Each new day begins with a sunrise. It brings to earth a new light that has never been seen before. The new light starts small and gradually reaches its peak in the vast sky. It nourishes the land, provides warmth and comfort, and inspires epic tales. As the day ages the light slowly sinks behind the horizon leaving behind brilliant splashes of color as if to reflect upon its accomplishment, but the pallet of colors will quickly fade to black as the light leaves the sky to go to places unknown. Even though the day was bright and created wonder it must give way to the tranquil, mysterious, and cool night.
Just as the dawn must give to the night each birth must yield to an eventual death. The night, like death, holds a sense mystery and tranquility for some. To others it invokes all the horrors found in the scariest nightmares. While man may find ways to prolong the inevitable, each must yield to the waning light and go into that which he may have no knowledge of prior to the journey. It is a journey he will make alone. He will be stripped of all his earthly possession including his body. Only his soul will be allowed to pass into the dusk; the time of night. My friends, he must die and yet you must live on. As with every story, death too, has more than one perspective. The lone warrior who must take the solitary journey and the spectators watching the eternal sunset both have their story about the same event, but each story is unique.
The dying and their family do not have to face the uncertainty and often fearful process alone however. Organizations such as RMH Hospice Care can help both the dying and their loved ones. Any person that has a terminal diagnosis, and is not expected to live for more than six months is eligible for Hospice assistance. Hospice Care helps to alleviate the stress that is encountered during the dying process by taking a holistic approach to treatment. It often severs as an educational tool to the person and their family. Hospice also provides awareness of the options that are available to the dying person. They also seek to educate the community and health care workers.
The word hospice comes from the root word for hospitality in Latin. In basic terms Hospice means to provide hospitality to the dying person and their family. This means giving palliative or comfort care to the dying and helping their loved ones in many ways. Hospice nurses provide medications to the clients that help to alleviate pain, ease breathing and treat depression that accompanies the process of dying. The nurses also educated the family so that they can understand better what is happening with their loved ones. Hospice workers also provide some counseling to the family and patient. After the death they continue to keep in touch with the family.
Historically nuns were caring for the dying persons in monasteries prior to the construction of hospitals. The word hospital also comes for the Latin word for hospitality. In the late sixties a doctor named Dame Saunders applied the term Hospice to the care of the dying (History of Hospice Care – The National Hospice and Palliative Care Organization). She would also introduce the practice of caring for the dying to the United States. One of the purposes hospice serves is to help the dying person and their family to work through the stages and processes of accepting the fact death will occur and to provide help for the family after the death of their loved one. Hospice workers are aware of and educate about the stages that Elisabeth Kubler-Ross introduced to the realm of death and dying.
The dying person experiences intimately the process of dying that Elisabeth Kubler-Ross identified, but their loved ones who are left behind after the death experience the grief associated with the loss of a loved one must complete the tasks of mourning identified by William Worden in order to achieve an acceptable quality of life without their loved one.
Everyone reaches a point in their life when they understand that they will die. Sometimes this revelation comes as a part of a terminal disease diagnosis. Other times it is simply the realization that their age is greater than the time they have left. When the time of death is near those who are dying often begin working though a process that Elisabeth Kubler-Ross presented in the late sixties. She identified five steps that the dying person works through. These steps are now looked at as process because a person may go between the steps and in various orders (L.Bee & Bjorklund, 2005). Kubler-Ross identified denial, anger, barraging, depression, and acceptance as the processes that dying person experience.
Denial is simply denying that one is close to death. The person may continue to present the illusion that there is nothing wrong with them. A woman with breast cancer was observed by her friends as refusing to have surgery, and sought out several “second” opinions. A man in hospice care because of prostate cancer may tell the nurse who is making a home visit, “I don’t know why you are here I am fine.” One particular client who lives in a nursing facility with several levels of care has recently been moved to the special care unit because of his terminal condition and the new requirements of care. He is in deep denial despite his diagnose of terminal lung cancer. He has made no effort to commission a will. He has established no living will or a person to act as his power of attorney should he be unable to make decisions concerning his medical needs or finances. He has even refused to meet with the social worker. His daughter is currently going through legal process to obtain power of attorney.
