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Printed from The Vanier Institute of the Family's website at www.vifamily.ca. © 2007.
TRANSITION MAGAZINE A Death in the Family 
At first glance, the subject of this issue of Transition may not seem like one that could possibly contain even a glimmer of joy or hope. What can be harder to face than the knowledge not only that we ourselves will die, but also that everyone we love will eventually die as well? Why dwell on painful facts that we know only too well? One very good reason to keep death in mind is that accepting our mortality—believing it in our bones—helps us really live while we can. Unfortunately, many of us just don't "get it" until it's too late, or almost. One young man who is unusual in this regard is Lance Armstrong, the American bicycle racer who not only survived an especially dangerous form of cancer but came back to win the 1999 Tour de France. In his book, It's Not About the Bike, Armstrong says: People die. That truth is so disheartening that at times I can't bear to articulate it. Why should we go on? Why don't we all just stop and lie down where we are? But there is another truth, too. People live. It's an equal and opposing truth. People live, and in the most remarkable ways. When I was sick. I saw more beauty and triumph and truth in a single day than I ever did in a bike race. From a sociological point of view, we need to look at death in order to understand important changes happening in Canada today. People are living longer (Statistics Canada says 78% of dying patients are 65 or over), death now typically happens in slow-motion from degenerative diseases, and care of the dying and the dead has, for the most part, moved from the private domain of the home to the public realm of hospitals and funeral parlours. Death changes everything for those left behind, as James Agee shows so movingly in his novel A Death in the Family. Whether death comes suddenly or after a long illness, the family's grief can be overwhelming. In this Transition, Anne Mason and Martha Attridge Bufton share their personal experiences of losing family members. Bufton, a grief facilitator, also talks about ways of healing. Also in this issue, Thérèse Vanier shows that death and dying can bring people together—either reuniting estranged family members or creating an ad hoc family where needed. And lawyer Sally Burks describes an essential planning tool: A Power of Attorney for Personal Care. The rise of the hospice palliative care movement means better care and more support for those who are dying, and for their families. The terms "hospice" and "palliative" are sometimes used interchangeably but the hospice model focuses more on emotional and spiritual needs, while palliative care emphasizes the relief of physical pain. Putting the two together, "hospice palliative care" recognizes the importance of caring for a person's total needs so that their final days or years will be as comfortable and fulfilling as possible. The concept is receiving increasing attention from Canadian scholars and practitioners but is as yet unknown to much of the general public—which is why we include here an introduction to hospice palliative care: "Making Every Day Count" by Ellen Gardner. When a cure is not possible, hospice palliative care programs can give us the choice of being cared for at home, in a hospital ward devoted to the care of the dying, or in a special place called a hospice. Whichever setting we choose, the focus is the same: living as rich a life as we can until we die. Making Every Day Count: We cannot change the fact of death, but hospice palliative care has altered the way we experience it and the way we feel about it. In this article, Ellen Gardner of the Hospice Association of Ontario shows us that the point is not to postpone death but to make the last stages of life as comfortable and peaceful as possible for patients and their families. Contrary to what many people assume, the end of life does not have to be a sad and wrenching time of life. For those fortunate enough to benefit from the comfort provided by hospice palliative care, the end of life can be a very rich and rewarding time of life. Death and dying are not topics most people want to think about, let alone discuss. Death is seen as the enemy and medical care focuses more on prolonging life than on caring for the whole person as they face death. But at a certain point even doctors admit that a cure is not possible. As people face the end of life, what they need is acceptance and an open exploration of how they want to live and how they want to die. Facing a life-threatening illness raises difficult questions: Can I stay at home until the end, without being a burden to my family and friends? Where else can I go? Will I be able to get the treatment I need to be comfortable? Who will help me cope? Family and friends also have difficult questions. If your spouse or parent becomes ill, you wonder how you will manage as a caregiver. And how will you live without them when they're gone? For many thousands of Canadians, these questions and fears have been answered by hospice palliative care. The focus of hospice palliative care is on care, not cure. People who are dying have human, as well as physical concerns, and so hospice palliative care is designed to meet the physical, emotional and spiritual needs of the patient and of his or her loved