ia preteen, ace ommend 2 WOMEN AGING WITH KNOWLEDGE ws A TonewstoNe Book Pususien sy Stow & Scnuster NewYork London Toronto Swiney Tokyo Singepore THE NEW OURSELVES, GROWING OLDER a PAULA B. DORESS-WORTERS AND DIANA LASKIN SIEGAL IN COOPERATION WITH THE BOSTON WOMEN’S HEALTH BOOK COLLECTIVE ILLUSTRATIONS BY ROSELAINE PERKISCONTENTS + Foreword to the 1987 Edition xi Foreword to the 1994 Edition xiii Project Coordinator's Preface xvi Preface to the 1994 Edition xix ‘THE POTENTIAL OF THE SECOND HALF OF LIFE xx! AGING WELL 1. AGING AND WELL-BEING 3. 2. HABITS WORTH CHANGING 22 3, OUR LOOKS AND OUR LLiVes 38 4. WEIGHTY IssUES 47 5. EATING WELL 52 6. MOVING FOR HEALTH 64 LIVING WITH OURSELVES AND OTHERS AS WE AGE, 7. SEXUALITY IN THE SECOND HALF OF LIFE 81 8. BIRTH CONTROL FOR WOMEN IN MIDLIFE 101 9. CHILDBEARING IN MIDLIFE 108 10. EXPERIENCING OUR CHANGE OF LIFE: MENOPAUSE 118. 1, RELATIONSHIPS IN MIDDLE AND LATER LIFE 133 12, HOUSING ALTERNATIVES AND LIVING ARRANGEMENTS 151 13. WORK AND RETIREMENT 169 14, MONEY MATTERS: THE ECONOMICS OF AGING FOR WoMEN 187 15, CAREGIVING 204a , UNDERSTANDING, PREVENTING, AND MANAGING MEDICAL PROBLEMS 16, WOMEN'S HEALTH AND REFORMING THE MEDICAL-CARE ‘SYSTEM 221 17, NURSING Homes 249 18, JOINT AND MUSCLE PAIN, ARTHRITIS, AND RHEUMATIC i DisorDers 262 19. OSTEOPOROSIS AND FRACTURE PREVENTION 279 20, DENTALHEALTH 293 21, URINARY INCONTINENCE 300 22. HYSTERECTOMY AND OOPHORECTOMY 315 23. HYPERTENSION, HEART DISEASE, AND STROKE 333 ‘ 24. CANCER 347 25. DIABETES 374 26. GALLSTONES AND GALLBLADDER DISEASE 382 27. VISION, HEARING, AND OTHER SENSORY LOSS ASSOCIATED WITH AGING 389 28. MEMORY LAPSE AND MEMORY Loss 403. 29. DYINGAND DEATH 415 30, CHANGING SOCIETY AND OURSELVES 427 RESOURCES General Resources 441 * Agingand Well-Being 447 © Habits Worth Changing 450 * Our Looks and Our Lives 454% Weighty Issues 454 © EatingWell 456 + ‘Moving for Health 458 + Secualityin the Second Halfof Life 459 © Birth Control for Women in Midlife 462 + Childbearing in Midlife 463 + Experiencing Our Change of Life: Menopause 466 + Relationships in Middle and Later Life 468 © Housing Alternatives and Living Arrangements 472 * Workand Retirement 474 © Money ‘Matters: The Economics of Aging for Women 477 + Caregiving 479 + General Health 482 + Women's Health and Reforming the Medical-Care System 484 Nursing Homes 487 + Joinrand Muscle Pain, Arthritis, and Rheumatic Disorders 489 + Osteoporosisand Fracture Prevention 491 « Dental Health 491 ‘+ Urinary Incontinence 492+ Hysterectomy and Oophorectomy 493 + Hypertensiun, Heart Disease, and Sicoke 494 + Carer 494..% Diabetes 497 + Gallstones and Gallbiadier Disease 493. + "Vision, Hearing, and Uther Sensory Loss Associated with Aging 498 * Memory Lapseand Memory Loss 501 * Dyingand Death 502 + Changing Society and Ourselves: 508 Index 507 ne cee ce eeUPDATE BY PAULA. DORESS WORTERS WITH SPECIAL THANKS TO ANNE ARSENAL URCES FOR THIS CHAPTER ON PAGES 5024 {ih many cultures, preparing for and making sense of death is the work of women, especially of old women, Whether or not it’s fair or best, women in most societies, including our own, still act as the nurturers, caregivers, and custodians fof those near death. Even with the removal of (death to the institutional sphere, dying remains he province of women who work in those insti- rations. last person most of us see on earth is a woman—the ‘iurse’s aide (significantly one of the east paid aid least valued workers in our society)... These are, in a sense, the midwives of death! Thus, it is most often women who meet the emotional and pragmatic needs surrounding death, By the age. of fifty-seven I had nursed my husband ‘through terminal cancer, lived through widowhood, and been close to two dear friends who died. 1 assisted one friend and supported her family through the process of her committing suicide, 1 feel that my middle years have been significant in bringing me into close and familiar contact with dying and death, BEREAVEMENT AND GRIEF Grief is a normal reaction to the stress of losing someone. It is not a pathological reaction that needs to be “cured.” According to Phyllis R. Sil- verman, founder of the widow-to-widow move- ment, we may go through several phases of grieving the loss of someone we care deep About. At first, we may fecl numb or dazed, tunable to believe that such a grievous loss could have happened. That numbness often carries us through the first days and weeks, allowing us to function. Gradually, we begin to come to terms with the reality of the loss, realizing that we can no longer live as before. Eventually, when we can remember our loved one with less pain, most of us accommodate to our loss. Then we restruc- ture our lives to make room for new roles and relationships? - : The following is excerpted from ‘a woman's journal recording her feelings about her lover’. death overa period of years: Inwhat later seemed to be extraordinary word usage, the doctor called me to say the operation on Karen was “sue cessful.” They resectioned her colon and took out the 415+ THE New OURSELVES, Growine OLDER + ltonor, she would not need a colostomy. But the tumor hhas metastasized and she will die: six months to two years is all they give her. No real hope. tis 2:30 Aas and T cant sleep because of rage at God, and then because of guilt. And because of fear jor nyself, How will live without Karen to tell me Tam brit liant and beautiful? Images run through my head. Her hand warming my asthma-congested chest. Her step—quick, strong, fast up the stairs. As I remember that sound, I smile; the pain recedes. But if shut my journal, the pain will return. Does everyone who is dying look bewildered? Her head ir my lap: her body spooned in pain, Dying means deperddency. Pain, Listlessness. Fever. Exhaustion. Dying is frightening. Death is frat, but dying can drag on and on and on, destroying everyone. It saps the strength of the healthy ‘and makes them sick My first birthday without