She requested Hospice care for him. A hospice nurse met with him, and he agreed to sign consent and keep his current DNR status active, but he stated, “I am only doing this so Sally will leave me alone.” He still refuses to fill out the wish book given to him by hospice. The wish book allows for the dying persons to write down wishes they would liked honored as they are dying and after they are dead. It is assumable that he feels there is no need to express this information because he is “fine.”Denial from family members can also be seen. Aides and nurses who go to the homes of the hospice clients report denial from family members as a part of their observations.
At a home visit one hospice nurse has met opposition from the daughters of a 59 year old man in the Hospice program. She is reluctant to sign important papers because “daddy is gonna live a long time still,” despite his need for high amounts of oxygen and advancing congestive heart failure. Another man, observed at an assistant living facility in Harrisonburg by a nurses aid working on the special care unit, response to his 69 wife’s terminal cancer diagnosis and recent move to the new unit by saying “those d@#n doctors they don’t know anything anyway. She’ll pull through this. She’s been through worse.” He is reflecting upon the first time she was diagnosed with cancer 6 years ago. This time however she has chosen to not go through the aggressive treatments for her cancer.
Anger is another process identified by Kubler-Ross. Anger refers to the feelings felt once the person realizes they are dying. It is only natural for a person feel angry at the loss of their most precious asset. Anger is sometimes seen in sudden outburst. An elderly woman at an assistant living facility who is normally peaceful and quite was observed by a student throwing her little glass birds in her room and cursing God a few days after receiving bad news from her doctor. In the same facility the student was confronted with a young man who has AIDS. He was almost unapproachable because of his hatred of persons with much life ahead of them.
Anger is not restricted to the dying person only. Family members experience this emotion as well. A middle age man whose wife is visit frequently by a hospice nurse due to the effects of the end stages of terminal cancer curses God for taking his wife instead of someone who had done terrible deeds. He clenches his fist and looks to the sky as if to challenge God himself. Anger is reflected in family members of an elderly woman who has suffered a fall as the result of neglect. The fall caused much trauma for the woman, and it became evident she would not recover from the damage. Her family vocalizes their anger and feelings of unfairness to the aides who care for their mother in the special care unit.
Bargaining is the offer of a sacrifice in return for more life. The dying cancer patient may ask God to grant him life until the end of the holiday season, and he will ask for nothing else. A little woman in a hospice care program asked God to grant her enough time to see her gardens bloom one last time. This too was a last request. Another gentleman promised good behavior and greater religious commitment in return for a longer life.
Bargaining is also seen among family members. They are willing to give up a lot in order to preserve a loved one’s life. For example the middle age man losing his wife to terminal cancer reported asking God to save his wife, and take his instead. He also promised to be a better person and give more money to the church. To show that he was serious he donated several thousand from the sale of property to the church. His sincerity and hurt made the observer want to cry. He was clearly trying to save his wife’s life.
Depression affects the mental health of the dying. Depression in the dying is a reaction to the disorder of their life created by the disease and because of the realization that they must prepare to meet death (Strickland, 2005). Depression in the dying person is often observed by caregivers in the form of the refusal to eat, not going out, refusing to see other people, and showing no interests in hobbies they one enjoyed. The man with congestive heart failure often enjoyed building small wooden toys. When asked if he had been in his workshop lately he said, “No, just have not felt like it. Not really much point.” The young man suffering from AIDS has not turned on his playstation in a month. He used to play several hours a day. His mother has offered him several new games.
Acceptance of one’s death is not the same as giving up. It is actually the act of accepting death in a manner that allows for the need reflection of the life lived. The middle aged woman with terminal cancer put her “affairs in order,” made all her own funeral arrangements so her family would not have to, and dictated her living will and estate will to her attorney. She has accepted her own mortality. An elderly woman has sold property she does not use, started giving away her possessions to family members, and is writing her memories in a journal.
