timetable and in my own nonviolent way.\u201d<\/p>\n
But when would that be? Sandy knew that the Alzheimer\u2019s decline itself was predictable \u2014 it usually moves from mild (misplacing things, repeating questions) to moderate (being unable to learn something new, getting lost, failing to recognize loved ones) to severe (losing the ability to speak, swallow or remain continent; needing help with every function of day-\u00adto-\u00adday life). In the immediate aftermath of a diagnosis of amnestic M.C.I., however, she couldn\u2019t know how long each stage might last. She wanted to squeeze in as much intellectual and emotional joy as she could before she died, but she wanted to make sure she didn\u2019t wait too long. She needed to be engaged enough in her life to be able to end it.<\/p>\n
In early July, Daryl drove Sandy back to Rochester to see Duffy. The doctor suggested that she start on Namenda, one of the few drugs approved by the F.D.A. to treat Alzheimer\u2019s. Namenda works by increasing the level of glutamate in the brain and is thought to interfere with cell death. Researchers say that by the time someone exhibits mild cognitive impairment, the brain has been degenerating for years, and the drugs, even if they can slow the decline, are too little too late. But doctors and patients hope that starting a drug soon after diagnosis might make a slight but tangible difference \u2014 slowing memory loss enough to forestall total dependence. Sandy quickly agreed, which surprised Daryl, because she usually avoided medication, other than a low dose of Prozac that she had been taking for years for depression.<\/p>\n
That summer, Daryl began taking her to most of her doctors\u2019 appointments. Sandy could have done the driving herself, but it was good to have Daryl along, so he could recount each visit\u2019s details on the ride home as Sandy took painstaking notes. Besides, she was enjoying Daryl\u2019s company. Something about her diagnosis had opened up an emotional vein in him.<\/p>\n
\u201cWho is this wondrous Daryl?\u201d she wrote in her journal that month, after a drive in which Daryl talked with unexpected empathy about Sandy\u2019s early years with a harsh and mercurial mother. She loved the tender, attentive husband who seemed to have emerged from the ruins of her diagnosis. \u201cIf some devil had asked whether I would be willing to buy Daryl\u2019s deeper self at the cost of my developing dementia,\u201d she wrote, \u201cI would say NO without hesitation. But it if comes free with my unstoppable decline into hell, I\u2019m thankful for the gift.\u201d<\/p>\n
It was a bit like the earliest days of their relationship, back in 1965, when they met at Carnegie Tech in Pittsburgh. She was a senior psychology major; he was a new assistant professor of psychology. Just four months after being introduced by Sandy\u2019s roommate, they married.<\/p>\n
They vowed at the time to share everything 50-\u00ad50: the housework, the child-rearing, the inevitable career compromises. For a while, this worked well. So well, in fact, that in 1972 they were featured in the inaugural issue of Ms. magazine, in an article titled \u201cA Marriage of Equals.\u201d<\/p>\n
The Bems were both psychology professors, at Stanford and then Cornell, and they traveled around the country giving tandem talks about society\u2019s creation of sex-\u00adrole stereotypes. They were a slightly odd couple. Sandy was petite and not the least interested in fashion. Daryl was bigger, dapper, six years older and already a bit stooped, with a scholar\u2019s pallor, a kind face and a courtly manner cultivated over his years of performing as a magician. (He would also come to be known, later in his career, for some controversial experiments involving ESP.)<\/p>\n
They turned their politics into a way of life, raising their two children, Emily, born in 1974, and Jeremy, born two years later, in what they described as a gender-\u00adneutral way. \u201cMany other feminist couples have experimented with egalitarian relationships and feminist child-rearing,\u201d Sandy wrote in \u201cAn Unconventional Family.\u201d But few \u201chave shared the details of their daily lives as exuberantly as Daryl and I.\u201d She talked about everything, in print and on the lecture circuit: letting Jeremy wear pink barrettes to kindergarten; driving Emily past the same construction site every day because a woman was on the crew; hanging a chart on a kitchen cabinet to let the children know which parent was \u201con duty\u201d that week.<\/p>\n
Despite their good intentions, though, the marriage grew strained. As their children went through adolescence, Sandy complained that she felt like a single parent, with Daryl not fully engaging with the family\u2019s needs. They both saw the paradox in their supposedly egalitarian marriage floundering in such a gender-\u00adstereotypical way. In 1994, when the children were 19 and 17, the Bems separated.<\/p>\n
