5: Emotional and Spiritual Needs


Chapter 10: Emotional Aspects of Dying and Death

To the Person who is Dying

To the Family and Friends Providing Care

Communication

Patient Needs

Their Fears

Labeling Feelings

Children and Dying

Family and Friends

Euthanasia and Assisted Suicide

There are three groups of people affected when someone is dying: the person who is dying, family and friends, and caregivers. Individuals react in different ways and for different reasons but there are common feelings.

Two of the most important things to remember about how different people react to emotional difficulties are:

People's feelings of love, grief, frustration, joy, anger, compassion, and fear are real and unique to them. Something should be done with these feelings either through conversations or actions. These feelings and their reactions to them are similar to how they have dealt with difficult times before in their lives. The world does feel sometimes like it is coming apart but there are ways to deal with these feelings. There will also be times of happiness, laughter and joy, and these need to be shared as well. The most recommended process for dealing with your difficult feelings is to talk with family and friends and/or with professional people or volunteers who regularly deal with these situations. For personal, family or cultural reasons, people may feel uncomfortable talking openly about their feelings. They may be more comfortable with things like prayer, meditation, quiet walks alone or with loved ones, going fishing, writing, singing or listening to music, or concentrating on favorite activities to reflect their feelings.

Sometimes people say or do things that unintentionally hurt the person they care about. If their concern and caring are real then their compassion and love overshadow any errors they make. There are specific things you can do to improve the life of someone who is dying, but few are greater than your expression of caring.



To the Person Who is Dying

Asking for help, and allowing people to help you, is the last gift you can give others. This is a time when everything you do or say that is kind and understanding is remembered. The people who care for you help you in intimate ways. Your patience as they try to do their best for you inspires them long after you have died. What you do now can provide decades of loving memories. It is not always easy but it is always remembered.

You may feel unhappy or sad about dying and leaving loved ones behind. You may get angry when the television breaks or furious at any injustices you have experienced. You will feel any, and all, of these emotions along with those of love, trust, laughter, joy, and pride in your family and friends.

There is no prescription for what you must or should feel. It means that you ask for help while offering help in return. It may sound like a cliché, but this time in your life can be one of the most rewarding as your body begins to wear down. There may be times when needing help going to the bathroom, changing your clothes, or eating your food feels undignified. In fact, these are just indications that your body is slowing down in preparation for death. Nothing more than that. It is exactly as these signs occur that you will be physically comforted and supported, hugged, have people's undivided attention, and be loved and cared for. Use these opportunities to look outward to strengthen your relationships with others and to enhance your bonds of love through memories that will last lifetimes.

You won't like everything that people say or do for you. Like all of us, you probably never have. That's natural. Pick the needs that are most important to you and talk to the person about what is most helpful to you and what you prefer they do not do or say. You have the right to ask for help and the right to agree on how it is provided. This is not about charity work for others; this is about mutually sharing the gift of time left to you.

Please read the suggestions offered to those caring for you as well and use them to talk as openly as possible about your love, your concerns and your needs.


To the Family and Friends Providing Care

When someone we love is dying, they may have body and emotional changes that may be difficult for them but also difficult for us to watch. At their most vulnerable moments, you have the opportunity, as never before, to demonstrate and feel unconditional love. No matter the positive or negative experiences you have shared together before, this period before death is remarkably filled with opportunities to evaluate what is truly important in your life, e.g., people, love, and the mutual benefits of caring for someone who is dying.

There may be times when you want to cry alone or in the supportive arms of someone you trust. Feel the feelings as fully as you can. They can be enormously healing even as you sob uncontrollably.

When you can't, or don't want to provide some physical, emotional or spiritual support, find someone who can. You can ask within your own circle of friends and neighbors or you can ask your home care case manager or local hospice program for help. See Chapter 19 on support circles to understand how immensely helpful they can be during these times.

The person who is dying may experience raw emotions of pure joy and pure fear. Your presence allows them to share their positive feelings and find support for their fears and anxieties. People need the time and space to go through these emotions and may not always be able to tell you so. Providing opportunities for them to share their thoughts, feelings or fears does not mean that they will accept and respond to this opportunity. However without time together, they will not have that chance and may feel completely isolated at one of the most vulnerable times in their lives.

There will be moments when discussions of sports, weather, politics or gossip have no meaning at all compared to the bond of silence that exists between you, a look of unconditional love or a touch of complete trust. These are precious moments. Take the time to enjoy each of these moments fully and remember its significance for the years ahead.

It may sound like a list of platitudes but what I can tell you is that wisdom collected over thousands of years reaffirms people's basic needs to care and be cared for, to love and to be loved, and to experience life within a community of compassionate, thoughtful people. This is one of the times in our life when we can fulfill all of those needs together.

There will be difficult times physically and emotionally and, perhaps, spiritually. There may be times of exhaustion and frustration. There may be times of physical pain as you experience grief for someone who hasn't died yet (anticipatory grief). I hope this book will provide some of the information you need to help you through such times. I also hope this book encourages you to seize every moment, every glance and every touch of unconditional love, trust and gratitude that occurs.

With all the difficulties, suffering and frustrations with bureaucrats that I experienced caring for my parents, grandfather or other family and friends over the years, I can say that I am, without doubt, a better friend, spouse, parent and person because of these life-defining opportunities. I hope you are able to say the same and share your lessons with others too.

Please read the following suggestions to your loved one who is dying, if they wish. Use this opportunity to talk as openly as possible about your love, your concerns and your needs.



Communication

From the research done in this field, it is clear that the best thing that people can do during a difficult emotional time is to share their feelings and needs with others. Speaking with family and friends, a spiritual leader and/or professional counselors help people to air their feelings, look at their choices and understand more clearly what is happening to them. It is important to remember that, in the best of times, people hear only 20% of what is said and forget 80% of that within 24 hours. Therefore, much of what you say to someone during these difficult times is forgotten. What people remember may not be what you thought was most important in what you said. Help them remember the important things through repetition, writing things down and asking them to repeat back, in their own words, important points.

The most powerful communication tool to help people say what is truly on their mind is to (1) ask a question that cannot be answered by one or two words, (2) remain silent while the person rehearses their answer in their head, and (3) listen intently to their answer. The less you talk, the more the other person can talk comfortably and safely.

For example, I asked my father's physician if I could be the one to tell my father that he was dying. I went to my father with these words: "I have talked to your doctors and I have done some research on your condition. Would you like me to tell you what I have found out?" My father knew that if the news was 'good' that I would have told him right away. Therefore, he knew my news would not be easy for him to take. My silence gave him three options: (1) yes I want to know, (2) no I don't want to know, or (3) yes I want to know but not right now. He chose the third option. For the first time in his medical history he had control over information.

When he was ready, he asked me short questions and I gave him short, clear answers. Over several days he learned everything he wanted to about his condition and his future. I never had to worry about when was the 'right time to tell him the news' because he had control. It was very freeing for me and for him. It was the silence after the question that allowed him to control the information.

Communication is possible with all people including those who are confused and those who cannot speak anymore. Communication begins with the attitude that 'I am here for you.' It begins with the gift of your presence.

The following are some specific tips for communicating with people who are dying and who perhaps have dementia or are confused:

Everyone, regardless of their mental or physical condition, needs to be treated with the respect and care given to others of the same age. Even if they do not remember who you are, they do have emotional memories of being treated well, of love, of grief, of anger and of joy. Whenever possible, let them be the parent, spouse, child, friend or neighbor they have always been to you.


Appropriate touch, holding hands or stroking their face are all ways to communicate our care for someone.


As a person's language skills diminish, change your expectation of what kind of communication you can have with them. They may understand more than they can express. Provide them with the words and information and expect a shorter or non-verbal answer.

There are many ways to communicate without using words. Hand movements, eyes, body language and sounds are all ways to express ideas and feelings. Concentrate on the present rather than asking them about their day, what they did last week, etc. Talk more than ask.


Use any opportunities to help them connect to their past. For example, in my extended family it is quite common to prepare anniversary books or videotapes that highlight a couple's life together. In one case, the husband became increasingly confused in old age and began his day by going through his 40th anniversary 'book' complete with pictures of all his family members, his work history, where he lived, etc. It helped him to make sense out of his mental confusion.