She also decided to empty her bank account and split the money between her five grandchildren. With a evil little smiled she said, “Now the greedy lawyers won’t get a dime of it.”During the last week of his wife’s life the middle aged man came to accept his wife’s very near death. He quit asking for her life to be extended. When he asked for the nurse and aide to join him in prayer he now prayed for comfort and a peaceful passing for his wife. He asked for guidance in the days after her death. He also asked her what she wanted to be buried in. He knew she was a particular woman when it came to dressing.
A person or family member can experience these stages in any order. They may also experience more than one stage at once. For example the man with congestive heart failure had accepted the fact that he would soon be dying, but he still bargained for more time. He wanted to live though his daughter’s wedding. He felt he could die in peace if he could attend his youngest daughter’s wedding. Anger was the first reaction to one woman’s terminal diagnosis, but instead of bargaining she went into depression. Her depression was often mixed with angry actions. If she bargained it was in her personal space and time. On the eve of her death she became afraid to be alone, and she verbalized for the first time her acceptance of death. “I do not want to die alone. Please stay with me,” she asked several aids in the nursing home she lived in. The young man with AIDS knows he is dying and he is quick to state “I am going to die soon,” and he has signed a DNR form, made request for his funeral, and signed his property over to his mother.
He show acceptance by the above mentioned acts, he is still very angry and considers himself unjustly persecuted by the Gods, he can be heard often barraging for more time, and is severely depressed. The only stage he seems not to be in is denial. It is possible in the depths of his mind he may still try to convince himself that he normal, well, and has many years to live. Denial was once an issue for him however, for nearly six years he refused treatment for HIV because he did not want to admit he was carrying the virus in his blood. He pursued numerous “second opinions.”Family members display the same fluidity in the stages indentified by Kubler-Ross.
The daughter who refused to sign important papers for her father because she felt he was not in the dying process eventually agreed to sign them. However she stated, “I do not think he is dying, but I need the help so I will sign them.” The family angry because of the neglect that lead to the terminal condition of their mother never let go of the angry feelings even though they moved through the four other processes. The middle aged man was depressed during the time his wife was dying. He also bargained with God despite being angry with him. In a few cases the family members simply accepted the fact their loved one was dying. If there were any of the other stages present they hid their feelings very well. In these cases the dying person was very old, had lived a full life, and there was not the presence of terminal illness.
Once the loved one has passed away the tasks of mourning and recuperating from the loss is placed on the survivors. William Worden has established
four tasks of mourning. These tasks must be met in order for the survivors to return to the quality of life that they experienced before the death of their loved one (Worden, 2001). These tasks, unlike Kubler-Ross’s stages, are worked through in order.
Worden’s first task requires that the mourners “accept the reality of the loss,” (Worden, 2001). Worden acknowledges the reality of death is tough to accept even if the death was anticipated. In post-death visits done by Hospice this is most common seen in a verbal form. The daughter of the man who died from congestive heart failure remarked upon a comment made by an observer about the toy train her father had made, Daddy is- I mean was always good with his hands.”
She had a hard time accepting the fact her father was dying, but is working into accepting his death. The middle aged husband who lost his wife to terminal cancer also showed signs of making the adjustment to accepting his loss. He would often say “it’s what she would’ve wanted me to do,” or she was this and she use to do that. A woman whose husband recently passed made the comment “that was my husband’s favorite ice cream,” at an ice cream social event at her assistant living facility.
Sometimes this type of speech is noted before the person has passed away. Visitors of an elderly man who was in his last few hours of life were overheard saying, “He was a good man.” Nurses in nursing homes also do the same type of behavior. “She was sick, even though she is still sick, and “he wanted to die peacefully,” despite the fact he has not yet passed away.
Funeral homes often help with the acceptance as well. The remembrance cards are written in past tense. Funeral directors give the option for an open casket funeral or viewing. The practice of being able to view the body of their loved one often helps people to accept their loss as reality. The ideas that are associated with a funeral and funeral parlors also help the surviving members to come to terms with the fact a loved one has died.