her. Our anniversary. Her first birthday dead. My first Christmas and first New Year without her. One year it was the greatest New Year of my life, and the nest year the woman who gave it fo me was dead. Each marker brings Karen to me and takes her. Soon any first spring without her. My first summer. Then a year since I last saw her will pass. A year since her death; a ‘year since her funeral. And I will put «@ headstone in my heart: Karen, my dearest? Any one loss can remind us of all the other losses we have known—especially the earliest ones, which might not have been fully under- stood or explo: When ey lover died I was fifty-six. Over the next two years Irelived, in away, al ofthe other great saiinesses of ‘ny life—when my father left us when I was little, my mother’s death, the endings of other love affairs. I don't think I had realized how much there was for me 10 ‘mourn! [a sixty-two-yearold woman] Acceptance of death can come only after a full experience of mourning that may last many months or even years. My daughter died almost forty years ago, when she was ten. Um still angry, and [still miss her. But for years after she died I couldn't quite believe that it had really hap pened—I kept thinking I heard her in the house, Now 1 ean accept what happened, even if I dont like it. (a sev: centy-eight-year-old woman} My husband died eighteen years ago and even though today 1 have « happy; full if, I still miss him. Lam often reminded of what he is missing, especially at happy moments, such as the children’s high school and college graduations, which are tinged with the wish that he were alive o share the joy. (afifty-four-year old woman} Mentalhealth experts have observed that “troubled mourning’ can be a principal reason for unhappiness and problems later in life Mourning can go wrong in a variety of ways. We may be unable to grieve at the time of loss, feel- ing too numb to cry or to express our feelings in any way at all. We may begin to grieve but cut the process short, because of pressure to appear self- possessed for a job or family or friends. Or we may suppress our grief, drive it underground, in which case it is likely’ to erupt again, perhaps with surprising intensity, at the time of some later loss. In these cases, we may try to protect our- selves from the pain of grief by adopting a self- protecting mask of composure that allows us to carry on with life as usual. Sometimes a physical illness may appear, or self-destructive behavior such as drug or alcohol addiction, an eating dis- order, or repeated involvements in unsatisfac- tory relationships. One or more aspects of mourning can become exaggerated. We may dwell on guilt, self-blame, anger, anxiety, or sad- ness until we become completely incapacitated and such feelings take the place of grieving. In each of the above cases, the underlying problem is that the person who mourns has i some way not completed the mourning process. 416i i we Ste ctegt © ARIE NAR + DeaTH AND Dvinc + ‘Sometimes friends or relatives, in a misguided desire to be helpful, urge us to “get on with it,” when in fact what we need is to honor the urgency and depth of our feelings for as long as we need to do so. Payiug attention to our feelings and talking about them with friends or relatives is extremely important. When my husband was dying people helped us so much: They came o visit aed brought food so that I could spend ‘more time with him. They gave flowers and hugs, gave the children extra attention. Some people were too frightened to visit and I understood. But the friend who came fifcen ‘hundred miles to see him before he died, the friend who came five hundred miles to hold my hand during the funeral, and the fiend who stayed atthe cemetery to cover bis grave after the service will forever have my gratitude Twas comforted by the notes and cards people sent ‘me. I read theme over and over again for many months, nurtured by the care, sympathy, and support they pro- Vided. Best of all were the handwriten notes that included something about the writer’ relationship with ‘my husband or memories of times together—sometimes things rhat were new to me, received notes from people I had not known and was strengthened by their considera- tion. Even the printed cards and the simplest notes indi- cating that someone was thinking of me comforted me. Nineteen years later, I still have all tke messages in a box s0 our now grown children can share with their children how the grandfather they will never know touched the lives of so many others. (a ffty-four-year-old woman) When my husband died it was like 1 was paralyzed socially or months after. My two good friends did me a (great service just by sitting with me. Sometimes T would ‘ery and sometimes I'd just be angry. Sometimes Iwas so sad I could hardly talk. They'd come over to visit me at least ice a week, and they stayed with it for more than a ‘year. When I felt better I could be a good friend to them ‘again. (a sixty-four-year-old woman] earned a lot about anger after my mother died. Some- how, when Iwas mouming, lots of anger came out that didnt know was in me. My daughter suggested beating @ pillow witha stick 0 get the anger out, and finaly 1 g0¢ 0 Teould tall with my husband and also with my daughter about some of the reasons why felt so much anger at my oor mother. fa forty-three-year-old wornan} Observing religious andior cultural tradi- tions, writing about our feelings in a journal, talking to family and friends, meditating, read- ing poetry, watching emotion evoking movies or plays, and singing or listening to familiar songs canall help us feel our grief as deeply and fully as we need. Joining a self-help group of people who are grieving, such as a widow-to-widow group or a hospice group, can be a great comfort. Such groups help us realize that what we are feeling is “normal” and is shaved by others. ne same of as i ws get professional rel rom a clergyman, for example, or per- haps from a bereavement counselor—to deal ‘with the process of mourning. 