GRIEF AND BEREAVEMENT SUPPORT

WHAT WILL WE BE DISCUSSING?

“Death,” is a part of life that must be faced and addressed. Over the following months, we will be discussing a myriad of sensitive and important subjects in the dying process, including signs and symptoms of dying with tips for caregivers. In the last days of life as death approaches, we will discuss the physiological changes including weakness and fatigue. We will look at why the dying stop eating and drinking fluids, and why they appear to withdraw from the world.

We will learn how best to help a terminally ill person, and how best to comfort their loved ones. We will look at the grief process, which begins at the time of diagnosis with the prognosis that the patient has less than six months to live if the illness progress as normal. We will learn about pre-bereavement, and the 13 months grieving phase after the loss. We will discuss Vigils, essential prayers and meaningful funerals/homegoings/memorials that will bring comfort to all family and friends in their time of great sadness.

WHO WILL BE THE MAIN TEACHER?

Our Ex-officio Matriarch, Archbishop Directorate General of the Americas and Acting Archbishop Directorate General of Europe ++ Dr Christine Jane Alexandra ‘Mercy’ Johnson is a Chaplain with the International Federation of Christian Chaplains – Badge # 4226. She has served in Hospice for over twenty years professionally and trains clergy to act as responsible chaplains to hospices, nursing homes, hospitals, and individual families. Dr Johnson has conducted hundreds of funerals and vigils over the years and has a particular sensitivity towards supporting children and adults with special needs who find the death of a loved one especially confusing. Dr Johnson will share her knowledge in order for us all to best learn how to be confident Shepherds in this ministry.

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Sunday 5 May 2019
3rd Sunday of Easter 2019

Collect
Almighty Father,
who in your great mercy gladdened the disciples with the sight of the risen Lord:
give us such knowledge of his presence with us,
that we may be strengthened and sustained by his risen life
and serve you continually in righteousness and truth;
through Jesus Christ your Son our Lord,
who is alive and reigns with you,
in the unity of the Holy Spirit,
one God, now and for ever.

Amen.
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IN SUMMARY
1. Communication about death, as with all communication, is easier when a child feels that he/she has our permission to talk about the subject and believes we are sincerely interested in her/his views and questions. Encourage her/him to communicate by listening attentively, respecting his/her views, and answering her/his questions honestly.
2. Every child is an individual. Communication about death depends upon his/her age and experiences. If young, he/she may view death as temporary and may be more concerned about separation from her/his loved ones than about the death itself.
3. It is not always easy to “Hear” what a child is really asking. Sometimes it may be necessary to respond to a question with a question in order to fully understand the child’s concern.
4. A very young child can absorb only limited amounts of information. Answers need to be brief, simple and repeated when necessary.
5. A child often feels guilty and angry when she/he loses a close family member. She/he needs reassurance that she/he has been, and will continue to be, loved and cared for.
6. A child may need to mourn a deeply felt loss on and off until she/he is in her/his adolescence. She/he needs support and understanding through this grief process to show her/him feelings openly and freely.
7. Whether a child should visit the dying or attend a funeral depends upon his/her age and ability to understand the situation, her/his relationship with the dying or deceased person, and, most important, whether he/she wishes it. A child should never be coerced or made to feel guilty if he/she prefers not to be involved. If he/she is permitted to visit the dying person or attend a funeral, he/she should be prepared in advance for what he/she will hear and see.

A GRIEVING CHILD NEEDS
1. information that is clear and understandable at their developmental level.
2. to be reassured that their basic needs will be met.
3. to be involved in the planning for the funeral and anniversary.
4. to be reassured when grieving by adults is intense
5. help with exploring fantasies about death, the afterlife, and related issues.
6. to be able to have and express their own thoughts and behaviors, especially when different from significant adults.
7. to maintain age-appropriate activities and interests.
8. to receive help with “Magical thinking.”
9. to say goodbye to the deceased.
10. to memorialize the deceased.

BEFORE THE DEATH A CHILD NEEDS
1. help with anticipatory grief.
2. to be given information about the physical, emotional, and mental condition of the terminally ill person and given a choice of visiting or remaining away.
3. to be allowed to care for the dying person.
4. to participate in meaningful ways of saying goodbye.
5. to have schedules and boundaries as close to normal as possible.
6. to receive affection and be listened to.

SIGNAL FOR ATTENTION FROM A GRIEVING CHILD
1. Marked change in school performance.
2. Poor grades despite trying very hard.
3. A lot of worry or anxiety manifested by refusing to go to school, go to sleep, or take part in age-appropriate activities.
4. Not talking about the person or death. Physically avoiding mention of the deceased.
5. Frequent angry outbursts of anger expressed in destructive ways.
6. Hyperactive activities, fidgeting, constant movement beyond regular playing.
7. Persistent anxiety or phobias.
8. Accent proneness, possibly self-punishment or call for attention.
9. Persistent nightmares or sleep disorders.
10. Stealing, promiscuity, vandalism, illegal behavior.
11. Persistent disobedience or aggression (longer than six months) and violations of the rights of others.
12. Opposition to authority figures.
13. Frequent unexplained temper tantrums.
14. Social withdrawal.
15. Alcohol or other drug abuse.
16. Inability to cope with problems and daily activities.
17. Many complaints of physical ailments.
18. Persistent depression accompanied by poor appetite, sleep difficulties, and thoughts of death.
19. Long term absence of emotion.
20. Frequent panic attacks.
21. Persistent symptoms of the deceased.

CHARACTERISTICS OF AGE GROUPS (TO BE USED ONLY AS A GENERAL GUIDE)

INFANTS – 2 YEARS OLD:
 Will sense a loss
 Will pick up on the grief of a parent or caretaker.
 May change eating, sleeping, toilet habits.

