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- Drugs May Not Be the Best Choice for Easing the Agitation of Alzheimer’s
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- FOR MORE ARTICLES CLICK HERE
- The Fisher Center for Alzheimer’s Research Foundation Earns Coveted 4-Star Rating from Charity Navigator for the 8th Consecutive Year
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August 26, 2010
People cope with the loss of a loved one in many different ways. For some, the experience may lead to personal growth, even though it is a difficult and trying time. There is no right or wrong way to cope with the passing of a loved one. The way a person grieves depends on the personality of that person and the relationship with the person who has died. How a person copes with grief is affected by many factors: the person’s experience with the illness, the way the disease progressed, the person’s cultural and religious background, his or her coping skills and mental history, existing support systems and the person’s social and financial status.
What is the difference between grief, bereavement and mourning?
The terms grief, bereavement, and mourning are often used in place of each other, but they have different meanings.
Grief is the normal process of reacting to the loss. Grief reactions may be felt in response to physical losses (for example, a death) or in response to symbolic or social losses (for example, divorce or loss of a job). Each type of loss means the person has had something taken away. As a family goes through a life-threatening or chronic illness, many losses are experienced, and each triggers its own grief reaction. Grief may be experienced as a mental, physical, social or emotional reaction. Mental reactions can include anger, guilt, anxiety, sadness, and despair. Physical reactions can include sleeping problems, changes in appetite, physical problems or illness. Social reactions can include feelings about taking care of others in the family, seeing family or friends or returning to work. As with bereavement, grief processes depend on the relationship with the person who died, the situation surrounding the death, and the person’s attachment to the person who died. Grief may be described as the presence of physical problems, constant thoughts of the person who died, guilt, hostility and a change in the way one normally acts.
Bereavement is the period after a loss during which grief is experienced and mourning occurs. The time spent in a period of bereavement depends on how attached the person was to the person who died, and how much time was spent anticipating the loss.
Mourning is the process by which people adapt to a loss. Mourning is also influenced by cultural customs, rituals and society’s rules for coping with loss.
What is “grief work” and how does it relate to mourning?
“Grief work” includes the processes that a mourner needs to complete before resuming daily life. These processes include separating from the person who died, readjusting to a world without him or her, and forming new relationships. To separate from the person who died, a person must find another way to redirect the emotional energy that was given to the loved one. This does not mean the person was not loved or should be forgotten, but that the mourner needs to turn to others for emotional satisfaction. The mourner’s roles, identity and skills may need to change to readjust to living in a world without the person who died. The mourner must give other people or activities the emotional energy that was once given to the person who died in order to redirect emotional energy.
People who are grieving often feel extremely tired because the process of grieving usually requires physical and emotional energy. The grief they are feeling is not just for the person who died, but also for the unfulfilled wishes and plans for the relationship with the person. Death often reminds people of past losses or separations. Mourning may be described as having three phases, including the urge to bring back the person who died, disorganization and sadness, and reorganization.
What are the phases of coping with a life-threatening illness, like Alzheimer’s?
Understanding how other people cope with a life-threatening illness may help the patient and his or her family prepare to cope with their own illness. A life-threatening illness may be described as having four phases, including the phase before the diagnosis, the acute phase, the chronic phase, and recovery or death.
The phase before the diagnosis of a life-threatening illness is the period of time just before the diagnosis when a person realizes that he or she may develop an illness. This phase is not usually a single moment but extends throughout the period when the person has a physical examination, including various tests, and ends when the person is told of the diagnosis.
The acute phase occurs at the time of the diagnosis when a person is forced to understand the diagnosis and make decisions about his or her medical care.
The chronic phase is the period of time between the diagnosis and the result of treatment. It is the period of time when a patient tries to cope with the demands of life while also undergoing treatment and coping with the side effects of treatment. In Alzheimer’s, the period between a diagnosis and death may last many years.
In the recovery phase, people cope with the mental, social, physical, religious and financial effects of the disease.
The final (terminal) phase of a life-threatening illness, like Alzheimer’s, occurs when death is likely. The focus then changes from curing the illness or prolonging life to providing comfort and relief from pain. Religious concerns are often the focus during this time.
How might the terminal phase of a fatal illness affect families?
People who are dying may move toward death over longer or shorter periods and in different ways. Different causes of death result in different paths toward death.
The pathway to death may be long and slow, sometimes lasting years, or it may be a rapid fall toward death (for example, after a car accident) when the chronic phase of the illness if it exists at all, is short. The “peaks and valleys” pathway describes the patient who seems to get better repeatedly and then worse again (for example, a patient with AIDS, leukemia, or Alzheimer’s in some cases). Another pathway to death may be described as a long, slow period of failing health and then a period of stable health (for example, patients whose health gets worse and then stabilizes at a new, more limiting level).