1 functioned extremely well most of the time (everyone always said how well), but I felt like I was just going through the motions, waiting for my husband to come home. Three times in the past four years I've arrived at the point where I felt a need for counseling. Each time Tve learned more about myself. The counseling has helped me grow and find new meaning in my life. [a ‘woman in her fifties) The loss of a child or grandchild can be par- ticularly painful. If death is caused by a sudden, unexpected accident that allows little or no time beforehand for preparation, as is often the case when someone we love dies young, the loss may be even more difficult to come to terms with. We cannot comfort ourselves by saying, “Well, she’s lived a long and full life and it was her time to die,” Even if we lose a child in her or his middle How To HELP A DYING oR RECENTLY BEREAVED PERSON ‘Give them the time and quiet listening to express their feelings. Express your own sadiness and regret, but do not presume to tell a bereaved or dying person that a death is “for the best,” even if after a long illness. We don't really know how some- ‘one feels unless she or he tells us. * Offer distractions, other topics of mutual interest, but be comfortable with silence and resist the need to fill every minute swith words. Your very presence will help, Take care of a dying or bereaved person; do not expect her or him to take care of you. Bring food if you visit someone's home. ‘Offer help, and be specific in your sugge: tions. Say, “I have two hours free on Sat- urday. Do you want me to shop for you, or is there something else I can do that ‘would be helpful?” 417+ THe New Oursetves, Growine OLDER + or late years, we may feel a sense of unfairness, as if the natural order of things has been vio- lated. This was not a loss we expected to sustain. Losing my only daughter to AIDS was the hardest, most hheartbreaking thing that has ever happened in my life, 1 kept trying 10 make sense of it. I couldn’ get over my ‘guilt. Why did I have to get sick? Why didi’ I make her Stay where she was instead of coming here to take care of ‘me? Who would have known that she would fallin love with « man who would give her AIDS? He shot between hhis tes and hidden places on his body so she wouldn't notice the tracks, Only my faith in God and the help of my therapist carried me through my anger, mty guilt, and wanting to die myself. Finally, ! was able to accept her death and to cherish the happy years we had before she passed on. (asixty-nine-yeat-old woman] ‘When death is expected, not only the who is dying but also those who expect to be sur- vvivors have time to make some preparations, get relationships and business affairs in order, and reminisce and say good-bye. My father died of a heart attack and my mother died of ‘cancer My father’ death was a surprise and a shock, and ‘my mother’ death was a long ordeal. ! know that people sometimes think thar sudden and quick death is east, drut for me is was importzet to talk with my mother and ‘even jst 10 sit and hold her hand, and though those lat ‘weeks and months were hard Y'm grateful we had them, With my father there was no time to ay good-bye. I wish there had been. (a forty-nine-yearold women] When we are faced with the shock of a sud. den, unexpected death, we often console our. selves with the knowiedge that the person we loved did not suffer. While having time to pre- pare for a death may be easier on our survivors, ‘many of us would choose an unanticipated and painless death for ourselves. When death comes at the end of a prolonged and chronic illness, our feelings may take longer to sort out. We may have already grieved, years ago, for the loss of the whole, well person we used to know. My sister developed the first symptoms of Alzheimer’s when she was sixty-two. [took care of her, moved into her apartment for five years so she could stay in familiar surroundings. Then Thad to put her into a nursing home, ‘where [visited her twice a week. I never missed a week for nine more years until she died. There was very litte ‘that anybody could do for her. It was very hard to see her ‘become just a thin litle curled-up ball in her bed. For the last seven years she didn’ recognize me or even talk at all. ‘She was my ony siser, and it was torribly sad for me. [a sixty-two-year-old woman} We may feel a sense of release for ourselves and forthe person who died after prolonged su fering. But later, intense, renewed feelings of loss may surface. Even though I thought Ihad prepared myself mentally for the inevitable, I found I was terribly shocked, even sur prised, when my mother finally did die. ! understand now that shock after a death is common among those elose to ‘person, even when the death was expected.* ‘COMING TO TERMS WITH OUR ‘OWN DEATHS: One of the important developmental tasks of the second half of life is coming to a personal under- standing, perhaps even an acceptance, of death. Some of us continue to feel ambivalent and scared about acknowledging death. 418+ DEATH AND DyINo + of my fiends have died young. We all knew each for so long. (We had a card-playing group.) Three of were my age. One of them I met recently and recog. er name from elementary school, and so we were same age. Another one was a few. months older sa we bere all inthe sume age bracket. Now my sister in-law died and she was only sixty-three. This has been on ny mind so much lates, you know, reaching this point t people my age are starting o go. I never used fo think f these things before, Like if an aunt or an uncle died f8 one thing, but now its cousins! One cousin my died this summer, s0 I start to think “Its our turn” ally, I'm very glib about it, but in my gut J cant Eaccept that one day I wont be here, [a seventy-fouryear Mold woman) Maybe no one can ever be fully “ready” for death in the sense of knowing about and fully fPaccepting the experience in advance. But we can RE prepare ourselves in a variety of ways.