After the split, Daryl acted on his attraction to men, a part of his sexuality that he never hid from Sandy. He liked to joke that on their first date, he told her there were three things she should know about him \u2014 \u201cI\u2019m a stage magician, I\u2019m from Colorado and I\u2019m primarily homoerotic\u201d \u2014 and that she calmly replied that she had never met anyone from Colorado.<\/p>\n
About a year after the separation, Daryl began a long-\u00adterm relationship with a communications professor at Ithaca College. Yet he and Sandy never divorced, and he remained a frequent visitor to the big house in Cornell Heights where they raised their children. He ate dinner there a few times a week and stayed involved in the lives of Emily and Jeremy \u2014 even more involved, in a way, than when he lived with them. He also remained one of Sandy\u2019s best friends and one of her few close confidants. (She had a short-\u00adlived relationship with a woman soon after Daryl moved out and remained single after that.) Daryl wrote in the epilogue to \u201cAn Unconventional Family,\u201d which was published four years after they separated, \u201cSandy and I are still kin.\u201d<\/p>\n
On a quiet Friday morning in November 2010, Sandy sat down with a mug of honey-\u00adginger tea to read two books that Daryl had brought her. By this point, a year and a half after her amnestic M.C.I. diagnosis, she had progressed to what Duffy said was Alzheimer\u2019s disease. She had retired from Cornell, but she was doing well. She could still travel alone to familiar destinations, including Austin, Tex., where Emily was living. Jeremy had temporarily moved back home to be with her. She could read novels, even difficult ones like Cormac McCarthy\u2019s \u201cThe Road.\u201d She played tennis, gardened and went for walks around Ithaca with a handful of friends, most of them former colleagues from Cornell. She saw a few psychotherapy patients. One would later say that even though Sandy was having some trouble remembering words, \u201cit didn\u2019t really matter. In a therapy relationship you\u2019re talking more about emotions \u2014 and in that regard, she didn\u2019t miss a beat.\u201d<\/p>\n
The first book on her table that Friday morning was \u201cFinal Exit.\u201d Sandy read it in the early 1990s when it was published; even then she was intrigued by the argument of the author, Derek Humphry, in favor of self-\u00addirected \u201cdeath with dignity\u201d for people who were terminally ill. The second was a newer book by the Australian right-\u00adto-\u00addie advocate Philip Nitschke called \u201cThe Peaceful Pill Handbook.\u201d The pill in the title (though not literally a pill; it comes in liquid form) was Nembutal, a brand name for pentobarbital, a barbiturate that is used by veterinarians to euthanize animals and that is also used in state-\u00adsanctioned physician-\u00adassisted suicides. After reading about it, Sandy thought pentobarbital was what she was looking for. It was reliable, fast-\u00adacting and \u2014 most important to her \u2014 a gentle way to die. It causes swift but not sudden unconsciousness and then a gradual slowing of the heart.<\/p>\n
There could be complications, of course, like vomiting; Nitschke and his co-\u00adauthor, Fiona Stewart, recommended taking an anti-nausea drug a few hours before taking the fatal dose to minimize that risk. They warned that pentobarbital is detectable in a person\u2019s body after death \u2014 but that didn\u2019t matter to Sandy. In fact, she preferred having people know that she died by her own hand.<\/p>\n
One morning during one of Sandy\u2019s frequent phone calls to her sister in Oregon, she told her about the decision to use pentobarbital. Sandy had a special relationship with Bev, who was six years younger. When Sandy married Daryl, Bev was 14, and Sandy invited her sister to live with them rather than with their parents, whose unhappy marriage made it feel, as Sandy put it in her memoir, as if \u201cchaos could erupt at any moment.\u201d<\/p>\n
A year before Sandy received her diagnosis, Bev was found to have Stage 4 ovarian cancer. The sisters had discussed the fact that Oregon law allows people with terminal illnesses to take their own lives. Sandy now envied Bev\u2019s situation. \u201cI don\u2019t think I have ever been as jealous about anything in my life as I am about this,\u201d she wrote in her journal shortly after she saw Mapstone. It was weeks before she could get past that jealousy and take Bev into her confidence.<\/p>\n