ones. Dame Cicely Saunders founded the first modern-day hospice, St. Christopher's, in the United Kingdom in 1967. Since the concept was introduced to Canada 25 years ago, hospice palliative care has been delivered in patient's homes, in hospitals and in freestanding hospices. In Ontario, most such care is given in the home. Care for the whole person is the kind of care most Canadians (close to 90%) say they want at the end of their lives, according to a recent survey. Surprisingly though, only 53% of Canadians have heard of hospice palliative care. And, although 650 palliative care organizations currently provide support to patients and families coping with life-threatening illnesses in Canada, only one in ten people with advanced illness is actually receiving hospice palliative care. "Obviously, if more Canadians are to have the kind of care they want for the final stages of life," says Janet Napper, Executive Director of the Hospice Association of Ontario, "they need to know about hospice palliative care. And, just as important, they need to know how to access the care that's available in their own community". The Consequences of Technology A century of progress in sanitation, nutrition, medical science, and technology has prolonged life dramatically. In many respects, science has transformed the experience of death into a biomedical event. Health-care providers recommend surgeries and procedures that they hope will save lives but that often cause suffering for patients and their families. Dying patients and their families turn to their doctors to help them make end-of-life decisions, but their physicians may be uncomfortable talking about death, and few have training in this area. The fortunate few receiving hospice palliative care testify that it transforms what could be one of the darkest, most frightening periods of their lives into a time of joy and peace. The Honourable Hilary Weston, Ontario's Lieutenant Governor, has visited many hospices in her role as Honorary Patron of the Hospice Association of Ontario. She says, "Ironically, on the eve of their death, terminally ill patients report feeling more alive than ever before, more joyful, because some other human being—a hospice volunteer—has come to hold their hand." The first and most basic tenet of hospice palliative care is that when a cure is no longer possible, there is always something that can be done to improve quality of life. For one family, quality of life means keeping their father Cliff at home as he battles colon cancer. The local hospice palliative care program provides nursing care four times a day. The whole family helps with daily care, and friends drop in regularly to visit Cliff and support his wife and children. Hospice palliative care addresses the two biggest fears people have about death: pain and loneliness. Although most Canadians believe terminally ill people should be able to spend their final days in comfort and in familiar surroundings, very few—only 6%, according to an Angus Reid poll—feel they could provide the necessary care for a loved one facing a life-threatening illness. However strong we think we are, few of us want to face this kind of crisis alone. Good care for people with advanced illness requires a multi-disciplinary effort. Expert end-of-life care involves a team of family members, volunteers, nurses, physicians, physiotherapists, occupational therapists, nutritionists, spiritual counselors and others working together. While public or private agencies provide medical and practical care in the form of nurses to monitor drug levels and change dressings, and household helpers to cook and clean, hospice volunteers are there to attend to the emotional and spiritual needs of both the dying person and their relatives. Currently, in Ontario there are over 12,000 volunteers giving more than 570,000 hours of service to hospices each year. In British Columbia, volunteers provide approximately 456,000 hours of service a year to hospices. This is one of the few charitable causes that has little trouble recruiting and retaining volunteer workers for the simple reason that no work is more rewarding. In fact, amid the many tough challenges, are moments of pure happiness. "Hospice palliative care is not depressing at all," says 'Kaye Oxford, 51, a community college English teacher and hospice volunteer for over ten years. "It's all about living. There's an atmosphere of truth and acceptance, a sense of calmness. I've learned so much about enjoying and appreciating each day. We make every day count." The Honourable Hilary Weston, who has frequently witnessed the accomplishments of hospice volunteers, says, "You might think their task would be morbid and depressing but almost all of the terminally ill women I encountered told me that, as a result of the hospice volunteers, they had never felt so much relief from the pain, tension and anxiety they had been holding inside themselves." After watching both her husband and her younger sister die of cancer five years ago, 48-year-old Gladys knew she wanted to help other families deal with death. Since she started volunteering for the home hospice program run through Hospice Niagara, Gladys has discovered that offering nonjudgmental support to people in turmoil is always rewarding. "It has changed my life," she says. "The concept is so beautiful for people who would like to die at home." For relatives, the comfort provided