2-6 YEARS OLD:
 Family is the center of a child’s world.
 The confident family will care for her/his needs.
 Plays grown-ups, imitates family.
 Functions of a day-to-day basis.
 No understanding of time or death.
 Cannot imagine life without mum or dad.
 Picks up on nonverbal communication.
 Thinks dead people continue to do things (eat, drink, go to the bathroom,) but only in the sky.
 Thinks if you walk on the grave the person feels it.
 Magical thinking.
 You wish it, it happens (bring the dead back or wishing someone was dead.)
 Death brings confusion, guilt (magically thought someone dead.)
 A tendency to connect things which are not related.

6-9 YEARS OLD:
 Personifies death: A person, monster who takes you away.
 Sometimes a violent thing.
 Still has magical thinking, yet begins to see death as final, but outside the realm of the child’s realistic mind.
 Fails to accept that death will happen to them – or to anyone (although begins to suspect it will.)
 Fears that death is something contagious.
 Confusion of wording (soul/sole, dead body, living soul.)
 Develops an interest in the causes of death (violence, old age, sickness.)

9-12 YEARS OLD:
 May see death as punishment for poor behavior.
 Develops morality – a strong sense of good and bad behavior.
 Still some magical thinking.
 Needs reassurance that wishes do not kill.
 Begins an interest in biological factors of death.
 Theorizes: people die to make room for new people.
 Asks more about “what happened.”
 Concerns about ritual, burying.
 Questions relationship changes caused by death, life changes.
 Worries about who provides and cares for them
 May regress to an earlier stage.
 Interested in spiritual aspects of death.

TEENAGERS:
 Views death as inevitable, universal, irreversible.
 Cognitive skills developed.
 Thinks like an adult.
 Questions the meaning of life if it ends in death.
 Sees the aging process leading to death.
 Sees self an invincible – it will not happen to me.
 Sees death as a natural enemy.
 Need for adult guidance (grief process, coping skills.) Needs someone to listen; to talk with.
 May feel guilt, anger, even some responsibility for the death that occurred.
 Not sure how to handle own emotions (public and private.)
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SENDING CHILDREN AWAY FROM HOME
The loss or impending loss of a close family member taxes our emotional and physical reserves to the extreme, and it becomes difficult to meet everyday responsibilities. It is even more difficult to care for youngsters, and sometimes we are tempted to send our children to visit relatives or friends until we can “pull ourselves together.” Keeping children at a distance may also be a way to avoid talking to them about death.

Careful consideration should be given before children are sent away, for this is when they need the comfort of familiar surroundings and close contact with family members. They need time to adjust to the loss, and, if feasible, should be prepared in advance of the death. Even young children who do not understand the full implications of death are aware that something serious is going on. Sending the, away may increase their fears about separation from their loved ones. Having familiar and caring people nearby before and after the death can reduce the fear of abandonment or other stresses children may experience.

On the other hand, we do not want to keep our children under lock and key as a way of dealing with our own anxieties and needs. Our children should be given permission to play with friends or visit relatives if they wish.

CHILDREN ALSO MOURN
Mourning is the recognition of a deeply felt loss and a process we all must go through before we are able to pick up the pieces and go on living fully and normally again, Mourning heals. By being open with our sorrow and tears, we show our children that it is appropriate to feel sad and to cry. The expression of grief should never be equated with weakness. Our sons, as well as our daughters, should be allowed to shed their tears and express their feelings when they need.

A child may show immediate grief, and we may think that he/she is unaffected by the loss. Some mental health experts believe that children are not mature enough to work through a deeply felt loss until they are adolescents. Because of this, they say, children are apt to express their sadness on and off over a long period of time and often at unexpected moments. Other family members may find it painful to have old wounds probed repeatedly, but children need patience, understanding, and support to complete the “grief work.”
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SHOULD CHILDREN VISIT THE DYING?
Most fatally ill people are hospitalized, and, as a rule, hospitals for not extend visiting privileges to children. But this is beginning to change as hospital staff recognizes the valued that can be derived from having children visit. Whether or not a particular child should visit someone who is dying depends on the child, the patients, and the situation. A child who is old enough to understand what is happening probably should be permitted to visit someone who has played an important role in her/his life, providing that both she/he and the dying person wish it.

Under the right circumstances, contact with the dying can be useful to a youngster. It may diminish the mystery of death and help her/him develop more realistic ways of coping. It can open avenues of communication, reducing the loneliness often felt by both the living and the dying. The opportunity to bring a moment of happiness to a dying individual might help the child feel useful and less helpless.
If a child is to visit someone who is dying, she/he needs to be thoroughly prepared for what she/he will hear and see. The condition and appearance of the patient should be described, and any sickroom equipment she/he will see would be explained in advance. Also, it may be wise to remind her/him that although she/he is visiting someone who is dying, most hospital patients get well.

If visits are not feasible, telephone calls may be a beneficial substitute. The sound of a child’s voice could be good medicine for a hospitalized relative, providing the child wishes to call and the patient is well enough to receive it.

Under no circumstances should a child be coerced or made to feel guilty if she/he chooses not to call or visit the dying or if her/his contacts are brief.

SHOULD CHILDREN ATTEND FUNERALS?
Funerals serve a valuable function. Every society has some form of ceremony to help the living acknowledge, accept and cope with the loss of a loved one. Whether or not a particular child should be included again depends on the child and the situation. If the child is old enough to understand and wants to participate, being included may help her/him accept the reality of death while in the supportive company of family and friends.

If a child is to attend a funeral, she/he should be prepared for what she/he will hear and see before, during, and after the services. She should be aware that on such a sad occasion people will be expressing their bereavement in various ways and that some will be crying. If possible, someone who is calm and can give serious consideration and answers to questions she/he may ask should accompany the child. If she/he prefers not to attend the funeral, she/he must not be coerced or made to feel guilty.
When I conduct funerals, I often invite children to read poems or to say a few words about their loved one. I typically knee or squat on the floor next to them as a sign of encouragement. At the graveside, I always take the children to see some of the gravestones and rather than pointing out the grim side of this, I encourage them to read the names and dates upon the headstones. I then discuss with them what a wonderful life that person must have experienced.