But even if Sandy had lived in Oregon, her Alzheimer\u2019s disease would have precluded her from getting help in taking her own life. States that allow for assisted dying require two doctors to certify that the person has a prognosis of less than six months to live, and most people with Alzheimer\u2019s have no such prognosis. They also require that the person be declared \u201cof sound mind,\u201d a difficult hurdle for someone whose brain is deteriorating.<\/p>\n
On the phone that day, Sandy told Bev that pentobarbital was a controlled substance in the United States. She would have to write to one of the foreign suppliers listed in the book and hope for the best. Bev suggested an alternative: When the time came, she could request the drug from her own doctors in Oregon and then give it to Sandy. She didn\u2019t think she would need it herself \u2014 her cancer seemed to be in remission, and all she really cared about was eventually dying without pain. Like almost everyone else in Sandy\u2019s inner circle, Bev was devastated by the prospect of her sister\u2019s decline and death, but she tried to tune out her own anticipatory grief so she could focus on helping Sandy die the way she wanted to.<\/p>\n
On Dec. 9, 2012, Sandy\u2019s daughter, Emily, and her partner, Julius Viksne, had a baby boy, whom they named Felix. Sandy went down to Austin, still able to make the familiar trip on her own. During the previous two years, her life had become more limited, but she continued to enjoy it. She spent time during Ithaca\u2019s abbreviated growing season gardening in her backyard, either alone or in the company of Karen or Daryl\u2019s sister, Robyn. Although she had abandoned writing in her journal, she could still read novels on her iPad, but nothing quite as complex as \u201cThe Road\u201d anymore. She managed her day-to-day needs in part because she was such a creature of habit. She ate almost the same thing every day: a bagel for breakfast, a sandwich for lunch, a piece of salmon for dinner, mugs and mugs of tea throughout the day. Her freezer was always stuffed with 10-pound bags of almonds, so she could roast them by the handful and sprinkle a few onto chocolate frozen yogurt for her nightly treat. By then, she was also taking a second F.D.A.-\u00adapproved drug, Aricept, which inhibits the chemicals that break down acetylcholine, a neurotransmitter linked to short-term memory; people with Alzheimer\u2019s often have lower concentrations of acetylcholine in their brains. Daryl wasn\u2019t sure that either drug was making a difference. It was impossible to tell without knowing what Sandy would have been like without them.<\/p>\n
Becoming a grandmother was never something Sandy had cared much about. But when Felix was born, she was thrilled. He was in the neonatal intensive-care unit when she arrived in Austin; doctors had detected a bacterial infection in his urine and were administering antibiotics. Sandy sat in a rocking chair alongside the bassinet, and Emily handed the infant to her, naked except for his diaper, the IV port in his tiny hand capped off until the next infusion. She gazed down at her grandson, placid and perfect. She cooed and babbled. For weeks afterward, she talked about those first moments holding Felix. \u201cI don\u2019t know what I was saying or what I was doing,\u201d she would say. \u201cBut he just looked into my eyes.\u201d<\/p>\n
Emily was surprised to see her mother so at ease in the traditional role of Felix\u2019s bubbe (Yiddish for \u201cgrandmother\u201d). As a parent in the 1970s, Sandy turned every interaction with her children into a political act. During story time, she would go through their picture books with a bottle of Wite-\u00adOut and a Magic Marker, changing a hero\u2019s name from male to female, revising plot lines, adding long hair or breasts to some of the drawings. Story time was a different experience with Felix. Sandy would cuddle with the baby and turn pages. If she couldn\u2019t remember the word for \u201czebra\u201d or \u201clion,\u201d she wouldn\u2019t fuss about it. \u201cOh, it\u2019s some animal,\u201d she would say.<\/p>\n
She told Emily that her \u201cnew brain\u201d might actually make her better suited to being a grandmother than her focused, hyper\u00adanalytical \u201cold brain.\u201d She seemed to have found a way of being that she liked, content to sing silly songs and make nonsense sounds for hours on end.<\/p>\n
Emily liked her mother this way, too. It had sometimes been difficult to be Sandy\u2019s daughter. As a child, Emily wanted to wear her hair long and take ballet lessons; Sandy, ever vigilant about gender stereotypes, nudged her to cut her hair and play soccer instead. But now Sandy didn\u2019t seem to care about such things. Emily thought that her mother was taking pleasure in life in a way that the old Sandy could not have anticipated \u2014 and she found herself hoping that the joy her mother took in Felix might make her reconsider her intention to end her life quite so soon.<\/p>\n