* 5. I feel a greater awareness of a mystery and. beauty in life BP since Ihave accepted death as a personal eventuality for pe. I dont rememiber exactly when that awareness came, bi: Before then, Ihad thought of death “out there,” and now I E friow that one day it wil be a reality for me. Eventually I jam going (0 die. In a way, that has released me for more ‘vid living, (a seventy-cight-yearold woman] g: ve dealt with losing loved ones many times in my life fond after seventy years of repetition ofthat experience of Ey wrief I find the thing that’s so hard to deal with is that «Some person who has been a reality in your life no longer “ists. When you're a kid, you learn how to separate fan. f#asy front reality. But ther, when you get older, you have Bo learn how to let goof a reality that person no longer exists. I've got @ handle on that from years of experience with it. So I no longer worry about my own personal death, (a seventy-three-year-old woman} Some of us are comforted by religious, spiri- tual, or humanistic beliefs about life and death. believe that tam not just a body which is perishable but Lam a spirit which is eternal | believe that death is ony an exit from this temporary life of unreality into a glori- ous new life of reality. I hope, therefore, that there will Be only rejoicing, not grief, at the time of my release. I am ying to avoid being “earthbound” hy releasing my attachments to material objects and persons before 1 ‘enter this transition. [a ninety-two-year-old woman] What I've been aware of lately because of a number of instances of my being thrown up against death is that 1 shave a different perception of relationships. Death is not @ termination of my life because my influence will con tinue until the last person who knew me has died. [a ‘woman in her fifties] Living each moment as fully as possible is probably the most important way to help our- selves become less fearful of death. Ido not look to the future with dread. 11 has to be shorter than my past but it does not have 10 be less rich. 'm more relaxed. Idon' try 0 do everything. That means I can take time for quiet, for meditation, alternate this with activity, and see how I can keep a moving, living balance between the two, [a seventy eight-year-old woman} Death, I am leamting through my own experience, need not be frightening. After all, we are all bor terminal cases, because we will all die, at one time or another, Deaths is part of life. F have lived life fully and enjoyed it greatly, which makes it easier to consider bowing out than ifyou fel that you have missed out on alot.* Providing support to others can also help us come to terms with death. We can serve as resources for one another and create supportive networks that give us the strength and compan- ionship we need to get through hard times. On the day before her jifcy-cighth birthday, my friend Maggy Krebs died m a Boston hospital. Magay was a femn- “Tich Sommers, age seventy, ina eter to members of the Older Women League about her expected death. Teh founded and led the Sventy-treeshoutand member orga Nanton after her eancer as dagnosed 4194+ THE New OURSELVES, GrowiNe OLDER + inist artist. Her humor, her drawings and paintings, and her music had filed many lives with joy. Because I believe that the final months of her life and her death were ‘models forall independent women. 1 want to tell vou part ofthe story. For months, Maggy gathered around her a group of her friends, who tended to her at her home and atthe hos- ital, In addition to caring for Maggy, we met each other regularly, often weekly to share our grief and anger atthe ‘anticipated loss of a friend, to find ways to share the responsibilty of taking care of her and to support one ‘another. We became a family for Maggy and for each other. ‘One of Magay’s legacies to us isthe pride we fel that we were able to give her the comfort and love she needed, But Magey also left a legacy of hope to all women who feel themselves to be alone by teaching us that we can sup- port each other through the depths of ines, eshaustion, fearand oss.* Sharing the responsibility as this women’s group did avoids the guilt women sometimes feel when they cant do everything by themselves, An illness support group allows each woman to pat ticipate to the extent she is able to do so. ‘Some Day Tans Fuesit Some day some atom of tis flesh shall be commingled with a tree, Will taste the resinous sap spicing its veins; Wrestle with tempests; dance with silver rains: And stand a singing tower against the sky. My lapping blood existence will partake with some far; hill-giet lake, will cherish waterlilies on its flood; Will shadow winging bird and dreaming cloud; And hold the evening star within its cup. Thave so joyed in campfire’s comradeship; Have felt such grip of awed delight at dogwood's miracle; Such rapture in the living slope of hill; Surely [shall be fire and flower and grass! Fear? Fear transfiguration glad as this? Such loveliness? With these I have so loved, to be enfurled, inwoven inall the beauty of the world? ethaps—who knows?