by hospice volunteers is there both before the death and after. As Janet Napper says, "Volunteers provide the continuum of care. They are there right from the beginning, and continue to provide bereavement support for up to a year after a death." A Miracle in Edmonton Although our health care system continues to devote almost all its resources to acute care, in some parts of the country small groups of health-care providers are taking courageous steps to transform the way we experience life—and death. In 1995, over 80% of Edmonton's terminally ill cancer patients died in acute care beds, without integrated palliative care. Then a kind of miracle happened. Three doctors looked at what existed and saw it could be organized differently. With a firm idea that what terminally ill patients needed was a variety of care settings, they sought and obtained funding for the establishment of three hospices. As a result of their work, today almost 90% of Edmonton's terminally ill patients are seen and cared for by the various components of the Edmonton Palliative Care Program. Most of these patients die at home or in hospices; others die in the palliative tertiary care unit of Caritas' Grey Nuns Hospital. They are surrounded by caring professionals who know how to manage physical pain and symptoms, and who can provide the total care that patients and families need at this time of their lives. The underlying lesson of the Edmonton program in particular, and hospice palliative care in general, is choice. Health care providers must be prepared to listen to their patients and let them run the show. Dr. Jose Pereira, Acting Director of the Palliative Care Unit of the Caritas' Grey Nuns Community Hospital, stresses, "Always let it be the patient's agenda, not yours." What happened in Edmonton can happen elsewhere. It has to happen. Fifteen years from now the number of people in the 70-74 age group will have increased by 45%, compared to an increase of just 5% for the 40-44 age group. "In essence, the number of potential hospice clients will double," says Bill Johnston, Board Chair for the Hospice Association of Ontario. We're also witnessing the impact of fiscal restraint in the hospital sector, where whole facilities are being closed and where, in the understaffed facilities that remain, the medical staff are rushed off their feet. The continued growth of the hospice palliative care movement is therefore crucial. As a society, we have to come to terms with talking about dying. Baby boomers are aging and today nearly three million Canadians are caring for a loved one with a long-term or life-threatening illness. By providing knowledge and compassion, hospice palliative care has made a huge difference in the lives of dying patients and their families. It is the very heart of health caring. No one knows this better than doctor and ALS patient, Dr. Barry Smith, former Dean of the Faculty of Health Sciences at Queen's University. "We became doctors so that we could help people, not so that we could keep them alive forever. Helping patients and their families deal with dying is, in fact, the very essence of good, and successful medicine." Patients who are sick and close to death often express surprise that someone—usually a complete stranger—would devote so much time to giving them care and moral support. "I sometimes wonder why the volunteers do it," says one patient, before adding, "It seems to make them happy." For people involved in the hospice palliative care movement, there's no mystery about why they do it. "There is something not religious but deeply, deeply spiritual in caring for a person who is dying," says Janet Napper. "It's elemental. Magic happens between people and among people." For a list of "Provincial Palliative Care Associations" [ Click here ] Redefining Family in the Shadow of Death What does a family experience when one of its members dies? In reflecting on my time working at St. Christopher's Hospice in London, England, while also living alongside people with intellectual disabilities in a L'Arche community, I find that those "being cared for" in each situation have both reinforced my belief in the strengths of traditional family ties and also shaped and extended my understanding of the whole concept of family. People with intellectual disabilities, especially those who have lived in big institutions, are deeply attached to their own families even though they may have experienced familial rejection. Their need to maintain or re-establish those relationships transcends anything that communities like L'Arche can try to provide as a substitute. The death of a parent or sibling causes enormous and lasting grief, more particularly if it is unacknowledged and the disabled man or woman has not seen the parent or sibling during their last illness or not been allowed to attend the funeral. There is nothing worse than being excluded from such an important and painful life event. In any family, no matter how traditional, relationships are rarely simple or straightforward. At a time of terminal illness and death, the additional stress can bring feelings of guilt, despair and powerlessness, although it can also draw the family together as they try to support one another. The hospice world tries to validate those making this painful journey by helping family members discover the necessary resources within themselves. Understanding friends can often fulfil the same