The others in Sandy\u2019s inner circle saw her relationship with Felix and wondered what it would mean for her original plan. The old Sandy, who valued her rationality and her agency, had been clear that she would be unwilling to keep living when she could no longer articulate coherent thoughts. But this newer Sandy didn\u2019t seem unhappy living her life in this compromised way. Ultimately, who should make the decision to die, the old Sandy or the new one?<\/p>\n
Ronald Dworkin, an influential legal scholar and the author of \u201cLife\u2019s Dominion: An Argument About Abortion, Euthanasia and Individual Freedom,\u201d wrote about a kind of hierarchy of needs for people in Sandy\u2019s situation, who want their autonomy to be respected even as disease changes the essence of who they are and what autonomy means. He differentiated between \u201ccritical interests\u201d (personal goals and desires that make life worth living) and \u201cexperiential interests\u201d (enjoying listening to music, for instance, or eating chocolate ice cream). Sandy was appreciating her experiential interests \u2014 playing with Felix and working in her garden \u2014 but her critical interests were far more sophisticated and were moving out of her reach. Critical interests should take priority when making end-\u00adof-\u00adlife choices on behalf of someone whose changed state renders her less capable of deciding on her own, Dworkin wrote, because critical interests reflect your true identity. The new Sandy seemed to love being a grandmother, but it was important to take into account what the old Sandy would have wanted.<\/p>\n
Granting priority to critical interests is difficult even in a society that tries to do so. In the Netherlands, the Termination of Life on Request and Assisted Suicide Act makes it possible for a doctor to end a person\u2019s life when she is not cognitively able to do it herself, as long as she laid out her intention while she was still competent. According to the 2002 law, if someone with Alzheimer\u2019s disease has an advance directive declaring her wish to die when her dementia reaches a point she considers intolerable \u2014 when she has to be spoon-\u00adfed, for example, or put in diapers \u2014 that document is sufficient to allow a doctor to perform euthanasia. Nevertheless, it is rare for a doctor in the Netherlands to actually euthanize a patient who has dementia. In fact, one recent survey of 110 Dutch physicians treating dementia patients with advance directives asking to be euthanized found not a single one who had carried out the request. And of the 4,829 people who died in 2013 under the Dutch euthanasia act, just 97 of them, or 2 percent, had dementia.<\/p>\n
\u201cYou know I plan to kill myself,\u201d Sandy said all through 2013, whenever the thought occurred to her. She seemed to say it partly for the sake of others, so they could get used to the idea and steel themselves against pain and grief when the time came. But it seemed that it was also for her own sake, to keep her plan at the forefront of her disintegrating mind. Emily and Felix were living with Sandy at the time, so that Sandy could help with child care while Julius attended nursing school in Colorado. (Jeremy had recently moved out. He was going through a rocky time and was not communicating with the family, though he supported his mother\u2019s plans.) It drove Emily crazy to hear her mother continually bring up suicide. \u201cStop saying that!\u201d she would tell her.<\/p>\n
One night in August 2013, when Sandy was home alone, she pulled out a yellow legal pad and sat down at the tile-\u00adtopped table in her big, oak-\u00adtrimmed kitchen, where she had eaten thousands of dinners. She had just heard of two experimental treatments for Alzheimer\u2019s that she hoped might, in addition to the Namenda and Aricept, keep her functioning so that she could help care for Felix until August 2014, when Julius was scheduled to finish his nursing program and move back home. But the drugs were prohibitively expensive, and she would have to pay for them out of pocket, because her insurance wouldn\u2019t cover the cost. On the pad, she started to make calculations. The treatment \u2014 a combination of IVIG (intravenous immunoglobulin), a drug approved for other neurodegenerative diseases, and repetitive TMS (transcranial magnetic stimulation), which was usually prescribed for depression \u2014 cost $6,000 every two weeks at the New York Memory and Healthy Aging Services. What if she could persuade the center to charge less, because at her size she would need less medication? And what if she received the treatment less frequently, maybe every three weeks? It was still a lot of money, but she had never touched her I.R.A., and she was already 69 and was clearly not going to live much longer. She calculated that her savings could cover about $4,000 every three weeks until Julius graduated in a year. At the bottom of the page filled with numbers, she wrote to remind herself not to fret too much over the staggering dollar amount. \u201cExpensive: but now money is not an issue (because of imily).\u201d The previously meticulous scholar had misspelled her daughter\u2019s name.<\/p>\n