This has always helped children to lose their fear of a graveyard appearing frightful at first glance. Many older children have watched terrifying scenes in movies and on TV and oftentimes arrive with a pre-conceived notion that somebody is going to rise out of the grave to haunt them. By remaining calm and upbeat, I strive to squash these movie images and utilize the funeral to talk about life, family and God’s loving promises. Where we discover a war memorial, I often speak to them about courage and service, which gives them a new perspective on military sacrifice.
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DEATH IN THE FAMILY – SOME CHILDREN’S REACTIONS
Studies have shown that when children experience the death of a close relative, such as a bother, sister, or parent, they often feel guilty. While most of us experience some guilt when we lose a loved one, young children have difficulty understanding cause-and-effect relationships. They think that in some way they caused the death; maybe their angry thoughts caused the person to die. Or they may view death as a punishment. “Mummy died and left me because I was bad.” Children may be helped to cope with guilt by a reassurance that they have always been loved and still are. It also may help to explain the circumstances of the death. The notion that death is a form of punishment should never be reinforced.

The death of a close relative also arouses feelings of anger in both adults and children. We feel angry with the person who died for causing us so much pain and sorrow or for leaving us alone to cope with life. We feel angry at the doctors and nurses who could not save our loved one, and we feel angry at ourselves for being unable to prevent the death.

Children are more apt to express their feelings openly, especially when they’ve lost someone on whom they depended for love and care. It is difficult enough to hear anger directed toward the dead and even more so when it is expressed in what appears to be selfish concerns. But anger is part of grief, and we can help children by accepting their feelings and by not scolding them if they express anger or fear. Children need to be reassured that they will be cared for.

Some children turn their anger inward and become depressed or develop physical symptoms. If this behavior persists over several months, professional help may be needed.

AFTER A CHILD’S DEATH
The death of a child is particularly tragic and may create special pitfalls for families. As parents, we must share our grief with our surviving children, for they too will have grief to share, but we must try not to burden them with unrealistic expectations and concerns. For example, there is a tendency to idealize the dead, and we must take care not to make comparisons that could lead to feelings of unworthiness and increase the guilt of surviving children.
It is also natural to deal with grief by turning our attention to the living. It is understandable that the loss of a child may lead to too much worry about the welfare of our other children. However, we must resist any tendencies to overprotect them or smother their efforts to grow independent, and we must encourage them not to over-identify with or try to replace the lost child. Each child must feel worthy in his or her own right and must be free to live out his or her life in their own way.
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RELIGION AND DEATH
Religion is a prime source of strength and sustenance to many people when they are dealing with death. But if religion has not played an important role in the family’s life before death, a child may be confused or frightened by the sudden introduction of religious explanations or references. Children tend to hear words literally, and religious experiences that may comfort an adult may unsettle a child. For example, the explanation, “Baby brother is with God now,” or “It is God’s will,” could be frightening rather than reassuring to the young child who may worry that God might decide to come and get her just as He did baby brother.

Also, mixed messages are confusing, deepening apprehensions and misunderstandings children may have about death. A statement such as “Jimmy is happy now that he is in Heaven with the angles,” when coupled with obvious and intense grief, can leave them not knowing which to trust – what they see or what they hear. They may wonder why everyone is so unhappy if Jimmy is happy. They need to hear something about the sadness we fell about losing Jimmy as we know and experienced him, in addition to our expressions of religious faith.

Regardless of how strong or comforting religious beliefs may be, death means the loss of the living being, the absence of a physical presence. It is a time of sadness and mourning. It is important to help children accept the realities of death – the loss and grief. Attempts to protect children deny them opportunities to share their feelings and receive needed support. Sharing feelings helps. Sharing religious beliefs also help if done with sensitivity to how children are perceiving and understanding what is happening and what is being said. It is important to check with them, to find out how they are hearing and seeing events around them.

THE UNEMOTIONAL OPPORTUNITY
It is usually easier to talk about death when we are less emotionally involved. Taking opportunities to talk to children about dead flowers, trees, insects, or birds may be helpful. Some young children show intense curiosity about dead insects and animals. They may wish to examine them closely or they may ask detailed questions about what happens physically to dead things. Although this interest may seem repulsive or morbid to us, it is a way of learning about death. Children should not be made to feel guilty or embarrassed about their curiosity. Their interest may provide an opportunity to explain for the first time that all living things die and, in this way, make room for new living things to take their place on earth.

This kind of answer may satisfy for the moment, or it may lead to questions about our own mortality. Honest, unemotional, and simple answers are called for. If we are talking to a very young child, we must remember that she can absorb only limited amounts of information at a time. She may listen seriously to our answers and then skip happily away saying, “Well, I’m never going to die.” We should not feel compelled to contradict her or think that our efforts have been wasted. We have made it easier for her to come back again when she needs more answers.
Other opportunities to discuss death with children occur when prominent persons die and their deaths, funerals, and the public’s reaction receives a great deal of media coverage, When a death is newsworthy, children are bound to see something about it on television or hear it mentioned n the radio, in school, or in our conversations. In any case, it can rarely be ignored and, in fact, should not be. It is a natural time to give them needed information or to clarify any misconceptions they may have about death.