Any routines that you can establish that are comforting for both of you is very helpful. Perhaps you brush the person's hair at the beginning of each visit. One of my sister's youngest memories is of combing our grandmother's hair. You might always spend time listening to special music, reading from a special book, putting photos into an album, watching the birds outside the window or writing notes to family members who live far away.


Have a visitor's guest book by the person's bedside so they can see who has come and who comes regularly. Sign in the book every time you come and write a word or two about what you did. The person may use the book to keep track of family and friends. This is also helpful for the caregivers as a confused patient may forget that someone has visited and may be very angry or hurt by this. A quick look at the book can point out who was last there for a visit.


Use appropriate humor and tell funny stories about what the person has experienced in the past.


Be patient. Conversations may take longer than normal. You may have to repeat yourself several times before you are understood. If you accept that things will take longer, your body language and the words you use will show that you are not in a rush.


Although we try to 'lift someone's spirit' we must not avoid difficult conversations completely. If someone in the family has died or is going through a difficult time, sharing the information may help the person express, in some way, some of his or her own grief and sorrow. Such conversations can be powerful in how they return people to a previous level of intimacy in their thoughts and actions together.


Silence and just being with someone are gifts. Many of our elders who have spent loving decades together find great comfort in sharing a room without having to talk all the time. For many baby boomers and their children, silence is quite discomforting. We are used to the television or music being on all the time in our homes, work places and cars. One of the gifts visitors can offer is the gift of shared silence. Quietly read, think, daydream or pray together. Sitting down near the person at eye level is less intimidating, more relaxing and gives the patient a sense that you are not in a rush to leave.


Patient Needs

No list can describe all the needs of each individual who has a terminal or life-threatening illness. Here are some of the most common ones:

People need the hospice philosophy of care to meet their physical, emotional, spiritual and information needs. This care can be provided informally through one's family, physicians and community resources and/or through a formal palliative care program.

People need to participate in their own care so they have a sense of control during a time when they may feel that they have little control. They need to make decisions, to actively help others to care for them, and to participate in relationships with those they love. Some people choose not to do these things. They need to know that they are, in fact, making a choice and that they can change their mind at any time.


People who are constantly receiving care need opportunities to give back in some way. Imagine constantly receiving gifts from someone who does not allow you to give something back in return. Such one-sided giving leads to an enormous burden of gratitude on the part of the receiver. We all have gifts to share, no matter how small or how large.


When my mother was ill, a visiting home nurse who was usually full of energy and care arrived feeling somewhat troubled. My mother asked her what was wrong. After some persistent prodding, Mary told my mother about how a teacher's meeting she was having later that day about her 12-year old son's behavior made her a bit nervous. Over the following 10 minutes my mother and Mary spoke as mothers; not as patient and nurse. My mother was exhausted from talking so much, but exhilarated as well, because Mary saw her as a valued equal with information worth sharing. She slept more peacefully after that visit than after any other. Mary left with practical advice and encouragement from a person she had grown to respect and admire. She benefited as well and left smiling and energized. Mary saw the gifts my mother still had to offer and allowed her to share that gift. My mother died a few weeks later.


Other Needs and Feelings of Someone

Who is Dying

People do not fundamentally change their character once they know they have a terminal illness. If they were happy and able to communicate openly before finding out that they have terminal illness, they will probably continue to do so. If they are quiet and reflective by nature, they will probably stay that way. If they were unpleasant and difficult to be with before, they could remain that way now.

Family and friends may treat someone who is dying differently unless they are made aware that the person has not changed dramatically. Because someone is terminally ill does not mean that she cannot work, play, talk, sing, tell jokes, laugh, swear, have sex, eat her favorite meals and be the person she has always been.

There is no reason to give up sex, socializing, and work unless physical conditions make it impossible. Yet many people do give up many of these things because of social expectations that they should be resting in bed, conserving their energy or fighting depression. A person's abilities decrease as the illness progresses but there are often years or months of life before overall lifestyle is drastically reduced. Open communication will let others know what the person can do, wants to do and still enjoys doing.

Other needs include what Robert E. Kavanaugh and others describe as:

The need to be accepted and respected as the unique people they are rather than the dying person other people see.

Permission to die, from all the important people in their lives. People who are dying do not want their loved ones to be angry or deny that they are dying because it makes their illness and saying goodbye too hard. Loved ones need to accept the truth that the person is dying. Pretending otherwise puts up barriers to communication. People end up isolating each other because they cannot talk about their loneliness, hopes, fear and feelings of love.

A need to voluntarily let go of every person and possession that they hold dear. People need to say goodbye to their families, their friends, and their material possessions (photos, hobbies, books).

Fear of an afterlife can make accepting death hard. People may ask questions like: "What happens to me when I die? Is there a heaven? Is there a hell? Will my spirit leave my body?"

One doesn't need a specific religion to think about an afterlife. If people are concerned about this, they need to talk to someone who accepts their view of God and can help them develop their concept of God and the world that may exist after death. A chaplain, a social worker, a psychologist or a very close friend can listen and give comfort that people may not be able to give themselves.

People who have written about their experiences before their death have given us a better understanding of what might be going on in their minds and hearts. It is common to read about people who are dying finding that their five senses come alive. They see more clearly: the colors of autumn, the snow fall on an evergreen tree or a flower grow over several weeks. They hear sounds of birds and leaves falling that we regularly miss. They smell freshbaked bread, feel a cool summer night's breeze and the traffic noises of a busy street. They turn the stress of dying into an opportunity to live.

People who are bedridden and near death feel purpose in simply receiving other's love and prayers. People who are dying encourage so many others to take time to talk, touch, laugh and love. They can bind a family together and leave memories that give their loved ones great strength during a difficult time of mourning. It is a wonderful gift and a purposeful one.

For people who are dying it is often very hard to tell their family and friends what they need and want. It may be difficult to discuss such matters as family conflicts or going on a vacation together. Patience is needed to encourage discussion. Telling a friend that "I need a hug" or asking a family member to go for a long walk to talk about "the good old days" are just two examples of asking to have their needs fulfilled.

Sex depends on the patient's previous experience of having sex during stressful times, the presence of pain and medication, the perception of their ability to live a full and meaningful life, if they have privacy, and how other people treat them. If their physical or mental condition precludes intercourse, a fulfilling and caring intimacy can still happen. A snuggle on the couch, watching a sunset or listening to classical music together can be very intimate and loving.

Patients can choose to make decisions and take control of their lives by finding out more about their illness, how it progresses, what pain and symptom control techniques are available, alternatives to traditional medicine and other relevant information. They should not be afraid to ask for help from a family member or friend.

Patients also need:

To belong to a compassionate family and/or community. When this does not exist, others can help create it in the time left through a support circle or personal friendship.

To have opportunities and encouragement to practice their spirituality.

To have honest and open communication between themselves and their caregivers. They need to express their thoughts, in their ways, be listened to and supported.

Financial security and a safe place to live until their death (preferably in their own home or someone else's home).

Meaningful activities, stimulation, fun, enjoyment, laughter, time with people, meaningful conversations, in typical and familiar settings.

Hope maintained at all times, including encouraging patients to talk about their hopes for their families, work and the world in the future after they have died. They need to have hope about today as they learn to let go of hope for a cure, one more treatment or for a longer life. They need their hope for a peaceful death supported through palliative care so that it is fulfilled as best as possible.

Their differences and similarities addressed including culture, age, gender, history and family background, religion, their experiences with death, social roles, unfinished business, other losses, and personal beliefs and wants.


Their Fears

People may have any of the following fears. These fears may be expressed out loud or thought about quietly in their minds with sentences like:

How will I die? Will there be pain? Will I suffer unbearably? Will I look terrifying to my loved ones?

Will I lose control over my body and my feelings? How will I cope with not knowing what is going to happen to me? I can't stand the pain. I am afraid I am going to be a bad patient. Will I be a coward and disgrace my family and myself?

I don't want to leave the people I love. I don't want them to suffer when I am gone. I don't know how to help them cope with their fears.

I don't want to be a burden to anyone.

I am afraid of dying alone.

I've lived a whole life now. Did my life have any meaning? I was just a mother and secretary all my life or just a father and a carpenter all my life. Was that enough?

Is there a heaven or hell? What happens to my soul after death? I've done bad things ­ what will happen to me?