Over the next months, Sandy and Daryl boarded a bus early in the morning every few weeks and rode down to Manhattan for the treatments. \u201cI still feel as though I\u2019m me,\u201d she told him on one ride. \u201cDo you agree?\u201d He did, sort of. In fact, he was surprised by how much herself Sandy could still be, even as she became less and less the formidable thinker he had always known. He was surprised too to discover that it didn\u2019t matter to him. \u201cI realized how little of the fact that she was an intellectual played into my feelings for her,\u201d he said. \u201cThey were feelings for her, not her intelligence. And they were still all there.\u201d<\/p>\n
Daryl proved himself steadfast, and as her more casual friends fell away, either because Sandy shut them out or because they were unwilling to witness her decline, he became more central to her life. He and Karen were the ones who saw her frequently, and they were the ones she kept checking in with to be sure her suicide window was not about to close.<\/p>\n
In October, Sandy wrote to an address in Mexico listed on the website of \u201cThe Peaceful Pill Handbook.\u201d Weeks passed, and she fretted that her order had been confiscated at the border. But at last it arrived: a cardboard box, no bigger than a softball, wrapped in brown paper. Sandy eagerly took scissors to the packaging and retrieved two 100-\u00admilliliter bottles of pentobarbital \u2014 she had bought an extra one just in case, even though she believed that one bottle would be enough for a person her size. The drug needed to be kept in a cool place, so she took the bottles down to the basement. For the time being, she could leave the pentobarbital on a shelf, comforted by the knowledge that it was there.<\/p>\n
Now that the matter of \u201cHow?\u201d was taken care of, the Bems turned back to the elusive question of \u201cWhen?\u201d They still generally agreed that Sandy would probably be alive until the end of 2014. But even with the treatments in Manhattan, her cognitive deficits were becoming more pronounced. When Bev came from Oregon to visit, Sandy couldn\u2019t understand how Bev and she could possibly have had the same parents. She didn\u2019t recognize Robyn\u2019s name in conversation, and when Emily tried to explain that Robyn was \u201cDad\u2019s sister,\u201d Sandy asked who, exactly, was Dad?<\/p>\n
Daryl noticed something else disheartening. He had been following Sandy\u2019s progress as she took up the piano again. The Bems had always had one in their home, though it was mostly for Daryl, who played and accompanied Emily, whose clear, resonant singing voice carried her through student productions and into a career in musical theater. Sandy had worked her way slowly and steadily through the lesson book, moving from the simplest \u201cTwinkle, Twinkle\u201d tunes to \u00e9tudes that were slightly more complex.<\/p>\n
Late in 2013, Daryl began to see that Sandy could teach herself to play up to a certain point in a piece, but the next time she sat down at the piano she had to flip back several pages and work her way up all over again. A few months later, whenever she sat down and flipped back several pages, she could make it only part of the way to where she had been the last time she played. And a few months after that, she would sit down at the piano, flip back to the beginning and get stuck at \u201cTwinkle, Twinkle.\u201d<\/p>\n
Even that was O.K., Daryl thought. She seemed to be enjoying whatever it was she could play. And then one day, she didn\u2019t even have that. Even the easiest pieces had become too difficult. Almost simultaneously, she was no longer able to read novels on her iPad or follow movie plots with complex flashbacks. Eventually there were only two movies she enjoyed: \u201cMary Poppins\u201d and \u201cFunny Girl.\u201d<\/p>\n
Right around Christmas, Julius dropped out of nursing school and rejoined his family. Sandy no longer felt it made sense to spend thousands of dollars in the hope of staying a little more functional a bit longer for Felix\u2019s sake. She told Daryl she wanted to stop the treatments. Shortly afterward, over dinner in her kitchen, she told him something else: She wanted to talk about when might be a good date to die.<\/p>\n