If the death is violent – a murder or assassination – it is probably a good idea to say something to reassure children about safety. The media tends to play up violence under ordinary circumstances, and the violent death of a well-known or admired person may stimulate their fears or confirm distorted perceptions they may have about the dangers around them. They may become worried that “bad” people or that the “bad feelings” in people cannot be controlled. They may need to hear that most people act responsibly and do not go around killing each other, even though everyone feels bad or angry at some time.
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TALKING TO CHILDREN ABOUT DEATH – PART TWO
DEVELOPMENTAL STAGES

Studies show that children go through a series of stages in their understanding of death. For example, preschool children usually see death as reversible, temporary, and impersonal. Watching cartoon characters on television miraculously rise up whole again after having been crushed or blown apart tends to reinforce this notion.
Between the ages of five and nine, most children are beginning to realize that death is final and that all living things die, but still they do not see death as personal. They harbor the idea that somehow, they can escape through their own ingenuity and efforts. During this stage, children also tend to personify death. They may associate death with a skeleton or the angel of death, and some children have nightmares about them.

From nine or ten through adolescence, children begin to comprehend fully that death is irreversible, that all living things die, and they too will die someday. Some begin to work on developing philosophical views of life and death. Teenagers, especially, often become intrigued with seeking the meaning of life. Some youngsters react to their fear of death of taking unnecessary chances with their lives. In confronting death, they are trying to overcome their fears by confirming their “control” over mortality.

THE INDIVIDUAL EXPERIENCE
While it can be helpful to know that children go through a series of stages in the way they perceive death, it is important to remember that, as in all growth processes, children develop at individual rates. It is equally important to keep in mind that all children experience life uniquely and have their own personal ways of expressing and handling feelings. Some children ask questions about death as early as three years of age. Others may outwardly appear to be unconcerned about the death of a grandparent but may react strongly to the death of a pet. Some may never mention death but act out their fantasies in their play; they may pretend that a toy or pet is dying and express their feelings and thoughts in their make-believe game, or they may play “death games” with friends, taking turns dying or developing funeral rituals.
No matter how children cope with death or express their feelings, they need sympathetic and nonjudgmental responses from adults. Careful listening and watching are important ways to learn how to respond appropriately to a child’s needs.

THE CHALLENGE OF TALKING TO A YOUNG CHILD

Communicating with preschoolers or young school-age children about any subject can be challenging. They need brief and simple explanations. Long lectures or complicated responses to their questions will probably bore or confuse them and should be avoided. Using concrete and familiar examples may help.
Explaining to children is easier if you approach it from the angle of the absence of familiar life functions – when people die, they do not breathe, eat, talk, think, or feel any more; when dogs die, they do not bark or un anymore; dead flowers do not grow or blossom any more.

A child may ask questions immediately or may respond with a thoughtful silence and come back later to ask questions. Each question deserves a simple and relevant answer. Checking to see if a child has understood what has been said is critical; youngsters sometimes confuse what they hear. Also, children learn through repetition, and they may need to hear the same questions answered repeatedly. As time passes and children have new experiences, they will need further clarification and sharing of ideas and feelings.

It may take time for a child to understand fully the ramifications of death and its emotional implications. A child who knows that Uncle Ed has died may still ask why Aunt Susan is crying. The child needs an answer. ‘Aunt Susan is crying because she is sad that Uncle Ed has died. She misses him very much. We all feel sad when someone we care about dies.”

There are also times when we have difficulty ‘hearing” what children are asking us. A question that may seem shockingly insensitive to an adult may be a child’s request for reassurance. For instance, a question such as, “When will you die?” needs to be heard with the realization that the young child perceives death as temporary. While the finality of death is not fully understood, a child may realize that death means separation, and separation from parents and the loss of care involved is frightening. Being cared for is a realistic and practical concern, and a child needs to be reassured.

Possibly the best way to answer such a question is by asking a clarifying question in return; “Are you worried that I won’t be here to take care of you?” If that is the case, the reassuring and appropriate answer would be something like, “I don’t expect to die for a long time. I expect to be here to take care of you as long as you need me, but if Mummy and daddy did die, there are lots of people to take care of you. There’s Aunt Ellen and Uncle John or Grandma.”

Other problems can arise from children’s misconceptions about death. Some children confuse death with sleep, particularly if they hear adults refer to death with one of the many euphemisms for sleep – “Eternal rest,” “Rest in peace.”

As a result of the confusion, a child may become afraid of going to bed or taking naps. Grandma went “to sleep” and hasn’t awoken yet. Maybe I won’t wake up either.
Similarly, if children are told that someone who died “went away,” brief separations may begin to worry them. Grandpa “went away” and hasn’t come back yet. Maybe Mummy won’t come back from the shops or from work.

Therefore, it is important to avoid such words as “sleep,” “rest,” or “went away” when talking to children about death.
Telling children that sickness was the cause of death can also create problems if the truth is not tempered with reassurance. Preschoolers cannot differentiate between temporary and fatal illness, and minor ailments may begin to cause them unnecessary concern. When talking to a child about someone who has died as a result of an illness, it might be helpful to explain that only very serious illness may cause death and that although we all get sick sometimes, we usually get better again.

Another generalization we often make unthinkingly is relating to old age. Statements such as, “Only old people die,” or “Aunt Hannah died because she was old,” can lead to distrust when a child eventually learns that young people die, too. It might be better to say something like, “Aunt Hannah lived a long time before she died. Most people live a long time, but some don’t. I expect you and I will.”
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TALKING TO CHILDREN ABOUT DEATH – PART ONE
If you are concerned about discussing death with your children, you are not alone. Many of us hesitate to talk about death, particularly with youngsters. But death is an inescapable fact of life. We must deal with it and so must our children; if we are to help them, we must let them know it is okay to talk about it.

By talking to our children about death, we may discover what they know and do not know – if they have misconceptions, fears, or worries. We can then help them by providing needed information, comfort, and understanding. Talk does not solve all problems, but without talk, we are even more limited in our ability to help.
What we say about death to our children, or when we say it, will depend on their ages and experiences. It will also depend on our own experiences, beliefs, feelings, and the situations we find ourselves in, for each situation we face is somewhat different. Some discussions about death may be stimulated by a news report or a television program and take place in a relatively unemotional atmosphere; other talks may result from a family crisis and be charged with emotions.