need. I remember being very moved by the sight of an elderly couple at St. Christopher's silently holding hands. She was dying and they had finally found the courage to forgive each other after many years of misunderstanding and resentment. Then there was the terminally ill young mother, writing a letter and making drawings for her little son to have on his fifth birthday, knowing she would not be there. And a distressed adolescent, at odds with his parents, arriving a few hours before his father died and discovering that, despite everything, they "loved each other," as he put it long afterwards. I remember greeting an old man and then turning to a young man and woman who had come with him, thinking they might be his grandchildren. In fact they were not related but simply lived in the same boarding house and had befriended the old man, who was alone and ill. For a year or more they had done errands for him and spent time with him. The two young people, in their different ways, were on the margins of society and were clearly supported and affirmed by their old friend. Over the next two weeks as he lay dying they visited daily, and between visits the old man kept their photographs before his eyes. Here undoubtedly was a "family" supporting each other. Often the partners and friends of those dying of AIDS-related diseases give them such tender care and strong support that they are another example of "family" concern well known to those involved in hospice work. In a hospice, professional staff and volunteers spend long hours listening carefully and responding to the needs of dying people and their families. In a L'Arche community, assistants pay careful attention to the distress often expressed by people with intellectual disabilities through their behaviour, which needs to be understood in terms of their past experience of death and other forms of loss. The quality of care lies in the quality of the listening and in trying to understand. When it is difficult to "understand" what others are experiencing, solidarity and compassion nevertheless remain; sometimes all that we can do is to suffer with another and share their powerlessness for a time. But compassion can also help us to find ways of expressing sadness. In a L'Arche community, death may of course be sudden and unexpected but usually it comes as the anticipated outcome of a long illness. When this is so, all in the community are prepared for what will happen and can spend time with the dying person if they wish. When someone in a L'Arche home dies, as many people as possible come together to share a moment of grief and to pray. The evening before the funeral, the body is usually brought back to the house and lies in the room in which the person lived. Members of the household and the wider L'Arche community, the family and friends from the neighbourhood, gather in the sitting room to share their memories of the dead person. There is great importance in being together and sharing a mixture of sadness, tears, laughter, singing and prayer. The funeral next day will have been carefully planned. Friends will have been notified, and most of the L'Arche community— including very disabled members—will be at the service. For most of us, this is a healing experience of being included in and sharing this painful time. It is also an important reminder of the need to "belong" that we all experience, however disparate and fragmented our "family" may be. It wasn't as if his death was unexpected. The specialist had told us years before that the illness was terminal. But my father decided to live until he died, and his illness just became part of the family. When he went into hospital that Easter, it was simply another crisis to be managed. And then it wasn't. As I pulled into the parking lot at the hospital, I saw my sister standing on the sidewalk, smoking a cigarette. She had quit months before. I knew that things had changed. The death of a parent can be a time of tremendous upheaval. The very core of the family is shaken and must be reshaped and rebuilt if it is not to fall apart. For the children, it is a loss of permanence and security. No matter what our age, we remain children as long as our parents are alive. We are protected from mortality by another generation. As I entered my father's room, I saw the couple who were my parents. I saw a wife caring for her husband, one last time. I saw my father, frail and dying. He was already on a journey that he could only travel alone. And I knew I wasn't ready to let him go. I felt the responsibility of a child to care for both my parents at that moment. I wanted to make those final hours or days a time for my mother to just be with him, without having to deal with all the awful but necessary mechanics of a hospital death. And I wanted more time. It may be wishful thinking, but we tend to believe that dying is a gentle journey, with the dying person making final poignant expressions of love and reassurance. But experts tell us that dying is often filled with unmet hopes of reconciliation and completion. A dying person may not "go gently into that dark night" and a family member—often the spouse—is usually on the receiving end of that sometimes angry struggle. Palliative care workers know that family members need tremendous support to understand that for a dying person, the only safe place where they can direct their struggle—the one place of unconditional