—My very heart shall be for one mad hour of flaming ecstasy sunset! Plorence Luscomb *Sce pages 192 and 206 forcartoons by Maggy Krebs. In the last four years I have come from the despair to festing that life is good and that ther stil iat reason and a need for me to bein this world. Helping train haspice volunteers continues to Be therapeutic ig te, With the deat of my shad, things which on read about in books or heard others talk about becant very real and personal to me. Much of my own grief work ‘was done with the volunteer training classes, where the volunteers gave me the opportunity 10 talk about my experiences and my life, and the aloneness I felt atthe fos of ny et frend end companion [a woman a her fifties Most of my friends are gone. You just have to say toyour- self that it's something that’ going to happen. But is not easy. It helps to do all you ean for your friends while they reliving. {do alot of ealling onthe telephone. Ihave 4a friend [call every day. He's been in the hospital along time. Thave another friend who lives down in another town who's quite sick that I call at least once a week. Death used to be scary (0 me. Four or five years ago, if thought of dying, 1d push it out of my mind. But now, think, after al, ve lived out my days and I keow I've got togo. {a woman in her eighties] Florence Luscomb, sufjragist labor organizer, ‘ivilrights and peace activist, Died in 1985 at age nninety-eight Elen Stab 420+ DEATH AND DytNo + ‘Another way to prepare ourselves for dying is care of any unfinished business in our ss. Most of us have unresolved relationships— ne that go back quite far—that we may want gp work out or perhaps just make a final state- int on. We can seek out people with whom we ive unfinished business and see to it that some unforgiven hurts are healed—and recognize some can't ever be healed. Those who have de the effort to do this say tis very important. efore her death my sister asked to see each of her five thers and sisters. We talked about the ways we had en close and trusting with each other, and we also tlked about some of our long-standing fights and dges. I know thatthe hour that she and I spent going dr our times together was very important to me. [twas ‘way to say good-bye. And I think it was important healing for her, as well. [a forty-seven-yearold oman) Ej:tcan remember the day my grandfather died, in a tractor ‘accident on the farm. The men brought him in from the field to the house, and my grandmother, my mother, and ‘my aunt bathed and dressed him. I was a loving act, and f ritual, and J was terribly impressed. I was eight at the time, My own father went from the hospital bed where he F< died to a funeral kome, and I know my mother doestt? feel like she was a part of his dying. I'm tying 10 wnder- stand that difference, and what I myself want to do in ‘that regard. fa sixty-seven-yearold woman} In some cultures, death is understood to be a natural transition at the end oflife. Among some Native American tribes, for instance, each life is seen as a road that is expected to come to an end, The healers in those societies see themselves as “keepers of the road,” guardians of health for as & Jong as the journey goes on—not as persons who ‘work to prevent the journey from ending in its ‘expected transition, But in our contemporary culture, we invest j heavily in science and want to believe that through it we can control all the events of our lives. We have hope that the discoveries of science will allow us to prolong life and prevent “death, These attitudes make it hard to look on death as the natural, expected end of life, and make it harder to accept the inevitability of death. Physicians often use every possible means to protong life without regard for its quality. The result can be feelings of anguish and heipless- ness on the part of the dying person, relatives, and friends. When my husband had his heart attack I thought 1 should rush him to the hospital. The ambulance came right away but by the time they resuscitated him he already had a lot of brain damage, He never recovered consciousness. Everyone in the ICU [Intensive Care Unit] worked very hard to save his life, and he did live for ‘another two weeks, but as faras I'm concemed he wasn't realy alive—just a body attached to a lot of tubes and machinery. Lwish now that Thad just held him, cradled his head, when he first fell! could have said good-bye that way. [a sixty-five-year-old woman] As some medical professionals are beginning to recognize, focus on the inappropriate pursuit of a cure when the situation is clearly beyond hope can lead medical personnel to make a per- son's last days more painful and difficult than necessary. Of course, there are situations of acute emergency in which one cannot be sure whether recovery is possible; it is very hard to know the right thing to do in such a case. But some medical treatments designed to cure, such as chemotherapy and radiotherapy, may increase the dying person's discomfort. ‘Many of us may feel more secure in a hospi- tal when we are very ill. Or we may feel we want to try, or should continue to try, medical reme- dies on the chance that one may heal us. My daughter died of breast cancer at age foty-swo. We ‘thought she wanted to deat home and we were ready to ‘ake care of her there. But inthe end the doctors urged her to try one more round of treatment with chemotherapy ‘and she went back into the hospital. She never came hhome again, and forthe fast week she was so sick and in such pain tha she di even ware her teenage children ‘als her [a snty-efght-year-old woman] Discomforts such as pain, shortness of breath, weakness, nausea, and vomiting often precede death. The last days of living can be eased by concentrating on comfort rather than eure. (See Dealing with Pain in the chapter aan+ THe New Ourseives, Growine OLDER + Habits Worth Changing, pages 35-36.) Occa- sionally, treatments such as radiotherapy or even surgery may be used to bring relief of pain and discomfort, though it is more common to use high doses of pain-relieving drugs. We were lucky enough to find a doctor who was willing 10 come to the house and could prescribe drugs for Grand- rma’s pain and also for the nausea. We heard about the doctor because she had performed the same service for a neighbor down the street, and she made a hard time ‘much easier than it might have been. (a thirty-six-year- ‘ld woman] ‘TAKING CONTROL OF OUR OWN DEATHS Many of us would prefer not to be subjected to machines and tubes and complex technological procedures that may extend life a few extra days, weeks, or months at the expense of whatever quality it may be possible to achieve. Some of us who have such thoughts, however, will surely die in