This article cannot possibly deal with every situation. It does provide some general information which may be helpful – information which may be adapted to meet individual needs.

CHILDREN ARE AWARE
Long before we realize it, children become aware of death. They see dead birds, insects, and animals lying by the road. They may see death at least once a day on television. They hear about it in fairy tales and act it out in their play. Death is a part of life, and children, at some level, are aware of it.

If we permit children to talk to us about death, we can give them needed information, prepare them for a crisis, and help them when they are upset. We can encourage their communication by showing interest in and respect for what they have to say. We can also make it easier for them to talk to us if we are open, honest, and comfortable with our own feelings – often easier said than done. Perhaps we can make it easier for ourselves and our children if we take a closer look at some of the problems that might make communication difficult.

COMMUNICATION BARRIERS
Many of us are inclined not to talk about things that upset us. We try to put a lid on our own feelings and hope that saying nothing will be for the best. But not talking about something does not mean we are not communicating. Children are great observers. They read messages on our faces and in the way we walk or hold hands. We express ourselves by what we do, by what we say, and by what we do not say.

When we avoid talking about something that is obviously upsetting, children often hesitate to bring up the subject or ask questions about it. To a child, avoidance can be a message- “If Mommy and Daddy can’t talk about it, it really must be bad, so I better not talk about it either.” In effect, instead of protecting our children by avoiding talk, we sometimes cause them more worry and keep them from telling us how they feel.

On the other hand, it also is not wise to confront children with information that they may not yet understand or want to know. As with any sensitive subject, we must communicate – a balance that lies somewhere between avoidance and confrontation, a balance that is not easy to achieve.

It involves:
o Trying to be sensitive to their desire to communicate when they are ready.
o Trying not to put up barriers that may inhibit their attempts to communicate.
o Offering them honest explanations when we are obviously upset.
o Listening to and accepting their feelings.
o Not putting off their questions by telling them they are too young.
o Trying to find brief and simple answers that are appropriate to their questions; answers that they can understand and that do not overwhelm them with too many words.
Perhaps most difficult of all, it involves examining our own feelings and beliefs so that we can talk to them as naturally as possible when the opportunities arise.

NOT HAVING ALL THE ANSWERS
When talking with children, many of us feel uncomfortable if we do not have all the answers. Young children seem to expect parents to be all-knowing – even about death. But death, the one certainty in all life, is life’s greatest uncertainty. Coming to terms with death can be a lifelong process. We may find different answers at different stages of our lives, or we may always feel a sense of uncertainty and fear. If we have unresolved fears and questions, we may wonder how to provide comforting answers for our children.

While not all our answers may be comforting, we can share what we truly believe. Where we have doubts, an honest, “I just don’t know the answer to that one,” may be more comforting than an explanation which we do not quite believe. Children usually sense our doubt. White lies, no matter how well intended, can create uneasiness and distrust. Besides, sooner, or later, our children will learn that we are not all knowing, and maybe we can make that discovery easier for them if we calmly matter-of-factly tell them we do not have all the answers. Our non-defensive and accepting attitude may help them feel better about not knowing everything also.

It may help to tell our children that different people believe different things and that not everyone believes as we do, e.g., some people believe in an afterlife; some do not. By indicating our acceptance and respect for other’s beliefs, we may make it easier for our children to chose beliefs different from our own but more comforting to them.

OVERCOMING THE TABOOS
Death is a taboo subject, and even those who hold strong beliefs may avoid talking about it. Once death was an integral part of family life. People died at home, surrounded by loved ones. Adults and children experienced death together, mourned together, and comforted each other.

Today death is lonelier. Most people die in hospitals and nursing homes where they receive the extensive nursing and medical care they need. Their loved ones have less opportunity to be with them and often miss sharing their last moments of life. The living has become isolated from the dying; consequently, death has taken on added mystery and, for some, added fear.

Many people are beginning to recognize that treating death as a taboo does a disservice to both the dying and the living, adding to loneliness, anxiety, and stress for all. Efforts are underway to increase knowledge and communication about death as a means of overcoming the taboo. Scientists are studying the dying to help the living better understand how dying individuals experience their approaching deaths.

Children’s perceptions also are being studied for a better understanding of how they think about death. Researchers have found that two factors seem to influence children’s conception of death – their developmental stages and their experiences (their environments, ethnic, religious, and cultural backgrounds, and their personal way of seeing things.)

We will discuss that in part two.
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STAGES OF THE DYING PROCESS AND SUGGESTIONS
– Always consult a medical professional -

EARLY STAGE

WHAT YOU SEE

o A decrease in both eating and drinking which may last from days to weeks.
o Less interest in food; eating may become more of a burden than pleasure.
o Occasional choking on fluids.
o Feeling “full” quickly.

WHAT IS HAPPENING

o The body is conserving energy and requires less nourishment.
o This natural process of shutting down hunger does not cause pain or suffering.
o IV fluids and artificial feeding at this time of life cause physical distress in the body and will not prevent death.

WHAT YOU CAN DO TO HELP
o Moisten the patient’s mouth with swabs frequently.
o Offer sips of fluid or chips of ice.
o Offer bits of food if desired.
o Follow the patient’s wishes about taking food and fluids.

MIDDLE STAGE

WHAT YOU SEE

o Changes in physical appearance may last a few hours or days.
o Patients will respond less and less to you and his/her surroundings.
o Eventually the patient is completely unable to speak or move.

WHAT IS HAPPENING

o Often the patient’s hands and feet may feel cool and may darken in color.
o The circulation is slowing down, and the blood is being reserved for the major internal organs.
o The patient is preparing for release by detaching from surroundings and relationships.
o This is a physical response to the dying process.