love—is their family. Right to the very end, a family is a place where they have to take you in, have to accept you for who you are. Dying is no longer something we do easily within the family home. My family drew together to protect and comfort my father, to ensure that he was treated with dignity and respect in this institution called a hospital. And we discovered that those institutional people, those professional doctors and nurses, were also sons and daughters and parents. They were there for the living as well as the dying. As I lay on a cot beside my father's bed, they checked my "vital" signs too with offers of food, of a hug, of understanding and comfort through the long hours of the night. They understood that this was a very special time for me. I had been given the gift of being with my father as he made his last journey. He had been there as I entered the world and I was able to be there as he left it. Truly the stuff of family. As my mother rested at home, I talked to my father, sang to him and, as the dawn began to break, I turned his face to the window so that we could share this one last beautiful sunrise. Father and daughter together for the last time. I said goodbye and I was ready. My mother came and we left her alone with her love of over fifty years. My sisters and I drew close and held each other, knowing, without saying it that our small family was no longer. We were entering a new time in our lives. A family was passing. Give sorrow words. The grief that does not speak I grew up hearing stories about my Dad's family who lived in a small farming community near Ottawa. Out of all the stories, I learned a simple truth: don't hold your grief inside. This truth has been proven to me over and over again from my own experience of losing my father, my mother and my younger sister, and from the countless stories of other bereaved people to whom I have listened. At times of great suffering, living with our pain can be almost too much—not only because the feelings themselves can be overwhelming but because our society's rules about feelings discourage children and adults alike from expressing grief. When we suppress our grief, however, it does not go away It goes underground and becomes embodied. Then it pushes out somehow, often in very unhealthy ways like addictions and suicide. But if we can let it up, let it out and let it go, then we are doing what I call "the rite stuff," and grieving in healthy ways. The rite stuff means giving our grief a voice. My family story is one of intergenerational grief. Not only because the stories of loss have been passed from my Dad to me and from me to my children but because ways of grieving tend to be passed along too. My grandparents, Jack and Addie Attridge, had two sons: my father and his big brother Bob. While Dad was away at university, Bob, who had been drafted during World War II, was killed in a terrible training accident. Dad took the train home and, when he was met at the station by church elders, he asked first after his mother. She had already lost two brothers and Dad knew those losses had been devastating. Surprisingly though, when Dad arrived home he found that his mother was being very stoic, while his father was keening. Jack rocked and wept for weeks. Gradually, his weeping lessened, until finally one day he got out of his chair and began picking up, bit by bit the pieces of his life. He was never the same and always missed his boy but he re-entered life. He had expressed his grief. According to my father, however, Addie could not let her feelings come up. Slowly but surely she withdrew from life, never to recover. Dad learned from his parents and passed what he had learned on to his children. "Always talk your problems out" was his motto. Growing up, I always thought the emphasis was on the "talking." For three girls, this was no problem. After his death, however, I began to realize that the emphasis was as much on the "out" as it was on the "talk." Letting the feelings up and out can bring relief—even if it is only temporary. Unfortunately, my mother, like my grandmother, believed that "real ladies do not burden other people with their problems," and she too avoided giving her grief a voice. Mom was beautiful, sensitive and stoic. When Dad became terminally ill, and then our middle sister Elizabeth was diagnosed at age two with cystic fibrosis, Mom buckled down and worked hard to keep her family as normal as possible. She lived with their illnesses for twenty years but then, after Dad's death, and with Elizabeth nearing the end of her battle with cystic fibrosis, Mom took her own life. As far as I know, she found it very difficult to let her emotions out, even temporarily. She seemed unable to give voice to her grief in a healing way. I decided that I couldn't afford to be the third generation to react self-destructively to loss. I had to find another way. So I did what many people do. I reached out towards those I thought would really understand: other bereaved people. I told my story many times, I found my voice and I began to heal. Through this process I have learned that the grief journey is a rite of passage. The journey begins with the death (or the anticipation of death) of someone close to us. The loss brings with it symptoms that can include numbness, shock, paralysis and loss of memory. Once the initial shock wears off (in no predictable length of time) the bereaved