I can't talk to my family or friends about my dying or death because they won't accept that I am dying. What can I do?

These fears are real and common. People who are afraid have more physical and emotional pain so their fears must be dealt with as early as possible. Dealing with fear is time consuming and energy draining for everyone but is very important. The following are just a few thoughts on dealing with fear. Whatever we do, we must address the fears and try to comfort those who never quite give up those fears.

How someone lives until they die depends on many things, especially their disease and overall physical, emotional and spiritual health. Information about what is typical is very comforting. People do not have to suffer unbearable pain. We have the knowledge and skills to make sure people life relatively comfortably until they die.

Body image is very important because our society values how someone looks. It is not frivolous or 'crazy' to want clean and well-groomed hair, makeup, etc. There may be modifications but the old saying that "if you look good, you feel better" is true for most of us.

Losing control over one's body is a natural consequence of the body slowly stopping its many functions. It happens to all of us when an illness or condition takes time to come to a natural end. Coping with those changes requires a great deal of physical, emotional and spiritual support. Seeing one's own deterioration as a natural consequence helps put it into perspective. Knowing in advance, what may happen will help for some people. The 'signposts' point to the end we will all experience.

Fear of not being able to deal well with the illness and the pain, frightens people. They do not want to disgrace themselves or their families. They need constant reassurance that their illness, their pain and their emotional and spiritual needs will be taken care of quickly and effectively. When this is not possible, they need help in putting their typical reactions into perspective so that they can feel some comfort and pride in how they are dealing with their condition.

· Grieving one's own death is natural. Let your loved one know that. There is the fear of the unknown. The worry about people left behind. Most people have had difficult times in their lives before. Encourage them to use the strengths gained from those experiences to help their loved ones. Talking, holding each other, and looking outward in ways to help others are all proven ways of dealing with the unknown. Whether in war, famine, poverty or death, for centuries, people have returned to these proven techniques.

· Patients, please know that the concept of being a burden to one's family and society because one is ill and dying is only about 50 years old. After World War II, North America and Europe had great wealth and expanded health care services so that most people died in hospitals cared for by people outside the family. Before the war people died at home. The care was not always perfect and the pain was not managed as well as it can be done today. However, there was a natural cycle of care from birth to death within families and communities. Many people who have cared for someone near the end of life understand the difficulties and frustrations involved but will also tell you about the joy, laughter, intimate love and caring that was shared with their loved ones. These gifts are often not possible in a hospital or institution because of all the rules and false beliefs about what is important. What you may perceive as a burden now, can in fact, be a life-defining gift for your loved ones if only you, and they, will work towards that goal. That said, the fear of being a burden to one's family is real and you need to talk about that fear with your loved ones and professional and volunteer care providers.

Many people, especially older women, live alone with family either too busy or too far away to be of much comfort. The fear of dying alone is real because it happens so often. This must be addressed head on with the only answer possible ­ there must be people present at all times when the person who is dying wants them there. It takes planning, asking others for some of their time, and a commitment to meet this fear head on. Support teams or circles (see Chapter 19) are one way of doing that.

At the same time, some people, consciously or unconsciously, prefer to die when their loved ones have left the room. Professionals and volunteers with many years of experience have seen this over and over again. A family may be with the patient, around the clock, for days on end. They leave briefly to shower, get a bite to eat or stretch and while they are away, their loved one dies. The person is usually not alone but with a professional or volunteer or a friend. Their death can be devastating to the family who believes that it is wrong for a person to die 'alone'.

I remind family members how difficult it might be to say goodbye to the people you love most. Sometimes people need to be 'alone' to die. My mother was in a semi-coma during her last two weeks. We had been with her for many weeks at home and finally needed a nurse to come and be with her during the night. During her last few weeks, she experienced her 29th wedding anniversary and my sister's birthday. Shortly after midnight on the day after my sister's birthday, and after I had said goodnight, my father went to my mother to say goodbye and that, if she was ready, she could leave us as we were now ready (unlike four months previously when she was in a coma in the hospital). She died ten minutes after he left her. We spent the following hours with her in her room until her body was taken by the funeral directors.

Whether someone's life has meaning or not is dependent on how we value them when they are dying. Isolated, lonely people, no matter how productive in their lives may find little meaning in their personal history. Someone loved, cared for, respected and listened to can come to understand that each person's life has meaning because each of us has affected the lives of others.

Helping people record their life stories earlier in their illness can be a wonderful heirloom for one's family and friends. Concentrating on the lessons learned through hardships, and the value of relationships in one's life helps family members rejoice in their heritage and cope with their grief.

A fear of the unknown, after death, can be crippling. One's religious and spiritual beliefs are powerful. Sometimes these beliefs are comforting and sometimes they just make the person more frightened. (See Chapter 12 on spirituality for concrete ideas of how you can help.)

Patients, even young children, may accept their death much sooner than their family and friends. This can be very isolating and frightening. Someone in that patient's life needs to ensure that a few accepting people (either other family and friends or professional or volunteer caregivers) are in regular contact with the patient so that they can share in conversations, prayer or activities that provide understanding to the patient. Patients may not have the energy to find such people themselves. Through example, the family and friends who have not accepted that their loved one is dying may slowly come to terms with their own fears and grief.



Labelling Feelings

In order to understand what a patient is going through, doctors, psychologists and others have tried to label our feelings. They have come up with theories and terms like denial, bargaining with God, reconnecting with loved ones, depression, isolation and others. Few discuss the joys and intimate love shared during periods of difficulty.

Labeling feelings can help all of us face the truth about dying. Labels are just words that give us common language. But the words we use may not describe the same feelings. For example, 'denial' of our upcoming death is often defined as bad. Denying our death can make it hard to deal with many of the other fears and feelings we have as well as the fears and feelings of those who love us. On the other hand, denial can be something very powerful in prolonging our lives. Take the example of a woman riddled with cancer who refused to die until her daughter reached 18 years of age. She went against all medical odds and accomplished her goal, living five years longer than anyone expected. Knowing the strength of denial or anger or acceptance can help us talk about what we are doing and why we are doing it. When we discuss our feelings, we need to make sure that the person we are talking to has the same definition of what the words mean otherwise the conversation can be misunderstood.

There is a similar danger in labeling stages of how we are supposed to feel. There has been a popular belief that when someone finds out they are dying that they go through the emotional stages of denial, anger, bargaining with God for a longer life, depression and finally, acceptance. These stages are not true. People do not go from one emotion to the next in a predictable sequence. Nor do they have just negative feelings. They still experience love, joy and hope.

When people believe in stages, they assume that all the patients' emotions stem from the knowledge of their impending death. For example, they may be in a hospital and be very angry that a family member hasn't visited as promised or that the doctor failed to see them today. They may be depressed because a friend at work has had a heart attack. If their television is broken and the repair person doesn't come on time their anger is not because of their illness; they are angry because they can't watch the hockey game. These emotions are related to the things that they normally react to.

A person's reaction when they find out they are dying or a person's reaction when they find out a loved one is dying is based on how they have dealt with difficult situations in the past. The only predictable theory that fits each individual case is that they will go through three specific time periods where their reactions are quite similar to past reactions:

1. At the time they find out the news. Some people deny the news and say there must be a mistake. Others welcome the news as a definite answer to the questions they have had for months about their condition. Others are relieved that their long life is nearly over and they are "going home to God."

2. The period of time between finding out about the terminal illness to just before the person's death. During this period, people experience all of their typical positive and negative emotions. They feel love, anger, happiness, fear, closeness and isolation. It may be a roller coaster changing from moment to moment or their emotions may change gradually. Whatever their feelings, they are real and in need of support through physical, emotional, spiritual and information comforts.

3. Just before someone's death, perhaps only minutes, days or weeks, there may be an acceptance of all of their past, an acceptance of their death and a feeling of connection with all the people they love. Other people may die with feelings of anger, injustice and a complete sense of failure. The range is as endless as is the human population. The only thing that is certain is that people choose how they face death (especially if they have had some time to prepare) and we cannot make them feel a certain way just to please us. Death is not always a peaceful leaving of this life for an adventure in another world. This is hard for loved ones to watch. The best we can do is to be as comforting as possible and to comfort each other during such difficult times.