O.K., Daryl said mildly, trying to stay focused on the task at hand, pre-\u00ademptively shutting down thoughts about what it would really mean to lose her. How about June? He knew how much Sandy would want to get back to her garden when the dreary Ithaca winter finally ended, and he hoped this would be a way to make her last few months happy ones. She agreed that June sounded right.<\/p>\n
At the time, Emily, who was splitting time between her mother\u2019s house and her own home, was back in Austin. She and Julius were planning to buy a house a few miles beyond the Ithaca city limits, and she was preparing for the move. One day in April, Emily returned to Ithaca and was driving home from a bank with her father, who was helping her secure a mortgage. She was at the wheel of Sandy\u2019s car.<\/p>\n
Should we change the car registration and put it in your name? Daryl asked. Emily started talking about wanting to wait until late summer, when she would be in her new house and would need to change the address only once. Maybe in July she could ask Sandy to sign over the car to her.<\/p>\n
\u201cOh, she\u2019ll be dead by June,\u201d Daryl said.<\/p>\n
Emily struggled to keep the car on the road. \u201cWhat did you just say?\u201d<\/p>\n
Daryl looked at her, surprised by her surprise. He assumed Sandy had talked to Emily. But she hadn\u2019t, and Emily thought June was much too soon. She was looking forward to the summer with her mother and her son \u2014 Felix running around his bubbe\u2019s backyard in the late afternoon light while Sandy puttered in the garden, digging a hole here, moving a rose bush there, pulling up weeds around the lilacs.<\/p>\n
Emily was angry at her father for speaking so pragmatically about her mother\u2019s death. She was angry too at her mother for choosing a date that was so soon, and at her mother\u2019s inner circle for allowing all of it to happen. That night, she sat with her parents and Robyn while they discussed the situation. Emily felt as though she was defending her mother\u2019s life against everyone who wanted her to end it.<\/p>\n
\u201cYou\u2019re just doing the math,\u201d she told Daryl. \u201cIt\u2019s like you\u2019re just calculating: Judging by the rate of decline of X amount, you can predict that by time Y this will be the case. But you can\u2019t!\u201d<\/p>\n
\u201cO.K., so maybe not June,\u201d Daryl said, backing off. He had spent his life avoiding conflict. \u201cWe just thought that with your mother turning 70 on June 22, that might be a good time.\u201d<\/p>\n
\u201cWell, that\u2019s nuts,\u201d Emily said. \u201cHow can you just pick a month like that?\u201d<\/p>\n
\u201cWhat month did we say, again?\u201d Sandy asked.<\/p>\n
\u201cJune,\u201d Daryl said.<\/p>\n
\u201cWhy don\u2019t you just say August?\u201d Emily said. \u201cIt could just as easily be August as June.\u201d<\/p>\n
\u201cWhat month did we say, again?\u201d Sandy asked.<\/p>\n
\u201cJune,\u201d Daryl said.<\/p>\n
\u201cAugust, June \u2014 you can\u2019t just draw an equation,\u201d Emily said.<\/p>\n
\u201cWhat month did we say, again?\u201d Sandy asked.<\/p>\n
Emily turned to her mother. \u201cYou slogged through the winter,\u201d Emily told her. \u201cBy late May, it will be gorgeous around here.\u201d She wanted Sandy to hold out for one more summer. She wanted Sandy to want to hold out.<\/p>\n
\u201cI\u2019m sure it would be nice,\u201d Sandy agreed. But her voice was flat; the prospect of one more summer, even with Emily, even with Felix, even with her garden, no longer seemed to be enough.<\/p>\n
The nagging sense that there might be more time, that there should be more time, is inevitable for those close to a person with dementia who wants to end her life. At an annual conference in Chicago last summer of the World Federation of Right to Die Societies, a collection of 51 member organizations that push for right-\u00adto-\u00addie laws in 23 countries, the problem of timing was a running theme.<\/p>\n
One night in April when Daryl was over for dinner, Sandy said to him out of the blue, \u201cYou\u2019re so smart.\u201d
She laughed. \u201cI guess that\u2019s it,\u201d she said.<\/p>\n
But she told him that she could feel herself slipping and that the day of her death would need to be \u201csooner rather than later.\u201d Daryl pulled the 2014 calendar down from the kitchen wall. He chose a date. How about Tuesday, May 20?<\/p>\n
Sandy agreed, and Daryl wrote it down. She told Karen, Bev and Robyn what she had decided. She planned to tell Emily but wanted to do it in person when her daughter returned from Austin. Emily and Felix arrived in Ithaca on May 13, and her parents told her that Sandy would die the following Tuesday. Emily was appalled. Just one week from today? She was sure it was much too soon.<\/p>\n