the very circumstances we deplore. How does this happen? ‘We tend to forget experiences that most of us have had as patients, like being moved from one treatment to another with little explanation of what is really thought to be wrong, how the treatment is supposed to work, and what to expect next, as if once we become patients we have given over the right or desire to make choices. The physician often doesn't present alternatives from which we can choose; the alter- natives of no treatment or of treatments such as acupuncture or herbal remedies are rarely dis- cussed. This failure to present alternatives makes it difficult for the ill person to make informed decisions. Being a patient can feel like ‘being ona slippery slide you cant easily get off. My daughter spent the last months of he life going tothe hospital for outpatient treatments, and feeling terrible. wortt ever do that, Tm not saying it’s any better to be sick {rom the cancer, but at least you'd fel like its your bod dnd your life. Ti want to have some tne to myself live ait fT thought f was going to die soon. (a ifty-nine- yearold woman] : Here are some things to remember about doctors and dying: * Physicians cannot actually predict recovery, death, or future disability for any single ; they can only make broad, educated guesses based on statistics for large popula. tions. They deal in group probabilities.” * Many people whose death was predicted with firm certainty by medical experts have recov- ered: this happens with sufficient regularity to remind us that iliness is not fully understood byscience. + Each individual has a right to say how she or he will live out the last days of a soon-to-be. ended life. If living outside a hospital or with- out the discomfort of medical treatment is what you want, your right to do so ought to be honored. Ten years ago, when 1 was fortyfive, I was told I had breast cancer. For the next year I had chemotherapy and radiation—I was sick and worried the whole year. But now I feel that when the cancer comes back I just want to live with it, except for painkillers when I need them. 1 feel that ifm going olive on, or die, I want to be able to expe- rience each day as my day. I've written letters (0 each of ‘my children to let them know how important this is ome. Even when we try to stay in control, an ill- ness can become overwhelming and may deplete our energy reserves, especially if we do not have a dependable support system. Though we may aspire to a serene death for ourselves or a loved one, surrounded by familiar faces, we must rec- ‘ognize that humans have never been able to con- twolor predict death. I felt like I was in a dream. had promised my husband wouldnt send him back to the hospital, but I was up for twenty hours each day taking care of him and I just ‘couldnt go on. He agreed to go back because I promised him that I would live there with him. The last ten days he didn’ talk but he seemed t0 be comfortable. They were giving him morphine intravenously. The doctor woke me at 3 Ast 10 tell me he had died while I was sleeping. It bothered me that 1 was sleeping when he died because 1 +had promised him that Twould be with him. Idon’ know if he would have said anything if 1 had been awake. No ‘matter how hard you try, it doesn? always work out the ‘way you want, (a woman in her sixties) Advance Medical Directives IE you ‘decide thlatiin some circumstances you ‘would prefer to have no treatment, or treatment for comfort only, you have a right to refuse treat- ment. In every state, constitutional and common Jaw support the right of any competent adult to refuse medical treatment in any situation.* How- ever, writing your wishes in an advance medical 422Girective can protect your right to refuse treat- Bent, make it clear to your family members and Pealth-care providers what you want, and help em to comply with your wishes, » Anew federal law requires hospitals, nursing nes, HMOs, and home health agencies serv g persons covered by Medicaid or Medicare to de Information ‘upon admission about directives and to explain your legal and choices. If they will not honor your they must tell you, so that you can select er institution. State laws vary on this, and have provisions for doctors who, for rea- of conscience, will not comply with certain es. Check with your state attorney generals They may be able to provide you with ‘ate forms as well. ‘Advance medical directives can be stated ina ng will or in a durable power of attorney for alth care. In a living will you give directions ‘your future medical care, stating what you fant and don't want. A durable power of attor- éy for health care is a document in which you ‘Appoint a health-care agent or proxy to represent pu in the event you become unable to commu te your wishes. If possible, discuss your ‘with your health-care proxy or represen- and give her or him copies of all relevant iments, ‘As of June 1993, all fifty states and the Dis- trict of Columbia authorize either living wills or B the appointment of a health-care agent. Three , Massachusetts, Michigan, and New York, paiithorize only the appointment of a health-care gent, and two states, Alabama and Alaska, a B thorize only living wills? F Living wills are valid only in cases of termi- pal illness—that is, when a person is expected to lic in the near future, usually within six months, a direct consequence of injury or illness. They ‘not honored in situations when a person has slow degenerative disease or when a very old firson has “muliplo systems flue” In these ations, appointing a health-care proxy throug! durable power of attorney may be more effec- > Another drawback of the living will is that it : Operates primarily for treatment refusal. If you {Want all possible treatments tried, a durable Bower of attorney is more useful” and may serve for treatment refusal aswel, a Assuring that you get adequate medical treat- E ment if you are severely ill may take more than ‘writing