Children and Dying

This book is too short to allow a detailed account of how children view their own death or the death of a parent, grandparent, sibling or friend. Very young children don't understand what death is about, therefore we need to answer their questions honestly, concisely, and when they come up. Not exposing children to the natural occurrence of death around them will only make it more difficult for them to understand it later.

Children's reaction to death depends on their intellectual and emotional maturity as well as their age level. They need different types of resources to help them than adults do. (Check the References). Obviously a four-year-old child has different concepts of death than a ten-year-old child. Like adults, each child is different and understands and accepts death differently. The younger the child, the more likely she is to take our explanations literally. Imagine the image a child might have when we talk about someone who is dead as "sleeping," or that we have "lost them," or that "Daddy is in heaven looking at us," or that "God has taken her away." These words are meant to comfort a child but they often frighten the child instead.

Rather, honest answers to questions of "Where is Mommy?" such as "I sometimes wonder about that myself," are better. If you have a religious belief in an afterlife, explain it clearly. If you are not sure of your own feelings say: "I'm not sure but I believe...."

Children are more often concerned about being abandoned. Will their parents die and if so, what will happen to them? They need reassurance and love rather than a quick reply not to worry. We can help our children by using the example of the death of a pet or a plant to discuss feelings. Many North American children were introduced to death through public expressions of grief. In the 1960s it was President Kennedy's death. In the 1970s, it was the ongoing death and grief shown on the nightly news during the Vietnam War. In the 1980s it was the crash of the space shuttle Challenger with a teacher on board. In the 1990s the public grief over the death of Mother Teresa and Princess Diana was visible on every television and newspaper front page. These experiences are opportunities to discuss death generally and within one's own family and community.

It is all right to cry with your children and to express your grief. It allows them to share their grief with you. Touching and honest talking can make a real difference. Very intense grief can be frightening to children and must be explained to them. Let them know that you have experienced death and grief before and that the hurt and pain of grieving lessen with time even though the memories of their loved one will not. Explain your feelings. Expect your children to ask the same questions over and over again as they come to understand what death and grief are. Your reassurance and your patience help them see death and grief as natural parts of our lives. If you are uncomfortable talking about these things with your children, find someone else for them to talk with such as an elder, spiritual leader or professional counselor.

For a child who is dying, the suggestions are much the same. Children at a young age are more aware of what is going on around them than we acknowledge. When children are dying at a young age their maturity increases more rapidly. They watch and learn from their parents' and doctors' body language and they also learn from other children who are dying. They need to talk about dying just as adults do.

A three-year old girl with leukemia spent the last year of her life at a children's hospital for treatment. When no further treatment was possible, she was allowed to go home. During that last year at the hospital, she physically clung to her mother who was with her most of the time. After several days at home, the little girl asked her mother to 'pack her bags.' "Where are you going, dear?" asked the mother. "I'm going to Sesame Street and you can't come," was her daughter's answer. This little girl knew she was dying even though she didn't have the words or concepts to express it.

Check with your doctor, support groups and professional counselors to help you and your children understand what is happening and how you can turn the months or years to follow into a memorable time. Children, even when they are dying, need the same things as all children: friends, connection with school, play time, vacations, the occasional junk food, to get into trouble and to be scolded like everyone else. They need to feel normal just as an adult who is dying needs to feel normal and needed. They need respect, their dignity maintained and valued, and they need information suitable to their age. They do not need to be patronized or elevated to sainthood as this takes away from their most valued role ­ a child within their family and community.

You will find from the books in the references that parents often make similar mistakes when their child is dying: spoiling the child, not talking openly enough with their child and their other children, assuming the child thinks a certain way, or trying to protect their children from the truth. When a child is dying, the child, the parents and other family members and friends need to talk about their thoughts, fears and feelings.



Family and Friends

What can I do to help someone who is dying? How do I overcome my fear of saying the wrong thing? Does someone who is dying want to talk about dying? They aren't interested in hearing about my job, the kids and our vacation are they? I'm scared. What do I do?

Death is a topic that few people can talk about openly except in a general philosophical sense during a card game, a fishing trip or after a news story about a terrorist act. People often find it very difficult to talk about dying when they actually know someone who is dying. It has been a social taboo to talk honestly with someone who is dying.

Most of the literature written about death and dying concentrates on the person who is dying. Very little is written about what practical things you can do to help the person dying while helping yourself to feel useful.

The 'right' attitude toward people who are dying is neither that of an indulgent grandmother nor of a detached observer. The best that anyone can do is to care sincerely, be respectful and offer to listen. Sometimes it is the very simple things that make such a difference: a wave from the sidewalk to a person sitting by the window; dropping over an article you thought might be interesting; calling someone up to say there is a good show on the radio right now -- any expression of concern and support.

Sometimes people say or do things that unintentionally hurt the person they care about. If their concern and caring are real then their compassion and love overshadow any errors they make. There are specific things you can do to improve the life of someone who is dying but few are greater than your expression of caring. If you can openly tell the person who is dying that you too, are afraid sometimes and feel angry or lonely, then you open the door to honest communication. You allow the person to choose how much he wants to talk and what he wants to talk about.

A simple example of how two caring people can help each other is to continue to do things you used to do together. You might have to adapt your favorite past times. For example, if the two of you used to go to movies together, you might bring in a home video instead. Such social events provide people with an opportunity to talk about themselves, about their feelings toward movie characters or specific events in the film. They may then feel more comfortable talking about their feelings about illness, dying and death.

Another example is the story of how one person who was dying of cancer had her friend come to visit. The friend was unable to talk about the patient's illness but did express his own fear of cancer. Some people would consider this unsympathetic. After all, the visitor wasn't dying. Yet his need to talk about cancer and his own possible death, allowed the patient to console him, offer him insight and most important, feel useful herself. This was the type of relationship they had always had. Her comforting him, in effect, reinforced her invaluable role as confidant and friend rather than the role of dying patient that other people imposed on her.

One of the rules we think we should follow is that when someone is sick we must talk quietly and solemnly. Others think that only a long list of bad jokes will help the person out of a slump. What is probably best is to combine many emotions together. People need to laugh, to cry, to love, to hope, to express faith but also to be angry. That is the beauty of friendship and companionship; you can listen, without judgment, and let the person express his own needs while you express yours.

See Chapter 14 on Home Care Tips for other specific ideas and examples.



Euthanasia and Assisted Suicide

When most people want to talk about euthanasia, suicide or assisted-suicide, they want people to listen and to understand the reasons for their interest. Like all of us, they want to be loved, supported, listened to, and respected. They may want to discuss euthanasia or assisted suicide because of their fears of the unknown future or how they might die. They may have terrible experiences of watching loved ones suffer horribly before their death and they do not want to have the same experience. When the question comes up, it must be discussed openly and honestly. The request to die should never be answered with, "Oh let's not talk about that" or "I don't believe in euthanasia!"

One of the greatest fears of North Americans is that they will have unbearable pain before they die. Enough health care providers still do not practice modern pain and symptom control. People's experience with other loved ones may be that death is painful. They may also believe that taking narcotics is dangerous or will lead to immediate death or addiction. Pain control techniques today are so advanced that no one has to die in unbearable pain. Proper pain control can reduce or eliminate pain. In extreme cases, a person may need medication for a short, drug-induced sleep to help their body relax. Whatever it takes, no one needs to suffer unbearable, untreated pain. Proper pain control also lets patients remain alert and as active as their physical abilities allow. The more pain control techniques are understood by physicians, the less the cry for euthanasia on these grounds. (See Chapter 8 on pain and symptom control.)

Another real consideration for people who may choose euthanasia is their worry about being an emotional and financial burden to their loved ones. People who are dying worry a great deal about their families. The cost of dying in North America can be very high indeed. Studies have concluded that seventy-five percent of our lifetime medical costs are spent in the last year of our life. In Canada, many of these costs are covered, but not all of them. People caring for loved ones at home may have to quit their jobs or juggle several part-time jobs to fulfill their wish to care for someone at home. Many home care supplies are not covered by insurance. Some people argue that euthanasia allows someone to die before the heavy emotional and financial costs of 'prolonging life' bankrupts their families. This argument reflects our society's inability to deal with this very real problem, and as such, it is one of the saddest arguments for euthanasia It is, nonetheless, a reason why people have suicidal thoughts and must be addressed.