person begins a descent into a period of searching. Now there can be greater pain, more confusion, withdrawal from others and many, many unanswered questions. We may have self-doubts, and we tend to resist the changes that a death in the family brings about. During this searching stage, however, a transition can happen. Slowly—perhaps very slowly—some of our questions are answered. Not all of them. I don't believe that we will ever find all the answers we seek. But some answers do come and, as they do, the bereaved person moves closer towards what I call "repeacing"—putting some of the old pieces of our life back together, adding some new ones and finding some degree of peace. A re-peacing of our lives is when we can live a new life without the lost loved one. Some pieces of our old self have come back—memory humour, taste buds—but part of us is gone forever. The way we see the world has changed. We are ready to live this new life because we have made a profound transition and are able to have a continuing, spiritual bond with our loved one. Sometimes we revisit our losses—especially when someone else dies. A new loss tears the scab off the old wound. Being suddenly plunged back into mourning the old as well as the new loss can be a shock. For me, it felt like one step forward and three steps back. When Dad died, I was 25. I grieved, I changed, I found some repeace. Mom died seven years later. It was tougher—the cumulative effect of loss. And it felt abnormal because suicide is a taboo subject. But I mourned and I re-peaced. When Elizabeth died two years later, however, I did not re-peace so quickly I was enraged at the chaos of life and did not want to integrate back into a world that didn't hold my sister. All three losses were open wounds, but I kept telling my story and eventually began to heal. The journey though grief never completely ends, and it often begins long before an actual death. I now realize that my grieving probably began at age five when Elizabeth was first diagnosed. At that point without anyone realizing it I became a bereaved sibling. I lost a healthy sister and, in a way, I lost my parents too. Parents who are caring for a terminally ill child simply do not have the energy to attend to everything. In 1961 there were no support services for children whose siblings have cystic fibrosis, and I have carried that grief with me ever since. I am not alone in this experience. Many grieving adults seek bereavement support for a recent loss only to find that they are, in fact, also mourning a childhood loss that needs to be processed further. A peer support group is a very powerful way for both adults and children to voice their grief. Groups are safe because they are non-judgmental and confidential. They help people understand that grief is normal, and they allow everyone to grieve in his or her own way. Groups are validating, which frees us to be intimate with our own pain. Children find it very beneficial to be with other grieving kids. Organizations such as Bereaved Families of Ontario offer groups for kids as young as four and up to 21 years old. Children often say it helps to know that they are not alone, that they are not different from everyone else, and that they belong. So do adults. Groups can be very helpful when we are grieving a loss that is stigmatized by society for being inappropriate—for example, a suicide. Grieving the suicide of a loved one is both the same as, and different from, other losses. It is the same because grief is about being in pain, not knowing if you are going to survive, and often wondering if there was something you should have or could have done to prevent the death. And it is the same because very few deaths really seem "appropriate"—except perhaps when an old person dies a peaceful, relatively painless death in their own bed. However, grieving the suicide of a loved one is different from other losses because of the stigma attached to the act of taking one's own life. Many people consider suicide so inappropriate that traditionally it has been punished in many cultures. Since it's impossible to punish someone who has died, the punishment has often been transferred to the surviving family and friends. Even in Canada today the support that normally follows bereavement can be withheld. The suffering of the family and friends can then be intensified if they cannot acknowledge and talk about the death. Sharing in a support group for survivors of suicide, however, can give this grief a much-needed voice. Giving voice to our grief means telling our story as often as we need to until we don't need to tell it any more. For some of us, telling our story might mean not just talking about it but also writing it down—maybe in a grief journal—or finding other creative avenues for our emotions such as painting or music. This usually means taking more time than other people may think appropriate or healthy. Why is this the rite stuff? Because it offers the chance to more fully adjust to the massive and disruptive change of losing a loved one—a chance that is not always offered by the rites of passage commonly used to accept death. The common rites of passage for many families take place in the first or second week after a death. At this point, most bereaved people are still in shock and denial. The death rites pass quickly and later the bereaved may have almost no memory of this time. When they emerge from the cocoon