Worden’s second task involves the chore of “working through the grief,” (Worden, 2001). Grief can include both physical, emotional and behavior aspects. It is often referred to as the “pain of loss, the empty space in my heart, and nothingness.” Family members can become depressed after the loss. A newly widowed woman refuses to eat, and stays in her room. Prior to her husband’s death she was active within the assist living facility’s community As the weeks turned to months she began eating at every meal, and once again participating in the activities. Occasionally she will even make small humorous remarks about all the time she has now that she does not have to worry about her husband.
Adjusting to the changed environment is the third tasks in Worden’s four tasks to mourning the loss of a loved one. The changed environment is the places where the loved one is missing from. The home, or apartment, and place of work are examples of the environments that experience a change when a person dies. When a widow allows for the removal of her husband’s clothes from her closet she is making a small change in the environment to reflect its change. In the case of the man who passed from the effect of chronic heart failure, his daughters removed the hospital bed from the living room, and returned the sofa and book cases.
The same occurred in the house of the middle aged man whose wife died from terminal cancer. Part of this change was prompted by the fact that the hospital beds were rentals from medical supply companies. The nurse who did the follow-up visit to his home noted that the man had chosen to completely rearrange his living room after the hospital bed was moved. He also purchased some new furniture for the room. His daughter took to only setting the formal dining room with three table setting instead of the four place settings. The imbalanced of the table settings contrasted greatly with the theme of symmetry in the room. All the decorations and furniture in that room was bought in pairs and arranged evenly. The table looked odd with its uneven number of place settings. The granddaughter has removed all the blankets from the “sick room” (her reference to the living room) because they were only for sick people.
Adjustment to the changed environment can sometimes be problematic when the environment the person occupied most during their last days were in a nursing home. Because rooms in a nursing facility are often in high demand the rooms have to cleared and cleaned quickly. In some cases this change occurs with hours after the person death. This can be upsetting to family members who may have wanted to spend some quite time among their loved one things. Nurse aids often report that it makes them feel like the person meant nothing to anyone when the rooms are cleared and cleaned quickly. Even though the nurses only spend a short amount of time with the person their personalities often lend to quick attachments. Sometimes nurse aids will take keepsakes from the person room, with family permission of course. One nurse aid was given a house plant by the family of a resident she grew very close to. She still talks about the plant and the person frequently despite the passing of two years.
The fourth task is to “emotionally relocate the deceased and moving on with life,” (Worden, 2001). To accomplish this task the mourner must acknowledge that while they will never forget or renounce their love for that person, there are other they can love (Worden, 2001). An example of this can be seen when a widowed person after sometime meets, falls in love with, and marries someone else. They understand that they will always love their first spouse, but they have accepted and properly mourned their loss.
That being done they are able accept and give love to another person. Parents who have experienced the loss of a child may choose to become pregnant and have another child. They have not forgotten the child they once had and loved. They simply now realize that they can still have the love for the child that has died and for a new baby. A widow who goes out and seeks meaningful relationships among her peers so as not to be socially isolated is allowing for some of the “empty space in her heart” to be filled with the love and understanding found in the new friendships.
When a person is in the twilight of their live they must work through stages like those attributed to Elisabeth Kubler-Ross. Along with the dying person the family also experiences the emotions linked with these stages. The dying person and their family may not experience the stages of denial, anger, bargaining, depression, and acceptance in order or at the same time. The person may experience more than one stage at a time.
Once the sunset has set on a person’s live their family members are left with the chore of accepting the loss and mourning the dead. William Worden set forth four tasks of mourning that if completed successfully the mourner will be able to return to the quality of life they experienced before their loss. The mourner must accept the loss, master their grief, acknowledge changed environments, and “relocate the deceased. (Worden, 2001)”While part of the grieving process starts before the death, and can be experienced with the dying person, the tasks of mourning are solely up to the survivors to complete. It is unknown what stage if any the deceased experience after their death. This is a heavily guarded secret only imparted to those who make the journey into the great unknown.
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