Some people actually plan for this event by saving prescription medication. These people plan to use these drugs to commit suicide if they ever became terminally ill. This practice gives a false confidence in their ability to maintain control over their own lives and deaths. There are no studies to show how many of these people actually try to commit suicide later on. The important fact is that these people want control over their deaths.

The danger in using drugs and other methods to commit suicide is that many people fail in their suicide attempts and are worse off for the effort. Hangings can cause paralysis; failed shootings can cause brain or heart injuries; too little or old medication can cause an irreversible coma; carbon monoxide poisoning can inflict brain damage, and chemical poisoning can ruin internal organs without causing death.

Euthanasia is a subject that can never receive unanimous support either for or against it. People who wish to legalize euthanasia are, on the whole, as respectful of life as those who oppose it. The philosophies on both sides of the debate are very different but there is a common ground; most people involved in this debate want to improve the lives of people who have a terminal illness. The hope is that the debate is helping us to examine our own beliefs while also encouraging us to improve present services for people who have a terminal or life threatening illness.


Chapter 11

Understanding and Dealing with Grief

Thoughts about Grieving

Children's Grief

Elders' Grief

Special Events

We all experience grief from the time we are young children. We all learn from grief. We all help, or hurt, others with their grief depending on how we deal with our own. Grieving is a spiritual and emotional journey that both patients and families experience. How you dealt with past grief is a strong predictor of how you deal with this one.

Simply put, grieving is emotionally, physically and spiritually painful. It opens us up to our deepest feelings of love, anger, joy, rejection, compassion, loneliness, wholeness and fear. We might grieve intensely for weeks, months or for years. Over time our days of grieving turn into hours of grieving and then, perhaps, only minutes of grieving. However, no matter how long our periods of grief, it can be just as intense as the day the person we love died. A song on the radio, a smell of familiar perfume on the street, a dream or a special anniversary can all bring back intense grief. The difference is that it might only last a few seconds or minutes rather than days.

Grieving is a natural process. It is the price we pay for deep love. Sometime the price feels overwhelming. We may have physical symptoms like tightness in our chest or our throats, trouble breathing or a choking sensation. We may feel empty in our stomach and heart. We may want to sleep for days or we cannot sleep well at all. We may not want to eat, become easily distracted and forgetful, and feel anxious or irritable. Some people become depressed, feel isolated or feel overwhelming guilt. These are all fairly typical feelings. As overwhelming as it may seem, we survive, heal somewhat and continue to live. At first it may be very hard just to get out of bed and have breakfast. Over time, we can do more and feel the hurt for shorter periods of time. With effort over many months, and perhaps years, we become stronger for the experience. Later in the chapter, I present some specific ideas that have helped many other people deal with their grief.

We do not wish grief on anyone, yet we all learn from our grief. Grief can make us stronger and can make us better children, spouses, parents, friends and neighbors. Grief can also make us weaker when it overpowers our ability to cope with day-to-day activities over long periods of time.

There is no right or wrong way to grieve unless your grief continues to harm you, and others, long after a loved one has died.

How we grieve depends on our cultural and personal experiences with other grief. Grief may come to us after we lose a job, move to a new home, break up with our first boyfriend or girlfriend. Each time we experience grief we set a pattern of how we deal with future grief. We can change how we grieve over time but it takes a conscious and ongoing effort.

Grieving is often called 'work' and a 'journey'. It takes effort and time to move from the initial grief after someone's death to when the grief is something you can live with in a healthy way; finding new ways to live without the person we miss. At some unique point for you, you can have a new relationship with the person who has died, make new commitments to others and enjoy love in new ways.

You know when your grieving journey is at a more comfortable point when you can miss someone without being sad that they are not there. When we are in the middle of intense grief there is no difference between missing someone and being sad. At some point, you can wish that someone was here with you at a wedding, birth, or special family dinner without feeling sad that they are not there. The memories of them are more comforting than sad. For some people this point comes after several months of grieving. For many of us, however, this point might take a few years. There will probably, always be some times when missing someone and being sad they are not here become one feeling again. At these times, the intensity of grief might be the same as when the person died, but the duration of that intense grief lasts for minutes rather than days.

People who die continue to help the living. Not in material or even mystical ways but because they influenced our lives through the life they lived. The lessons and example given to us by them influence our thoughts and the way we view the world. When we have a hard decision to make we think how they might have handled it. If our relationship with them was mostly positive, we try to do things in similar ways as they did. If our experiences were mostly negative, we use their lessons as examples of what we will not do. No matter our history with the person, they continue to teach us.

To reach that place of greater comfort we must go through difficult and painful events like funeral preparations, cleaning out closets, finding and reading old letters, getting through the bureaucratic paper work of settling the estate and more. Each painful event is part of the healing process although it might not feel very healing at the time.



Thoughts about Grieving

Grieving is a difficult subject to write about in such a short space. In the references there are books listed that deal more specifically with grieving. As well, check with your family physician, hospice or home care program about bereavement support groups and resource centers in your area. Some are offered through hospitals, social work programs, private bereavement counselors, funeral homes or volunteer organizations. Here are just a few points I think are worth mentioning.

There are basically three main phases that one goes through with their grief. There is the time just before and after a death. There is a time at the other end of the line when you can re-invest your energy, love and commitment to others. The time in between can be the longest as you deal with all the ups and downs of starting a new life without a loved one present.

Grieving may begin weeks or months before someone dies. This is called anticipatory grief because we anticipate a life without our loved one. This grief may have its ups and downs as you experience the ups and downs of someone's illness. One day the person may feel quite good and energized so anticipatory grief may be less. If there is a sudden deterioration in their condition, your grief might be greater.

A common occurrence in anticipatory grief happens when a person is near the end of their life and death is expected soon. My mother had cancer throughout her body. One day she went into an unexpected coma from which she was not expected to wake up. For several days, we all prayed for a peaceful end to her life. During this time I went to a funeral home to arrange her funeral so that we would not have to make rush decisions after her death. When I returned from the funeral home I was told that my mother had woken up and wanted to see me. One minute I was praying for her peaceful death and grieving my upcoming loss; the next minute I was praying for her to live longer. Such a roller coaster is painful as it calls into question what we should be praying for and how best we can help each other during such difficult times. My mother lived another three months.

The following tips may help.

Feel your hurt rather than fighting it or masking it with medication or alcohol. If you do not take the time to experience the pain of grief now it will remain inside you until, perhaps, another tragedy overwhelms you. You may see people grieve over the death of a pet with such force and drama that you wonder if they are sane. It may be that they are reliving previous, unresolved grief. Grief needs to be experienced but some people can live their whole lives without going through the complete grief process. Their ability, however, to love fully and live enthusiastically may also be affected.

Experiencing grief may feel like the world is coming to an end. It is physically and emotionally painful. Sharing this feeling with others who understand grief can be helpful but it will not instantly take the pain away. Only time, supportive family and friends and lots of time spent thinking, feeling, talking and reflecting on experiences will work. Some people look inward through prayer or meditation for peace and a bigger perspective of how grief can help them. Others look outward to see how they might help others in the neighborhood, in their spiritual community or through volunteer work.

Knowing that this debilitating sense of loss is normal and that it becomes less difficult to deal with over time may help you to make it through this process as a whole person.

It is not easy for most of us. Some people may harbor real, intense grief for decades. Some people do die of a 'broken heart' after someone they loved beyond words has died. I suspect that my father died of a broken heart even though the death certificate says emphysema and cancer.

The death of a child or the death of a loved one who died because of violence can be the most difficult to deal with for some people. Others may see these people as 'coping very well with day-to-day life'. They may, however, never be able to love and commit themselves to others in the same way as they did before. If they accept help through professional counseling or through their spiritual leaders, they may heal part of this deep wound. Sharing their stories with people who have had similar situations can also be very helpful.

Your emotions may include feelings that you think are unhealthy or abnormal. Some people feel a strong relief that the person has died. If the person had wanted to die or if the family has provided care for a long time, relief is quite a typical feeling. Your life has been on hold for a time and now it can continue in new ways.

Regret and guilt are also common feelings. You wish that you had said or done something before the person died or feel guilty that you did something wrong. Regret and guilt are powerful emotions that take time to heal, if they ever do. The healing comes through understanding that all of us have regrets and feelings of guilt. We can either do something about our feelings or let them simmer. Some people, for example, wished that they had expressed their love more to someone who died. They might express that love at a graveside or through art or music. Or they might use the experience to express their feelings more often with the people still in their lives now.