WHAT YOU CAN DO TO HELP

o Offer to remove blankets or a sheet as the patient’s circulation changes.
o Do not use electric blankets or heating pads. The patient cannot judge well if they are too hot.
o Assume that the patient can hear everything.
o Say your name.
o Talk softly.
o Touch gently but only if the patient likes to be touched.

LAST STAGE

In the hours to minutes before death physical care of the body is still important but focus moves from fixing the patient to keeping them comfortable. Circulation has been slowing down, which makes the skin more susceptible to breakdown, which is also known as bedsores or pressure sores. Up to this point, bedsores may have taken days to appear, but now they are hours and can become severe if left.

WHAT YOU SEE

o Intermittent disorientation and restlessness may occur in most patients, which may increase in the last days.
o You will notice a gradual decrease in the patient’s urine output. If the patient has a Foley catheter, the urine may appear very dark.
o The bowel movements may stop altogether, or the patient may become incontinent during the last few days.
o Breathing becomes more irregular.
o Breathing may be shallow and have long pauses, which become more frequent and longer duration as death approaches, especially during the last few days. This is sometimes called Cheyne-Stokes respiration.
o Increasing sounds of congestion in the chest and a rattle in the throat may be heard during the last hours.
o Breathing is reduced to long periods of apnea.

WHAT IS HAPPENING

o As the circulation decreases, kidneys and bowel function may be reduced.
o Muscles may relax causing incontinence for the patient.
o Circulation of blood to the internal organs, including the heart and lungs, will decrease.
o Throat muscles will begin to relax, and the lungs will lose their ability to clear fluids.

WHAT YOU CAN DO TO HELP

o Do not ask questions which require answers.
o Moving the patient should only be done if comfortable and to avoid bedsores.
o You may find prayers or meditation helpful at this time.
o Touch gently but only if the patient likes to touched.
o Talk reassuringly.
o Remain calm.
o Medication may be needed for restlessness.
o The patient may need underbody pads.
o The patient may need diapers.
o Let caregivers know when pads or diapers are soiled and need changing.
o Elevate the head of the bed or use pillows to elevate the patient’s head.
o Turn the patient on his or her side.
o O2 does not help at this stage.
o Medications will be useful.
o Speak respectfully. Although the patient may not be responsive to you, he or she may still hear you.
o Mouth care increases comfort.

When a baby is about to be born into this world the first thing, we see most often is the top of the head, the crowning. This signals the body will soon follow. The “Crowning” that signals the birthing into the other world is a facial grimace.

Breathing has become slow, six to eight breaths per minute; each breath looks like a fish trying to breathe out of the water with their mouth open and gaping. Now there is a slight movement of the head, the face shows a frown or grimace, the arm and shoulder may move.

Occasionally the movement is more dramatic with a fling of the arm or leg or the patient sits up in bed. Most of the time there is a simple movement of the face and head. This is the sign that delivery is almost complete. Following the grimace, there will be one, two or three long spaced our breaths, just a release of the air from the lungs and energy from the body.

When you see the grimace call anyone to the bedside who isn’t already there to say the last goodbye. Rest your fingers gently in the hollow between the neck and the collarbone. You may be able to feel the tension leave the body and know when there are no more breaths.
When the patient has taken their last breath, you will need to give yourself and others present the chance to reconcile with what has just occurred. At this time words are not particularly helpful; an arm to lean on or a shoulder to cry in says more than any words.
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WHAT TO EMBRACE AND AVOID IN RELATING TO A DYING PERSON
Hospice care for the terminally ill emphasizes helping them to die as comfortably as possible and with a sense of control and dignity. The tasks involved in meeting these goals are not always easy. Some people will exhaust one’s emotional and physical energies, others may have needs and demands that we cannot meet, and still, others may lead us through the process with courage and insight. The following are some suggestions for working with your loved one and for remaining healthy as caregivers.

EMBRACE

 Explore your own feelings about aging, death, and dying. The person who is uncomfortable with these issues is less likely to be effective in assisting the person who is dying.
 Recognize the individuality of each person’s death and each family members’ experience of this. Dying has as many styles as living. Some people will take the opportunity to adapt along the way, while others do not.
 Find a balance between practical goals of “helping someone in need” and the human goal of “sharing the dying experience.”
 Be ready to accept the variety of feelings expressed by the dying person. Allow the person to grieve for his/her own death and other losses.
 Listen. Be aware of cues and signals individuals send out. Be prepared to discuss the dying person’s concerns openly and honestly.
 Be patient and allow time to think and express feelings, concerns, and fears.
 Give the person the opportunity to live as fully and independently as possible up to the moment of death. Help the person to define and clarify the realities of day-to-day existence: What are the things she/he can do? What are the things she/he cannot do?
 Make continued human contact available and rewarding; however, at the same time, recognize when someone needs time alone.
 Spend time together. Families often need support in coping with a dying person and resolving conflicts which may exist between them and the dying person.
 Grant your loved one the right to decision-making and to exercise some control over the situation. The person who is a participant in decision making is often better able to yield control to others as his/her condition deteriorates.
 Help the dying person to retain a sense of dignity and self-worth.
 Use touch. This often relieves the fear of being untouchable and is an effective nonverbal way of communicating solace care and comfort. ‘Understand that in any dying person regressive behavior may occur. Family and friends may also need help to understand and cope with such behavior.
 Encourage life-review. Reinforce the strengths of the dying person’s family members. This process aids in the resolution of old as well as recent conflicts and adds to a sense of accomplishment or completion.
 Reassure the dying person that his/her fears are natural and that you and others are there to listen and to help wherever possible. There are medications and therapies available which can address and typically alleviate many of the symptoms faced by a dying person.
 Be prepared for normal expressions of anger, despair, and hostility, either overt or subtle. If prepared for such reactions, it is easier to accept them and to avoid a similar response.