That evening, she sat with her parents on the big L-shaped white couch in Sandy\u2019s oversize living room, the site of many serious family conversations over the years. Bev, Karen and Robyn were there as well. Emily had no problem with the general idea of Sandy\u2019s ending her life soon, she said angrily, but now? Now? Karen and Robyn tried to explain how deeply changed Sandy was: She rarely laughed and seemed to find little joy in people or experiences. Emily thought everyone was thinking too narrowly. They assumed that her mother\u2019s joylessness was a result of the encroaching disease. Emily saw it as depression. The neurologist had recently taken Sandy off Prozac and started her on Zyprexa, an antipsychotic. Maybe her dose should be adjusted. Or the doctor should prescribe a different drug. Emily felt that they all needed more time to sort out what was causing Sandy\u2019s change of mood.<\/p>\n
As the weekend approached, there was another discussion on the big white couch. Karen and Robyn wanted to make it clear to Emily how much Sandy had declined in the month she was away. \u201cYou didn\u2019t see this moment, Em,\u201d Robyn said, \u201cwhen your mom was standing in the kitchen. She looked a bit lost and turned to me and said: \u2018I\u2019m hungry. What do I do when I\u2019m hungry?\u2019\u2009\u201d<\/p>\n
And just the other day, Robyn went on, Emily had been chatting in the kitchen with her mother and Bev. After Emily walked out, Sandy turned to Bev and asked, \u201cWho is that person\u2019s mother?\u201d<\/p>\n
\u201cYou are,\u201d Bev said, trying not to cry.<\/p>\n
\u201cI thought so,\u201d Sandy said. \u201dI thought it might be me.\u201d<\/p>\n
Emily now understood that Sandy was deteriorating rapidly. Karen organized a small gathering on Sunday, May 18, to celebrate Sandy\u2019s life. It was very intimate, just Sandy, Daryl, Emily, Karen, Bev and Robyn. (Jeremy had moved out West and still wasn\u2019t in contact with his family, though Sandy and Daryl left a voice mail message to let him know when Sandy would die.)<\/p>\n
At the gathering, Daryl \u00adtalked about a lawsuit that the Equal Employment Opportunity Commission filed in 1972 against AT&T for sex discrimination in its recruitment practices, in which he and Sandy took the stand together to testify as a team.<\/p>\n
\u201cDid I really do that?\u201d Sandy asked, pleased.<\/p>\n
He talked about her expert testimony in another lawsuit, filed by the National Organization for Women against The Pittsburgh Press, that went all the way to the Supreme Court in 1973 and made it illegal to categorize classified job listings by gender.<\/p>\n
\u201cDid I really do that?\u201d Sandy asked again.<\/p>\n
Karen talked about how, relatively late in life, Sandy decided to go back to school at Rutgers and get a doctor of psychology degree while still teaching part \u00adtime at Cornell. In 2000, at 56, she opened a psychotherapy practice, turning the den in her house into an office that she made comfortable with big pillows. Emily said her mother had always been fearless and had raised her and her brother to always think for themselves.<\/p>\n
The next day was warm and sunny, so a small family entourage went to Stewart Park, on the shores of Cayuga Lake, for what they all knew would be a final outing. Julius pushed Felix in a stroller, with Bev and her partner alongside them; Emily walked behind, holding her mother\u2019s hand \u2014 something she hadn\u2019t done since she was a child. When they all stopped at the playground to let Felix run around, Emily pulled Sandy over to sit with her on a bench nearby.<\/p>\n
Emily said she understood why her mother felt she needed to take her life now. She spoke admiringly of Sandy\u2019s ability to find exactly the right moment \u2014 not too early, not too late. \u201cI think you nailed it,\u201d she said. Sandy was quiet while Emily spoke, looking into her eyes. Her relief was deep and obvious, but all she said before they hugged was, \u201cI\u2019m so glad.\u201d<\/p>\n
On her last day, five years after she first went to see Mapstone, Sandy set about creating a tidy paper trail to make sure no one else would be held responsible for her death. She found the printout of an email, with the subject line \u201cENDING,\u201d that she sent to Daryl nine months earlier, stating why she wanted to die and saying that no one \u2014 not her physician, not her attorney, not anyone \u2014 had offered help or advice. In the email, she had written that she would add the date of her death, \u201cand perhaps other thoughts,\u201d when the time came, another way to make it plain that her death was her decision alone.<\/p>\n