There may be times, such as at a funeral, a social gathering, or at work when you get a sense of the world being unreal -- almost as if you were watching yourself in a film. The experience of death and dying can be so intense that the only way to cope is to, quite naturally, distance yourself from the feelings for a time. A young boy whose father died in a corporate jet refused to admit that his father had died. Instead, he told people that his father was a spy and was just on a secret mission. Through the prodding of a counselor who was trying to help him understand 'the truth' he finally burst out with: "I know he's dead. I'm just not ready yet." The story/fantasy was his way of making his world unreal for a time until he was ready to deal with his father's death. He was taking care of himself in the best way he knew how. He needed support more than confrontation ­ acceptance more than well-intended truth.

Face the reality of the death. Begin by continuing small daily activities, return to work when you feel ready (although employers and society may only give you five days of bereavement leave ­ we must change this!), continue your relationships with people you are close to, and talk about your feelings when you can.

The reality of death may hit hardest when you begin to clean out the person's closet, collect their things and perhaps, give some of them away. There is no need to do this within the first few days or weeks after someone's death. Take your time. People who have rushed through their home to clear out the person's effects days after a death have told me years later that they wished they had taken more time. Death seems so unreal around the time of a funeral and the days right afterwards. Wait before hurrying to 'tidy things up'. The same advice is true for moving away from a home shared with the person who has died. Again, there is no hurry. If you plan to move, take some time to say goodbye to the memories of that home before creating new memories in a new home.

Remember the good and the bad. The person who died was not an angel or a devil. They were human. Talk to someone about these memories. You may want to repeat over and over again what your feelings are and what memories you have that are important. Find some friends to talk or write to about these feelings. Repetition is important to make your loss real. Tell them what you need and ask if they will help you.

Seek spiritual help. If you rely on books for comfort, then begin to read again. If travel or work are therapeutic then do that. If you need to hide away for a few days to allow yourself to feel depressed, then give yourself that time. Playing a musical instrument or singing vigorously may be therapeutic.

When you feel ready, begin to invest your emotional energy in new relationships or stronger relationships with old friends. It is not a betrayal of the person who has died or an effort to forget him. It is sharing your love again as you did with the person who has died.

Note: Some people talk about different stages of grieving just as they do about stages of dying. People do not go through various 'stages' after any loss. Whether a loved one has died, or people have lost a job or become unable to fulfill a dream, their reactions to each loss are surprisingly alike; the degree of the reaction is different. People do not go through denial, anger, bargaining with God, depression and acceptance, as we once believed. People experience a range of negative and positive emotions. Sometimes these emotions happen all at once, like when you lose a child in a grocery store. You are in a panic running every which way to find them. When you do, your emotions range from anger that they ran away to complete love that they are safe. Grieving is like that­a range of emotions that can move from one to another quickly and back and forth. The only true predictor of how you deal with grief is how you have done it before. If you have learned from previous grief you might do it 'better' this time, but your instincts will be the same.

Write a journal of your feelings or write letters to the person who has died with any thoughts and feelings you feel were not said to the person when they were alive. Writing or recording one's feelings and ideas can be very healing. Writing to a close friend is another wonderful way to get the jumble of thoughts out of your head and onto paper. It helps people to think more clearly.

We all experience grief. For most of us, we have memories of going through very difficult situations and coming out of that experience to continue to enjoy our lives. Even when your body and heart do not feel like those good feelings will return, allow your mind to remember past experiences with grief and the joys and love you have experienced since then. This won't speed up your grieving or relieve the pain. Overcoming past grief, however, will provide that light at the end of the tunnel. There is much love, gratitude and service ahead of you when you are ready.

People who are dying may have different emotions or they may keep denying their illness to the end. People who are grieving may do the same by denying their need to experience grief. At the same time, not all of their anger or depression is caused by their grief. Their life continues and so do normal frustrations with plumbing, rude drivers, and job tensions. If you understand whether your own feelings are from grief or from normal living you can accept the reality of your situation and deal with your stresses more realistically.

When trying to help a friend or family member deal with their grief, it is important to listen to their stories, their feelings and their concerns. You may hear these ideas from them over and over again during months of conversations. At some point, however, perhaps many months after a person's death, just listening to a grieving friend's stories is not enough. People must move beyond their feelings. Sometimes they use us to postpone their inevitable need to move on. We can hold them back by being too supportive. This is a hard distinction to make but it is important. If a friend cannot move on with their life and continues to hurt themselves by wallowing in grief, then, as a friend, you need to help them see what is happening. The only way it may work is to refuse to listen to the old stories without the person also talking about what they are going to do to help themselves work through the grief. This is a most difficult situation to be in but as a friend, you must be the stronger character rather than the excuse. How to know when the time has come to change the type of support you offer? You might ask yourself, "How has my friend's grief changed in six months, if at all? How must it change so that I can continue to be supportive?"



Children's Grief

A child's first experience with the death of a loved one is very difficult. They have no real comparison to make with previous grief. The death of a gold fish or other pet may help them draw some comparisons but the intensity is quite different.

We do not know how to deal with children's grief. It is not part of our education. We are often uncomfortable just talking about death generally, never mind helping a child who has lost someone very important in their lives. There are books, videos and organizations such as The Childhood Cancer Foundation ­ Candlelighters Canada and Bereaved Families of Ontario that have a vast store of information and services that can help. The following information barely touches on some of the major issues.

We often underestimate a child's grief because they do not easily talk about their confusing feelings. They do not know what 'normal' is and may be afraid to admit to feelings of real fear of abandonment, despair, anger, guilt, loss or confusion. Death is difficult to understand at any age. It is about 'forever' and the person never coming back to us. Children need to understand these concepts but that takes time and experience. Talking is not always the way they will learn these ideas. They may lack the maturity or concentration to understand fully what the death of a loved one means to them. Younger children are in the 'here and now' in most of their activities while adults tend to focus 'way back' and 'far ahead'.

Children need your example to understand what are typical feelings and how to deal with them. They need to see the adults in their lives expressing sadness, confusion and uncertainty. They also need to see adults go on with their lives in ways that encourage the child to understand that even in tragedy, one can move forward.

One way to prepare for the death of a loved one is to encourage a child to do special things with that person or to create something special to give to the person. Any positive memories of time spent together or time spent making something for the person can add courage and strength during the grieving process. After a death, a memory book or collection of items can be made to celebrate the life shared with the loved one. For some children, making or choosing something special to include in the casket or to give other family members at the funeral can be comforting.

Many children need the reassurance that they are not at fault for the death. They may remember saying something, like "I wish you were dead," or "I'm going to kill you" as part of a game they were playing or out of anger to the person who died. They may feel that if they had done or said something they could have prevented the death. Understanding how the person really died reassures them that they are not responsible.

Children also worry about themselves. If Grandma or Dad have died, what will happen if the other adults taking care of them die. They may worry about being abandoned and need reassurance that they will always be well cared for in any circumstance. Again, helping them see what really caused the death and that other adults in their life right now do not have a similar disease or condition can help. Reassurance and love are always better than a quick "You don't have to worry dear."

It is not helpful insisting that a child talk about death. However, every question should be answered. Take advantage of opportunities to talk about death. For example, news reports of a death, a neighbor's death, and an event at school or on television may help you discuss the child's feelings. We cannot make it 'okay' for children within days of a death in the family. It will take them many months and years, just as for their parents, to come to terms with all the aspects of someone's death. Do not rush them.

Children are not adults. They need to be children. If a parent has died, the child should not be expected to become the 'man' or 'woman' of the house. The remaining adults may need extra supports, but it should not be the children who provide that adult support. Children can be wonderfully supportive as children but they should not fulfill the role of the adult who has died.

When children ask questions that you have no answer for, say so. "I don't know" is a wonderful phrase because it means that the adult and child can look for answers together. Some questions, of course, have no answers and that is part of life too. Children can often tell when someone has told them something that is untrue, too simplistic or gives a quick answer to keep them from asking more questions. If children feel this happening often, they will shut out the adults and withdraw or act out in frustration or anger.

Children need the security that comes from rituals, rules and structure. They need limits and consistent discipline that tells them they are loved, safe and part of a family that works things out together. If parents are having trouble providing these things during difficult times, they must look for outside help to give their children and themselves comfort and support.