AVOID

 Do not expect the dying person to conform to your standards and expectations regarding dying. Keep in mind what is important to the person.
 Try not to force a dying person through the so-called “stages” of grief dying.
 Avoid becoming too preoccupied with how you are coming across to the person. Such preoccupation can prevent you from being “human” and natural in your caring.
 Never force your feelings on the dying person.
 Try not to exclude the dying person from what is going on in the home or outside.
 Never desert the dying person. Even the comatose individual is often more aware of his/her surroundings than others realize.
 Avoid treating the dying person as socially dead, or as an unthinking, unfeeling object. An example of treating a person as such is talking about the individual rather than to him/her even though he/she is capable of hearing and understanding what has been said.
 Avoid saying “let me know what I can do.” Instead, offer specific things such as bringing a meal, buying groceries, fetching a cup of water or wiping their forehead with a soothing cloth.
 Never judge. There is a strong tendency to criticize an individual or the family for not accepting death, for not being “a good patient or caregiver,” or for not responding “appropriately” to the situation. Each person’s journey through the process should be respected.
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SIGNS AND SYMPTOMS OF DYING
Each person brings to dying his/her own uniqueness. Each death, like each person, is different. However, people who are in the dying process do share some common signs and symptoms.

"I recall when we knew my beloved mother was dying the absolute grief that engulfed me. I had never seen anybody die before, and when we were told that she only had three months to live, I was greatly distressed and fearful. As she each day passed, I became even more afraid, because I had no idea what to expect. Nobody told me what I would see. Nobody told me about the signs and symptoms of dying, and nobody would answer my many questions in the quest to give her the best support and care that she needed. Three months turned into ten. I can honestly say that it was her last days that have shaped my ministry and calling, and her passing that taught me the most about life, death, and the essential gift of hospice. That was twenty years ago. Upon her passing, I made it my goal to help other patients, their caregivers, children and pets in the same situation, as they all face this difficult time in their own way. I have had the profound honor to support hundreds of patients and their families since my mother’s death and I am a huge advocate for some knowledge is better than no useful information. This article will address the final few days."

WITHDRAWAL
Your loved one may seem unresponsive, withdrawn, or in a comatose-like state. This indicates preparation for release, a detaching from surroundings and relationships, and a beginning of “Letting go.” Because hearing may remain all the way to the end, speak to your loved one in your normal tone of voice, hold his/her hand, and say whatever you need to say that will help the person “let go.” Their favorite music can be played quietly, and it is appropriate to read to them gently if it appears to give them a sense of calm.

VISION-LIKE EXPERIENCES
Your loved one may relate perceptions which are not detectable to you. This should not necessarily be thought of as hallucinatory activity. Do not contradict, explain away, belittle or argue about what your loved one claims to have seen or heard; these are real experiences to your loved one. Affirm his or her experiences. They are normal and common. If they frighten your loved one, explain to him/her that they are normal. Many people will say that they can see their loved ones who have already died, and this is very normal. Others claim to see angels, which is also perfectly normal.

RESTLESSNESS
Your loved one may perform repetitive and restless behaviors. While this restlessness may be related to his/her physical condition, it can also indicate that something is still unresolved or unfinished that is disturbing him/her and preventing him/her from letting go. Hospice team members can assist you in identifying what may be happening and help you find ways to help the person release from the tension or fear. Other things which may be helpful in calming the person are to recall a favorite place or experience the person enjoyed.

"I recall one situation where I was sitting vigil with a lady who had no family present. Her son was in another state sitting vigil with his dying wife. My patient opened her eyes, looked at me and gasped, “Help me!” Moments later she gasped the name of a man or boy. I left her momentarily to ask the nursing staff if they knew who this male was. They explained the situation to me. I immediately arranged for a telephone to be placed by her side, and once I had connected her to her son, I left them for a few minutes. I had instructed her son to speak lovingly to her and to have his last conversation of thanks etc. Ten minutes later I reentered her room, to find her calm with a smile upon her face. She died peacefully a few minutes later with me holding her hand. This gesture gave her the closure she needed to pass away and gave her son the same closure and freedom from his guilt of not being able to be in two places at the same time."

FLUID AND FOOD DECREASE
When your loved one wants little or no fluid or food, this may indicate that the person is ready for the final shut down. Do not force food or fluid. You help your loved one by giving him/her permission to let go whenever he/she is ready. If you try to force food or fluid, you take the risk that they will choke. It is important to affirm your loved one’s ongoing value to you and the good you will carry forward into your life that you received from him/her. The nursing staff may instruct you to dab your loved one’s lips with ice cubes. Towards the end, your loved one may have a tremendous amount of saliva which foams from their mouth. Gently wiping away the secretions is a great help.
I am aware that this is a sensitive subject that needs to be discussed. Therefore, we will discuss this and breathing changes in another article.

DECREASED SOCIALIZATION
Your loved one may only want to be with a very few or even just one person. As your loved one’s perceptions are changing, he/she may also indicate a desire for the presence of different support persons. Such a shift in preference does not mean you are any less loved or important. It may mean you have already fulfilled your task with him/her. If you are requested to be of support in the final stages, your loved one needs your affirmation, support, and permission.

"My mother was a well known and loved member of our family and the community. Many people wanted to come to see her before she died, but with each crying person, it was obvious that she could not cope with the emotions of others. It was difficult to tell people this, but her protection and state of mind were more important to me than pacifying others. I felt that it was most important that our children were able to say goodbye, and we will discuss this in another article, which will be dedicated to children’s grief."

UNUSUAL COMMUNICATION
Your loved one may take a seemingly “out of character” statement, gesture, or request. This may result from changes in the brain due to his/her illness. It can also indicate that he/she is ready to say goodbye and is checking to see if you are ready to let him/her go. Accept the moment as a beautiful gift when it is offered. Kiss, hug, hold, cry, and say whatever you most need to say.
I have known many instances when the patient has requested that their family member leave the room to go to do an errand. Within minutes of their family member leaving, they have died. This can cause a sense of deep sadness, regret, and guilt.