out your wishes. The cost-containment ‘emphasis in medical care has resulted in people F + DEATH AND Dyine + being discharged from hospitals when they still hope for recovery and want treatment. Older persons, especially those with limited funds, are at-an especially high risk of being discharged prematurely agains: their wishes. Dying at Home At one time, almost everybody could have expected to die in their own homes—even in their own beds. Now, death more often occurs in a hospital or nursing home. Recently, however, "pore people are insisting that they be allowed t0 die outside of these institutions. Idon' want anyone to tell me what to do. I ived all these ‘years with my eight children, and made decisions, right orvsrong, about how we'd live. I want to decide for myself now: I've no need for medicine, drugs, or hospitals, never have, and 1 don't want to start now. I want to die with dignity. I'm comfortable in my home among my own ‘things and with my family around me. They'l care for ‘me. They" respect my wishes. Ican see who [want in my ‘own home. Ican eat what I want to eat. know my own body and what it needs or can handle. Iv a private per- son. There's no privacy in the hospital. I want my chit- dren around me. 1 need their touch, their love. [a seventy.six-year-old woman} ‘Mom needed to be hostess and be in charge in her home even while dying. She continued to direct and guide her children about her care. While we held a cup to her ‘mouth, she would urge, “Eat with me.” When she needed ‘more care, we hired hospice workers. When I introduced my mom to the new worker, Mom was already in her “withdrawal from the world stage." But she drew herself ‘together from her fetal position under the blankets to peek at this new person, and, in her weak, raspy voice, said, “Welcome to my home.” These were her final words to the world. What a magnificens, feisty, independent woman this mother of mine was. She showed us how to live and ‘how to die. Mom passed on as peacefully as possible con- sidering her pain and weakness. [a filty-seven-yearold woman, the daughter of the wornan quoted above] A.woman who is a midwife wrote the follow- ing account of her mother’s death: ‘This past year brotight serious illness to my mother, Mar- ion Cunningham. We sought conventional medical attention, plus an array of alternative healing practition- ers. Afier months of misdiagnosis, Marion diagnosed her- self as dying. We admitted her to the hospital and, alas, the diagnosis of lung cancer was finally acknowledged. My brother, my sister, and I stood in disbelief at her side, 423+ THe New OURSELVES, GRowiNe OLDER + Marion Cunningham Roxanne Cummings Pore A pioneer in natural childbirth and in single parenting, she had always been our source of strength and inspira- tion. Weall ried together that day. Then Marion spoke to ime, words which would affect our caring of one another in the months to follow: "Why dont they have midwives for what I've got?” We decided tocar for her at home. ‘One night at midnight 1 received a call from my brother... "Mom says she will die today and that you all should come.” dnd thus i was thar we gathered round. My brother requested that I sing “The Goodbye Song,” which I had ‘written just a month before. th see you in the babies’ faces I feel you in the wind hear you in the quietest places Tihold you in my friend. I played on my guitar and sang to Marion, and in the hnidst of the song I could hear her breaching relax and knew she would die. We watched one tear roll down her face and then she took her last breath." Hospices A relatively new institution called the hospice hhas developed in response to the growing inter- est in dying at home. The hospice is modeled after medieval way stations that accommodated both travelers and those who were dying (death being, metaphorically, another forni of travel). ‘Contemporary hospice agencies started out as coalitions of volunteers who were trained to visit and offer help to dying people in their own homes. Most hospice agencies now also have specially designed inpatient buildings where people can get short-term help managing un- comfortable symptoms and then go back hor ‘The services of medical professionals are a rele. tively minor part of the care offered by hospices, ‘They also provide trained volunteer visitor, vis: ing nurses, nurses” aides, homemakers, and bereavement counseling for family and frends, ‘One of the major goals of a hospice program is to maintain the quality of life through spiritual and emotional support, medication, and meth- fds such as meditation and visualization for pain control. They will also provide temporary relief for caregivers. (Our son died of Hodgkin's disease two years ago. Toward the end he said he didn't want to go back into the hospi- tal, no matter what. We called the hospice and they sent a volunteer who came to vist John two days a week a frst and then, at the end, every day. He was almost like a ‘member ofthe family, and the help he gave made a bi df- ference to all of us—especially 10 Jolin [a seventy-six- year-old woman} Some of these services have always been available from visiting-nurse and home-care agencies, clergy, church-visitation committees, and other local sources. But a hospice program coordinates all these services. Medicare, Medic- aid, and some other insurance plans may pay part of the bill. Not all communities have hos- pice agencies, however. If you want to locate the hospice nearest you, call a visiting-nurse agency or a local hospital's social service department. (See Resources for this chapter for the two national hospice organizations.) A local Social Security office can also tell you which hospice programs are Medicare certified. Choosing the Time of Our Death Two years ago my mother, who was then eighty-three, told ‘me that she planned to end her life by taking an overdose of pills. Her health was failing rapidly and she was going blind. She didn't want to become