Children have wisdom that is often overlooked. They may want to save items of personal importance from the person who has died. They may want to create a scrapbook of pictures, art work, poems and thoughts. They recognize, intuitively, that collecting memories is a way to deal with grief. Encourage their natural tendencies and ask them to explain why they have chosen certain items over other ones. You may be surprised by the depth of their thinking and comforted by their genuine love.

Children may have temporary periods of needing to hold onto to their parents or a trusted adult for comfort. They might have nightmares or wet their beds. These 'regressions' are just a sign that they need extra caring and time with trusted adults. My grandfather was 91 when he was dying and he spoke of wishing that his mother was there to hold him. We never lose that desire to be safely in the arms of someone we trust. Children express this need more through actions than words and we must pay attention. They also have short attention spans so you may see them laughing and playing soon after a death or at the funeral. Young children may appear to forget that someone they love has died but they are actually just being children. They will come back to their feelings and questions over the months and years ahead. We must be patient and understanding of their different ways of coping with difficult, emotional times.



Elders' Grief

Our elders have experienced grief many times. If they experienced the horrors of war, the depression years, or the death of a child, grandchild or spouse, they have dealt with grief in ways that many people cannot imagine. Their longevity probably means that they also have dealt with the grief of losing some of their physical and mental abilities. Grief is a constant companion for many of them. As they anticipate their own deaths, they deal with the grief of saying goodbye to loved ones left behind.

At the same time, their experiences have given many of them an understanding of grief, of their own responses to grief and how best they can be supported and supportive. Elders have, through longevity and experience, much to teach younger people about coping with the difficulties of life. They can show great empathy to a young mother whose husband has died. They can understand the trauma of their grandchildren as they begin to explore the world of relationships, study and work. That same empathy is possible in reverse as grandchildren, family and friends can empathize with part of their elders' grief when a spouse, friend or family member dies. When my grandfather was dying, he spoke about feeling like an orphan without his mother there to comfort him. He was 91 years old and he missed his mother as I did mine. We have much more in common with our elders than we sometimes realize.

Elders are no more perfect or ideal than younger people. They can be angry, lonely or unkind at times like everyone else. They do, however, offer a wealth of knowledge and skills. This offer is not always accepted by those around them and in North America, we have tended to isolate them from their communities.

In helping an elder deal with grief, it might be best to allow them to 'teach' us about grief from their perspective. In listening to their lessons we might find ways to be most helpful. It is also important to recognize that the person within an older body still feels many of the same emotions that younger people do. A friend of mine was once talking about the old people in the seniors' home where she lived. I asked her how old those people were. "Oh in their seventies or early eighties, I guess," she replied. "Are you old," I asked her. "Heavens no, dear." She was 86 and felt much younger because her interests had not changed very much over the decades. My grandfather still had a glint in his eye when he told us about putting a girl's ponytail in the ink well in 1899. He still had some of the mischievous personality of a 10-year-old boy at 91 years of age.



Special Events

Special holidays or events may trigger difficult emotions. After my mother died I often wished that she was there for Christmas, holidays, birthdays and other special events. It was not until my father died four years later that I understood that my spending so much time wishing my mother was at certain events, meant I did not pay enough attention to my father who was there.

Many people have more difficulty in the days before a special event than the day itself. In our anticipation of a difficult day we actually lessen the effect of the day itself.

Here are a few tips for dealing with special days.

Get extra support from family and friends. If you choose to be alone for that day, purposefully mix feelings of happy memories with sad ones. We need to remember the good and the bad of such events and use these lessons to help us cope. If you over-indulge in food or drink, recognize that you don't want to do that every day or else you will hurt yourself. Feel the emotions that are there. Sob if you need to. Laugh if you want to. There are no rules about what you MUST do, only suggestions about what you might do to help yourself and others that are grieving too.

Make lists if you have trouble around such events remembering simple chores, gifts to buy, places to be on certain days, or cards to mail. On the list, mark off any items that are important to do first. Lists give us some sense of control and satisfaction as well tick off items that we complete.

Some traditions you will want to keep and others you may want to change. You will get lots of free advice from caring family and friends. Go with your instincts as long as they do not hurt others. For example, you may not have liked a certain dish that was prepared for every formal family event. You will not dishonor the person's memory by choosing to cook something else.

Some people spend money to 'take the pain away'. An elaborate vacation, too much shopping or too many dinners away from home will hurt you financially. Don't spend your way through grief as it only adds the grief of financial troubles. You may inherit money after the death of a loved one. Take some time before spending any of it. You have a whole life ahead of you and your loved one is trying to help you by easing your financial burdens.

You may get many invitations to parties, get-togethers, and special events. People may want you to attend to 'take your mind off things' when that is not what you want to do. They may worry that you are too isolated on your own. You need to judge at what point you are ready to socialize. These events are usually not the time or place to talk about your grief so you may not want to attend soon after a death. Instead, you might invite people over for informal visits to chat or ask someone to go for a walk with you. People mean well but you must decide when the time is right. On the other hand, do not isolate yourself from those who care about you. Find other ways to spend time with them. If you do not, they may well stop asking to be with you and your isolation from people who care about you may become permanent.

New rituals can help ease grief. Lighting a candle to honor the life of a loved one is an age-old tradition. Playing favorite music or watching a favorite film can bring back happy memories. These memories may also bring sadness. Feel the emotions that come. Purposely balance the happy and sad feelings you have.

On the anniversary date of the person's death, you might decide to create a new ritual of celebration to honor the person's life and their importance in your life. It might be as simple as a visit to the cemetery or going for a walk in your favorite spot together. It might be reading a special book or writing to loved ones to share the love you had with the person who died.

Feel the feelings at appropriate times. Remember the good and the bad memories. Use what you have learned to help others. At least, that is what so many others do, with perfectly human, mixed results. We can only do the best we can do, day-to-day, month-to-month and year-to-year. What a gift our experiences can be to others.


Chapter 12

Spiritual Aspects of Dying

and Death

Definition

How to Support Each Other Spiritually

Whether facing a terminal or life-threatening illness or dealing with grief, spirituality has been a comfort to people for thousands of years. The belief that we are not alone gives us a sense of reassurance that things will turn out okay. Prayer and meditation give us rituals, routines and strength to face difficult situations. Religious practices give us a sense of belonging to a spiritual community that stands by us.

Spirituality can also be difficult for people who believe that they are unworthy of a peaceful afterlife. Their religious beliefs, or lack of them, may lead them to believe that their death is the beginning of a terrible experience or no experience at all. They need opportunities to share these feelings, fears and beliefs with others who can listen, comfort and share in peaceful prayer or meditation.

It is often hard to put into words what spirituality can and cannot do for people. Sometimes reading biographies of people who have gone through similar situations is helpful and inspiring. Your local library has a collection of these books.



Definition

Spirituality is about the human spirit and our interconnectedness with each other and with God, however we define the creator. Faith describes our specific religious beliefs usually learned in childhood and refined as we continue to try to find the answers to "what do I believe?" Religion is a particular system of faith and worship usually organized by a formal authority such as a church or holy book.

Spirituality is at the heart of the hospice movement. One does not have to have a specific faith to be spiritual. One does have to believe in the connection between all people at all times. There is often a blurring between meeting people's emotional and spiritual needs. Emotions are personal and individual experiences. Spirituality is the connection of all experience based on a faith in God, however one defines God.

A spiritual foundation can lead to even greater emotional support and comfort for people who have a terminal or life-threatening illness. Spirituality and faith can help to answer some difficult questions: "Do I matter?" "Does anyone love me?" "What is my role and purpose in my family, my community and my world?" At other times, spiritual beliefs can help us deal with questions for which there are no 'scientific' answers: "What will happen to me after death?" "Why me?"

Hospice care is about meeting the physical, emotional, spiritual and information needs of people who have a terminal or life-threatening illness. I believe it can only be accomplished to its fullest potential from a spiritual foundation. Dr. Dorothy Ley, a pioneer in Canadian palliative care put it this way:

Spiritual care lies at the heart of hospice. It says we are here. We will be with you in your living and your dying. We will free you from pain and give you the freedom to find your meaning in your life ­ your way. We will comfort you and those you love ­ not always with words, often with a touch or a glance. We will bring you hope ­ not for tomorrow but for this day. We will not leave you. We will watch with you. We will be there.