of shock to the inevitable pain of the next stage of grief, they may be met with other people's expectation that they are "getting better" and will quickly resume their old life. Often people will say "You should be over it by now." But how can we so quickly adjust to no longer being someone's parent, spouse or child? The old life is not coming back and grief is not something to "get over"; it is a process we need to actively engage in throughout our lives. Bereaved men and women can feel very isolated because of the lack of understanding and social support for bereavement. In the future, an ideal world would allow three weeks of compassionate leave for a bereaved employee, instead of todays standard three days. Three days is hardly enough time to plan a funeral, let alone to make the transitions demanded by such a loss, and to begin to rebalance the family. Like adults, many children also face a lack of support for their grieving process. Often we disenfranchise bereaved children in the sense of disallowing their grief because we want to protect them or because we think they don't understand death. They are not included in the rituals of death and their grief has no voice. Yet even very young children do grieve and they need the opportunity to express their feelings, ask questions, tell their story, and be told the truth in age-appropriate ways. As their concept of death and loss changes with each developmental stage, they will need to come back to their losses and reframe them in new ways. My own children often teach me about how kids develop their concepts of death. Last Halloween was a perfect example. My five-year-old son Bruce thinks he's omnipotent and that death is reversible. So naturally he was Batman, a superhero who saves the world and keeps everyone safe. His nine-year-old brother Sean said to me "Mom, I know you're not going to like this but this year I have to SCARE PEOPLE." So he, of course, was Death. This is on target for a child who is beginning to understand that death is irreversible, universal and inevitable. He is focused on his physical body and what will happen to it after death. His Death mask was a horrible skeleton, but at least it was developmentally correct. To give support to someone who is grieving, the best thing you can do is to simply listen. And, as you listen, try to be non-judgmental and to validate whatever feelings come up. It can be very challenging, as each member of the family grieves at his or her own pace. Often parents find it confusing when their children appear unaffected, while they themselves can barely put one foot in front of the other. But chronological time is not psychological time. When children are ready they will grieve-if they have permission to do so. No matter what age we are when we lose someone we love, if we are given the opportunity to voice our grief, we can heal. By finding healthy ways to express our feelings of loss, we are doing the rite stuff. The How and Why of Preparing a Power of Attorney for Personal Care In Canada, the individual's rights are paramount in all but exceptional circumstances. We are generally a fiercely independent people. Nevertheless, all of us have been dependent and incapable of caring for ourselves. As infants and young children we relied on responsible adults to provide us with guidance, housing, health care, nutrition, physical care, hygiene, education, entertainment and clothing. Most of us wanted to be free of this adult supervision as early as possible so that we could make our own choices. I, for one, could not wait to wear high heels when I was a teenager, despite my mother's insistence that they would harm my feet and back. No matter how badly our past choices turned out to most of us adults, the thought of losing our ability to choose for ourselves is repugnant. Yet that is exactly what will happen to some of us. In general, people are living longer and, as a result we are more likely to suffer a serious illness or injury that will leave us incapable of caring for ourselves for either a limited amount of time or permanently. In case you become incapacitated, it is important to have a valid Power of Attomey for Property, which allows a named Attorney (not necessarily a lawyer) to act on your behalf in managing your financial affairs. You may set out specific powers and restrictions in a Power of Attorney for Property. You should also have a Power of Attorney for Personal Care, a legal document that expresses your desires and preferences regarding your health care, safety, food, shelter, clothing and hygiene. Both of these Powers of Attomey must be executed by you while you are still capable. A Power of Attorney for Personal Care allows you to express your wishes should you become incapacitated. It is important for everyone to have a Power of Attorney for Personal Care; without one, major decisions about your life will be made for you instead of by you. For instance, the document can contain detailed directions regarding any health care that you may or may not want if you become incapacitated. You may specify in your Power of Attorney for Personal Care how it is to be determined whether or not you are capable of expressing your needs and choices. Forgetting where you put your dentures is very different from forgetting where you live. If you have trouble remembering where you put your dentures, you're being forgetful. But when you can't remember