"Many say, “Why did he/she die when I left the room?” Others lament, “I should have with him/her, I feel so guilty.” Many people die when alone and one can only guess that they either did not want their loved one to see them die for concern as to how they would deal with it or in some circumstances, their family member is either too loud or disruptive. I liken it to when we are exhausted and want to sleep but the TV or other outside noises are so loud that we cannot succumb to sleep. I have been with patients who had up to twenty people with them, some even arguing and grabbing at the patient. Needless to say, we should honor the process of death and use common sense and love to decide how best to deal with each circumstance."

PROVIDING FOR SPIRITUAL DESIRES
If your loved one has previously discussed a desire for specific spiritual support near the time of physical death, be prepared to honor such wishes in order to provide invaluable comfort. Such practices may include having a spiritual symbol close at hand, reading some significant text or prayer, and/or having a chosen spiritual support person visit.

"I asked one family member if a hymn would be a blessing to his mother as he had indicated that she loved hymns and sacred music. I always carry my phone with me and went to YouTube to search for a beautiful piece of music. In this case, I chose a hymn called:

God be in my head by John Rutter.

www.youtube.com/watch?v=UCik9Us_K2A

God be in my head, and in my understanding;
God be in mine eyes, and in my looking;
God be in my mouth, and in my speaking;
God be in my heart, and in my thinking;
God be at mine end, and at my departing...

The moment the choir sang, “God be at mine end, and at my departing...” we watched as his mother smiled, sighed and peacefully passed away. Needless to say, it was so very beautiful and brought peace and closure to her son and the family."

GIVING PERMISSION AND SAYING GOODBYE
Giving permission to your loved one to “Let go” without making him/her feel guilty for leaving or trying to keep him/her with you to meet your own needs can be difficult. A dying person will normally try to hold on, even though it brings prolonged discomfort, in order to be sure that those who are going to be left behind will be all right. Therefore, your ability to release the dying person from this concern and give him/her assurance that it is all right to let go whenever he/she is ready is one of the greatest gifts you have to give your loved one at this time.

Saying goodbye is your final gift of love to your loved one, for it achieves closure and makes the final release possible. Tears are a normal and natural part of saying goodbye and do not need to be hidden. They express your love and help you to let go. It may be helpful to lie in bed with your loved one and hold him/her or to take his/her hand and say everything you need to say. Your final words may include “I love you,” “Please forgive me,” “I forgive you,” and “Thank you for …...”

If your loved ones have a beloved pet, it is a good idea to let that pet come close to her/him if possible. Oftentimes, pets have an instinct when it comes to times like this, and if allowed to be close, both your loved one and their pet will be connected in a mysterious and mutually comforting way.

"I was a young child when my beloved Grandmother died, and I was not told for six weeks, which was devastating to me. My beloved father was seventeen when he died, and we were not permitted to be at the hospital after visiting hours. This death also impacted me greatly as I was the last person to be in his room the night before and knew in my heart that we were about to lose him. He died at 3:00 AM, alone.

When it came for my mother to die, I was defiant of rules and regulations as I had promised her that I would stay by her side as she requested. I had cared for her at home until a few days before she had to be transferred to a hospice. Mum had been in a deep coma for a day when the signs pointed to her final few breaths. I sat on the bed next to her tenderly holding her hand. She opened her eyes and turned her frail body round to look at me. Her eyes had, “I love you!” shining out to mine. I gently placed my arm around her and said, “Mum, I love you too. We are going to be ok. Thank you for everything you have done for me, now go and be with dad, and go and be with the Lord. Bless you, mum!” She smiled the most beautiful smile I had ever seen, and rolling back to her left side, she closed her eyes, sighed and left us for heaven.

It still gives me tremendous comfort to know that she died in that way. I cannot emphasize enough how important this is and why I am so deeply committed to ensuring that those in my care are not alone at this time and if possible, their loved ones are given the dignity and space to receive closure."

(C) 2019
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COPING WITH GRIEF AND LOSS
Embedded in the promise of life is the certainty that everyone dies. Sooner or later, all of us will grieve the loss of loved ones, whether the agent is a sudden heart attack, stroke, an accident, a larger tragedy such as terrorist attacks, the stress of a disease like cancer, or old age.

Every year, millions of men, women, and children die, leaving behind many others who mourn for them. For decades, popular concepts about grief-focused on severing the relationship with the deceased. Many experts in the field of psychology believed that a bereaved person could move forward in life only after accomplishing this. Newer standards of the way grieving unfold suggest that people must pass through certain phases or accomplish tasks to resolve grief. But do these standards describe universal truths or merely spotlight aspects of a complex process that varies from person to person?

Even a fleeting glance at different cultures shows that people mourn in very different ways. What seems right in one culture – deliberately subdued emotions, perhaps, or restrained wailing from mourners – is jarringly out of place in another. And grief does not vary only from culture to culture; as in other areas of life, differences among individuals are abundant.

If you have experienced the death of someone close to you, you know how painful and prolonged grief can be. But there are ways to channel grief and navigate its desolate waters.
Over the coming months, our intention is to help you do so and to help others in your care. We will be giving you practical ideas for you to try, based on current research, practical experience with an eye to common sense. You will also learn that certain sayings about grief are backed by little or no actual evidence. Contrary to what you may have heard, for example, DENIAL has a useful side. Anger is not always part of grieving. And no single pathway leads out of grief or ensures that you will achieve closure.

No words, written or spoken, are powerful enough to erase grief. But perhaps the advice in these teachings can help ease your sorrow or help you to minister to others in need of support. It may also help to know that most people are able to weather this storm and find that healing occurs in time.
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