Spirituality has to do with who we are as people. Religion has to do with how we practice our spirituality, if at all, through various religious beliefs, practices and rituals. I believe we are all spiritual people in the sense that we all have a need to know our lives have value and meaning. We are connected to each other as members of a living community. Most of us share a belief in a power or force greater than ourselves. We may define that force as nature, God or gods, collective human spirit, the Creator or a higher power. The only thing that separates us spiritually is our belief that separateness is possible. Our spirituality is often best developed and expressed in times of great joy or distress.

The following quote from Ram Dass and Paul Gorman's book How Can I Help? is about helping each of us to see the 'whole' person. Not the diseased person, the dying person, or the disabled person. The whole person. The person who has exactly the same physical, emotional and spiritual needs as everyone else.

I've been chronically ill for twelve years. Stroke. Paralysis. That's what I'm dealing with now. I've gone to rehab program after rehab program. I may be one of the most rehabilitated people on the face of the earth. I should be President. I've worked with a lot of people, and I've seen many types and attitudes. People try very hard to help me do my best on my own. They understand the importance of that self-sufficiency, and so do I. They're positive and optimistic. I admire them for their perseverance. My body is broken, but they still work very hard with it. They're very dedicated. I have nothing but respect for them. But I must say this: I have never, ever, met someone who sees me as a whole... Can you understand this? Can you? No one sees me and helps me see myself as being complete, as is. No one really sees how that's true, at the deepest level. Everything else is Band-Aids, you know.

By seeing each other and ourselves as whole, we start to recognize the spiritual connection between us and the care, love and respect we all deserve and need. (See Mr. G's Story in Chapter 4 as an example of this.)



How to Support Each Other Spiritually

Spirituality is not separate from emotional support. They are connected even when we separate them by chapters in a book. The following suggestions incorporate some emotional supports with spiritual supports. The main difference is the underlying attitude that we are all members of the human family. Patients and families have complex relationships. There is not always a strong bond of love. There may be years of conflict, abuse or trauma that separate the person who is dying from some of the people caring for him. Whether our spiritual support of a loved one comes from a sense of love or a sense of service and duty, our support can make a positive difference in the last weeks and months of someone's life.

The following story in Ram Dass & Paul Gorman's How Can I Help? by a non-religious person may explain how spirituality can help us see the power within the idea that we are members of the human family:

I never had any real relation to Christ at all, and I can't say that I did at that moment (of visiting dying father). But what came through to me was a feeling for my father's identity as...like a child of God. That was who he really was, behind the 'distressing disguise'. And it was my real identity too, I felt. I felt a great bond with him that wasn't anything like I'd felt as father and daughter. In a way, this was my father's final gift to me: the chance to see him as something more than my father; the chance to see the common identity of spirit we both shared; the chance to see just how much that makes possible in the way of love and comfort. And I feel I can call on it now with anyone else.

Some tips:

Recognize that you are directly connected to everyone you meet; even people you do not like.

No one can like everyone but everyone can be treated with respect, compassion, excellent medical care, love and a common spirituality.

Help create memories, using humor and creativity and a 'conspiracy of well-meaning' people to help each other. These memories serve people well as they go through the process of living fully until death. For families, these memories are an anchor of love as they go through their grieving process.

For example, a young woman who had recently married was nearing the end of her life. She wanted to have one more special dinner with her husband at her favorite restaurant but could not leave her home. Several friends arranged to pick up her favorite meal from the restaurant and serve the couple in their home. The friends dressed up formally, served the meal quietly as would be done in a fancy restaurant, cleared and washed the dishes and left the couple alone for the rest of the evening. The young woman had a memory of intense love for her husband and for her friends before she died. The husband and friends carry that special evening with them for the rest of their lives.

Relationships are more important than things, work or health. When you feel hurt, joy, anger, happiness, grief or love ­ share these feelings to allow others to help you and maybe to help themselves as well. Sharing your feelings through prayer and meditation is also very comforting.

Near the end of life many people look back and understand that it was the people and relationships in their lives that were most satisfying. It was not the material things they collected or the amount of work they got done. It was the relationships with family, friends, colleagues at work, neighbors and caregivers that were truly important. It is a perceptive family who learns this lesson from someone who is dying to use as new beginning in their own lives ­ lives dedicated to building and strengthening their own relationships with others.

Prayer, meditation or a spiritual bond shared in silence are powerful tools to help us feel connected with each other and to a higher power. Whether one believes in God, in a creator, in the cosmic energy of love or however one describes one's belief in a high order, that belief can provide strength, direction, love and hope. Sharing one's belief with others of similar beliefs can be a powerful source of comfort.

We can express our spirituality through traditional forms like meditation, prayer, religious rituals and sacraments, and through connection with a member of the clergy. Rev. Douglas Graydon of Toronto's Casey House Hospice explains that non-traditional forms of expressing one's spirituality can also be very powerful and comforting. For example, creating personal rituals by bringing together people, places, things and symbols of personal significance is very moving now and as a memory to look back on for strength and comfort. Just as non-traditional weddings may occur at a park's waterfalls or in one's back yard, personal rituals around dying, death and bereavement can be held anywhere and include almost anything of personal significance.

Other forms of non-traditional spiritual expression are seen in people who remember and think about their dreams to search for spiritual meanings, clarity or comforting thoughts. (Note: Some medications suppress dreams.)

Sharing one's life story and experiences with those who are interested is also a meaningful way to share one's spirituality. Sometimes this is done through one-to-one conversations and other times through peer support groups.

Rituals give us a set form of behaviors to follow when we do not know what to do. For example, rituals from one's faith are a way to dramatize the importance of a moment or event. Shared meals, holiday festivities, wedding and funerals are all rituals that help us celebrate life, love and faith. Using them when someone is dying or after their death can structure time and activity during periods of intense emotion and, possibly, chaos. This may also be a time to create new rituals that reflect one's evolving beliefs.

Books, audio, and videotapes can be very spiritually comforting. People's stories of going through similar circumstances can be very helpful and enlightening. Sacred religious books have provided people with perspective, peace and comfort. They may enjoy reading these books or having someone read favorite passages to them.

Providing physical and emotional support from a spiritual perspective means that a massage turns into an intimate sharing of love and faith; a walk in the park becomes a sharing of God's many gifts of beauty and peacefulness. A silent prayer shared together becomes a moment of lasting memories of time spent together.

Dr. Larry Dossey describes in his book Healing Words how prayer and spiritual practices act to influence physical health. His summary of possibilities include:

Adopting health-related behaviors by modifying one's lifestyle to the specific circumstances.

Increasing our social support through participation in spiritually based community rituals.

Encouraging the process of emotional and spiritual expressions and resolutions.

Using faith to change a belief that you are blessed into the comfort of knowing you are blessed.

Experiencing the presence of healers and healing fosters a sense of belonging and support that is healthful (even for people with a terminal or life-threatening illness).

Being the receiver of people's prayers or laying on of hands or other rituals may stimulate an endocrine or immune response that can help you feel better and reduce pain and symptoms.

Preparing physically for special spiritual rituals and events such as feast, meditation or abstentions, may promote your feeling better.

When someone's faith, religious beliefs and rituals are frightening, such fears are not easily reduced or erased. My grandfather's strong religious convictions led him to believe that he would go to hell for swearing, for his unkindnesses and for his 'bad' thoughts. Prayer and faith were not comforting to him. The following thoughts helped him a bit but could not completely erase 90 years of firmly held beliefs.

· Talking about my own faith and beliefs, which were more comforting than his own, calmed him at times. It opened up an intellectual discussion that led to prayers that addressed his specific concerns.

· Talking about research into near death experiences helped identify what other people's experiences were and how this confirmed the most positive and loving images of what happens to people when they die. His own daughter, my mother, had such an experience. He found it was a powerful, comforting image to concentrate on.

· Reminding him of the good he had done through his life, the love of the people around him who were caring for him day and night, helped him remember that his life had meaning and value to both himself and to others. The world was better for his life and that gave him some comfort as well.

The spiritual support of the hospice philosophy of care reminds us all that being there, even from a great distance in prayer and thoughtfulness, is the root of spiritual support that binds us all.

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