When the time did come, there were really no other thoughts. All the ideas Sandy might have wanted to express in writing \u2014 the sophisticated musings, the incisive arguments, the upending of conventional thinking \u2014 were already beyond her. Sandy sat down with the printout of the \u201cENDING\u201d email and in longhand wrote out the date, May 20, 2014, the one she had been repeating to herself ever since Daryl wrote it on the calendar. She followed it with a simple declaration: \u201cThe time has come to end my life. I love you, Daryl.\u201d She signed it, formally, Sandra L. Bem. Then she and Daryl went for a walk in the Fall Creek Gorge, a ruggedly beautiful spot, 110 stone steps down from the noise of Stewart Avenue.<\/p>\n
When they got back, Sandy and Daryl watched \u201cMary Poppins.\u201d Emily, Bev and their partners had assembled at Karen\u2019s house. Karen wanted Sandy to feel as if \u201ca loving net was around her\u201d as she prepared to die \u2014 though it had to be love at a distance, because Sandy wanted no one but Daryl in the room.<\/p>\n
Around 5:30 p.m., Sandy took anti-nausea medicine and poured herself a glass of wine; she had read that drinking alcohol after taking the pentobarbital would mask its bitter taste and speed its action. With Daryl accompanying her, she carried the glass of wine upstairs to her bedroom and set it on the night stand. Next she had to trim the foil off the collar of the 100-\u00admilliliter vial of pentobarbital using manicure scissors and remove the small rubber stopper. Daryl held his breath, unsure whether Sandy could manage all these maneuvers on her own. She did. She poured the pentobarbital into a glass and set it next to the wineglass.<\/p>\n
\u201cNow what?\u201d she asked. Daryl didn\u2019t know what to say. They had expected the preparations to take an hour or so, yet just 15 minutes had passed.<\/p>\n
\u201cHave you decided what to wear?\u201d he asked. She said she was happy with what she already had on. She got into bed and looked at the two glasses on the night stand. She asked which was the drug and which was the wine.<\/p>\n
\u201cThe drug is clear, and the wine is red,\u201d Daryl said.<\/p>\n
Sandy nodded and looked around the room and then at the two glasses again. She asked which was the drug and which was the wine. Daryl told her again.<\/p>\n
\u201cCan I sip some of the drug and then drink some of the wine?\u201d Sandy asked. \u201cThat\u2019s not a good idea,\u201d Daryl said. \u201cYou don\u2019t want to fall asleep before you\u2019ve drunk it all.\u201d<\/p>\n
\u201cO.K., I\u2019ll drink the whole thing,\u201d she said, and she did. He asked if it tasted terrible. \u201cNo,\u201d she said. \u201cIt\u2019s intense, but it\u2019s not bitter. I\u2019m not having any problem with it.\u201d<\/p>\n
She put the glass down. \u201cHow much wine am I supposed to drink?\u201d she asked. Daryl told her she could have as much as she wanted. She took a sip.<\/p>\n
\u201cI have to go pee,\u201d she said.<\/p>\n
\u201cYou can\u2019t go pee,\u201d Daryl said. \u201cI\u2019m afraid you\u2019ll fall asleep.\u201d<\/p>\n
\u201cCan you come with me?\u201d she asked.<\/p>\n
So Daryl and Sandy walked to the bathroom together, and Daryl sat outside the door while his dying wife sat on the toilet.<\/p>\n
He helped Sandy back into bed, and within five minutes she was unconscious. Daryl watched her for a while, not quite feeling anything. Still to come were the calls to 911 and the coroner and the undertaker, and the writing up of the death notice, highlighting the reasons for Sandy\u2019s decision. Still to come, too, was the brutal reality of what it would feel like for Sandy to be completely gone from his life. \u201cHow powerful a presence is her absence,\u201d Daryl would say at a memorial service that summer, quoting from a poem by Fred Chappell. \u201cThe rooms were quiet when she was resident.\/Now they lie silent. That is different.\u201d<\/p>\n
For now, though, Daryl simply gazed at his unconscious wife. Around 8:30, he telephoned Bev at Karen\u2019s house around the corner. Bev came over to sit with him at Sandy\u2019s bedside. They were quiet, watching the sheet go up and down with each breath. Over the next hour, the sheet\u2019s rise and fall began to slow. Then it stopped.<\/p>\n","protected":false},"excerpt":{"rendered":"
When Sandy Bem found out she had Alzheimer\u2019s, she resolved that before the disease stole her mind, she would kill herself. The question was, when? Sandy Bem, a Cornell psychology professor one month shy of her 65th birthday, was alone in her bedroom one night in May 2009, watching an HBO documentary called \u201cThe Alzheimer\u2019s […]<\/p>\n","protected":false},"author":2,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"ngg_post_thumbnail":0},"categories":[5],"tags":[],"yoast_head":"\n