where you live, you are not competent. You can avoid future family disputes about whether or not you are competent by setting out exactly how it is to be determined that you are no longer capable. You may want that determination to be made by your personal physician or another professional who has no vested interest in controlling you or your finances. Or you may prefer to have trusted family members decide, either alone or hand in hand with a professional. Generally, incapacity is determined when a person is no longer competent to make decisions, or is not competent to know the effect of making or not making a decision. You should talk to your Attorney/Care Provider about your future care while you are still competent. Your Attorney is bound to follow your instructions, so they must first agree to act on your behalf and they need to understand your wishes. It is also a good idea to periodically review your directions with your Attorney; as long as you are still competent you can up-date your Power of Attorney for Personal Care at any time. Here are some suggested topics to discuss regarding your wishes should you become incompetent: Housing: What sort of living arrangements would you accept? Would you insist on care at home, at a hospital or in a long-term facility? Food: What types of food would you want your substitute decision maker to choose for you? If you have a special diet— maybe you only eat Kosher food, or you're a vegetarian, or you have food allergies—make sure your Attorney knows. Hygiene: What would you want your caregiver to do if you refused to bathe? Clothes: What type of clothes would you want to wear? Do you have cultural or religious reasons to wear certain clothes such as a turban? Health Care: If your heart stopped, would you want CPR? If you developed pneumonia and could not breathe on your own, would you want to go on a ventilator? If you were in a coma with no hope of recovery, would you want machines to keep you alive? What sort of disability would you be willing to live with and to what degree? Could you live with... ...impaired speech? Most Powers of Attorney should be drawn up by a lawyer. And, if you want to attach a Living Will or Advance Directive dealing with specific medical care or withdrawal of medical care, you should also consult your physician. You need to understand the terms used in such a document and to discuss with your doctor what you mean by such phrases as "quality of life," "meaningful recovery," "artificial means," "heroic measures," etc. These terms mean different things to different people. There are organizations that have been publicizing Living Wills under the guise of promoting the right to choose when to die. But, in Canada, euthanasia is not legal and it does not appear that it will become legal in the near future. In recent years our justice system has confirmed this, for example, by imprisoning Robert Latimer for taking the life of his disabled daughter. Although our society frowns on assisted suicide, you may set out instructions in an Advance Directive or Living Will concerning the refusal of medical care. Refusing care may hasten the end for a dying, suffering patient with an irreversible condition. For example, your instructions might say no to radical surgery, CPR or resuscitation if your heart stops, antibiotics to treat pneumonia, a ventilator if you can't breathe on your own, feeding by tube if you can't eat, etc. Your wishes should be made known to your Attorney/Advocate, as well as to your doctor, well in advance of any illness. A Power of Attorney for Personal Care is a very useful tool for retaining your independence even if you are incapacitated by an iliness, injury or disability. It ensures that your stated wishes will be followed by a trusted personal representative, your Attorney. If you value your independence, you will take the time to plan for your future—and that planning must include a Power of Attorney for Personal Care. Grief is the price you pay for love. Dealing with Loss To find a grief counselling service, self-help group or other resource, contact:
Books Am I Allowed to Cry?, Maureen Oswin. Covers bereavement issues for people with intellectual disabilities. But Won't Granny Need Her Socks? Dealing Effectively with Children's Concerns about Death and Dying, Donald W. Knowles and Nancy Reeves. New Beginnings: Living Through Loss and Grief, Betty Jane Wylie. Examines "grief from a long-term, lifetime view." Suicide Teen Survivors of Suicide—a Web site for teens who have lost a friend or family member to suicide: www.teensos.org. Suicide Information and Education Centre Web site: www.siec.ca. Hospice Palliative Care For a list of "Provincial Palliative Care Associations" [ Click here ] Canadian Palliative Care Association, Suite 131c, 43 Bruyère Street, Ottawa K1N 5C8, ph 1-800-668-2785 or 613-241-3663, fax 613-241-3986, e-mail info@cpca.net, Web site www.cpca.net. Hospice Net Web site-information and support for patients and families facing life-threatening illnesses: www.hospicenet.org. Meeting Death: In hospital, hospice, and at home, Heather Robertson. A personal exploration of how and where we die in Canada today. History/Sociology The Hour of Our Death, Philippe Ariès. A history of Western attitudes about death. Social Perspectives on Death and Dying, Jeanette A. Auger. A readable, recent Canadian textbook.
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