weak and dependent. She had always been a fierce and active woman, She wrote her intentions ia fetter to me—I was her only close family member—and she told two friends and her doctor. We all cold her that we would not help her accumulate enough pills do the job. And I think we all worked very ‘hard to help her find new reasons 16 be happy to be alive. But finally I understood that she really wanted to do what she had planned. and in the end, offer she gathered together enough pills and took them, sat with her for the last thrtysix hours as she slipped away, I cant tell you show many of her friends and acquaintances told me how ‘graceful my mother was it her life to the very end. For my 424+ DEATH AND Dytne + ‘mother, given her personality, staying in control of her own life made her graceful. [a forty-one-yearold woman] There is a great difference between someone, terminally ill and in pain, who says, “Tve lived 4 j Gull, long life and I think this is may time to die,” , and someone who is viewing life through the fog (of depression and says, “Idon't want to go on Ine eR mS der ogame, ing.” For a depressed person, a suicide attempt fy may be a call for help in finding resources 10 p Tegain pleasure in living. You can get help for such a person through a suicide-prevention p organization like the Samaritans (see Resources for this chapter), tis very difficult to know what to do when a cone wants to end her or his life. Talking with this person can help us distinguish tempo- rary feelings of discouragement from the convie- tion that a life of pain and deterioration would be unbearable, Laws vary from state to state, but nearly everywhere, a person who helps a dying family member or friend commit suicide risks prosecu- tion as an accessory to a crime. To protect their loved ones, some dying persons have chosen t0 g0 off by themselves and take a fatal substance. They have had to do without the loving support and the talking and planning that would have eased the transition for everybody. Claiming the right to control the end of our lives in no way minimizes the seriousness or the finality of the decision, nor the pain and grief of those we leave behind. A number of organiza- tions, such as Choice In Dying, now publicize issues and can help us deal with them per- sonally (see Resources for this chapter) Practical Matters Before we die, some of us may want to arrange to donate vitally needed organs, such as kidneys and corneas, for transplant Purposes, We can also plan the kind of funeral or memorial service ‘we want. Helpful, practical information on these matters is available from the Older Womens League as part of their “Living Will Packet” (see Resgurossforthis chap a A growing number of people today want to keep ‘matters relating to death under the control of the ic i ‘mation itself, and last rites and memorial ser- vices can all, within broad limits, be designed to suit the wishes of the person who has died and her or his survivors. The person I talked ro about renting a place forthe memo- rial service told me sharply that I had no business plan fring a memorial while my mother was stillalive. But lam ery thant thas we did plan it when we did. First of all, as amazed fied thaeFwasin absolutely mo condbeon ‘0 make sensible plans after she ded... Planning the forms of the memorial beforehand helped mie face the real, {ty of my mothers death. Thinking about and writing what ! would say brought the love we had shared back ‘me once more. Petcipating in the memorial gave me a ind of peace and acceptance t hardly dared hope for!™ If you have preferences about your burial, it will be much easier for your family and friends to carry out your wishes if known ‘in writing. This will also Protect your loved ones from having feelings of guilt, because they will be assured they ate following your wishes, Remember that the funeral business is just that-—a profitable business, There are some reg. ulations, from state to state, that govern this industry. You can leam about them by call- ing your state attorney general’ office. 1 foundout later thatthe funeral director lied to me when the said stare law required a cement lining for my hus. bands grave, contrary to our personal and religious belief. [a fifty-ive-year-old woman} Those of us who are struggling to come to a better understanding ofthe great, universal ran. sition at the end of life have many opportunities to ponder the matter: Experiences such as watch. ing persons we are close to approach death, be. ‘coming aware of symptoms that might signal the inning of life-threatening ilIness putting ne affairs in order in a written will, working as avo. unter in a hospice agency, or being part of a ‘supportive network for a dying friend or relative, all can help us come to a peaceful, personal un. derstanding of death. Notes 1. Tish Sommers, Death—A Feminist View, Paper presented at Drake Uuiversity Law School, Des Moines, Towa. March 271976, * 2, Phyllis R. Silverman, Helping Women Cope with Gri Bere i: Saget 3. Carolyn Ruth Swift unpublished manuscript 4 Sty Spencer lag Read Broom Vl 7, ‘No.6 (November-Decamber 1988), pp. 40-42, 5.3. W. Wordes and Willam Proctor, Personal Death Awareness. Englewood Clifs, I: Prentice Hall, 1976 425+ THe New Ourseives, Growinc O1pen + 6. Swift, op.cit. 7. See Stephen Jay Gould, “The Median Isn't the Message.” Discover, Vol. 6, No.6 une 1985), pp, 40-42. 8. George Annas and Joan Dennsberger, "Compe- tence to Refuse Medical Treatment: Autonomy vs. Pater ‘alistn.” University of Toledo Law Review, Vol. 15 (1988), p. 561-96, 9. Choice in Dying, Inc., (see Resources for this chapter), State Statutes Govemiing Living Wills and Appointment of Health Care Agents, June 1993, 10. Barbara Mishkin, ‘Making Decisions for the Ter. ‘minally IL” Business and Health, ne 1985, pp. 13-16. 41. Roxanne Curamings Potter, “To Lite—To Death.” alfornia Association of Midwives Newsletter. Syeing 1984, p.7. 12, Spencer, op.clt. 426