Patients on this pathway must readjust to losses in functioning ability. Deaths from Alzheimer’s disease often occur over a long period of time and involve long-term pain and suffering and/or loss of control over one’s body or mind. Deaths caused by Alzheimer’s are likely to drain patients and families physically and emotionally because they occur over a long period of time, often many years.
What is anticipatory grief?
Anticipatory grief is the normal mourning that occurs when a patient or family is expecting a death. Anticipatory grief has many of the same symptoms as those experienced after death has happened. It includes all of the thinking, feeling, cultural and social reactions to an expected death that are felt by the patient and family.
Anticipatory grief includes depression, extreme concern for the dying person, preparing for the death and adjusting to changes caused by death. Anticipatory grief gives the family more time to get used to the reality of the loss slowly. People can complete “unfinished business” with the dying person (for example, saying “Good-bye,” “I love you” or “I forgive you”).
Anticipatory grief may not always occur. Anticipatory grief does not mean that before the death, a person feels the same kind of pain as the grief felt after a death. There is not a set amount of grief that a person will feel. The grief experienced before death does not make the grief after death last a shorter amount of time.
The grief that follows an unplanned death is different from anticipatory grief. The sudden loss may overwhelm the coping abilities of a person, making normal functioning impossible. Mourners may not be able to realize the total impact of their loss. Even though the person recognizes that the loss occurred, he or she may not be able to accept the loss mentally and emotionally. Following an unexpected death, the mourner may feel that the world no longer has order and does not make sense.
Some people believe that anticipatory grief is rare. To accept a loved one’s death while he or she is still alive may leave the mourner feeling that the dying patient has been abandoned. Expecting the loss often makes the attachment to the dying person stronger. Although anticipatory grief may help the family, the dying person may experience too much grief, causing the patient to become withdrawn.
What are the phases of grief?
The process of bereavement may be described as having four phases:
- Shock and numbness: Family members find it difficult to believe the death; they feel stunned and numb.
- Yearning and searching: Survivors experience separation anxiety and cannot accept the reality of the loss. They try to find and bring back the lost person and feel ongoing frustration and disappointment when this is not possible.
- Disorganization and despair: Family members feel depressed and find it difficult to plan for the future. They are easily distracted and have difficulty concentrating and focusing.
- Reorganization: Survivors begin to accept their loss and to establish new ties to others, with a gradual return of interests and activities.
What kind of help is available for people who have difficulty coping with grief?
Most of the support that people receive after a loss comes from friends and family. Doctors and nurses may also be a source of comfort. For people who experience difficulty in coping with their loss, grief counseling or grief therapy may be necessary and helpful.
Grief counseling helps mourners with normal grief reactions work through the tasks of grieving. Grief counseling can be provided by professionally trained people, or in self-help groups where bereaved people help other bereaved people. All of these services may be available in an individual or group setting. It is important to remember that everyone deals with grief differently and seeking help from a grief counselor is in no way a sign of weakness.
The goals of grief counseling include:
- Helping the bereaved to accept the loss by helping him or her to talk about the loss
- Helping the bereaved to identify and express feelings related to the loss (for example, anger, guilt, anxiety, helplessness, and sadness)
- Helping the bereaved to live without the person who died and to make decisions alone
- Helping the bereaved to separate emotionally from the person who died and to begin new relationships
- Providing support and time to focus on grieving at crucial times such as birthdays and anniversaries
- Describing normal grieving and the differences in mourning among individuals
- Providing continuous support
- Helping the bereaved to understand his or her methods of coping
- Identifying coping problems the bereaved may have and making recommendations for professional grief therapy
What is grief therapy and how might it help?
Grief therapy is used with people who have more serious grief reactions. The goal of grief therapy is to identify and solve problems the mourner may have in separating from the person who died.
When separation difficulties occur, they may appear as physical or behavior problems, delayed or extreme mourning, conflicted or extended grief, or unexpected mourning.
Grief therapy may be available as individual or group therapy. A contract is set up with the individual that establishes the time limit of the therapy, the fees, the goals, and the focus of the therapy.
In grief therapy, the mourner talks about the deceased and tries to recognize whether he or she is experiencing an expected amount of emotion about the death. Grief therapy may allow the mourner to see that anger, guilt or other adverse or uncomfortable feelings can exist at the same time as more positive feelings about the person who died.
Human beings tend to make strong bonds of affection or attachment to others. When these bonds are broken, as in death, a strong emotional reaction occurs. After a loss occurs, a person must accomplish certain tasks to complete the process of grief. These basic tasks of mourning include accepting that the loss happened, living with and feeling the physical and emotional pain of grief, adjusting to life without the loved one, and emotionally separating from the loved one and going on with life without him or her. It is important that these tasks are completed before mourning can end.
In grief therapy, six tasks may be used to help a mourner work through grief:
- Develop the ability to experience, express and adjust to painful grief-related changes
- Find effective ways to cope with painful changes
- Establish a continuing relationship with the person who died
- Stay healthy and keep functioning
- Re-establish relationships and understand that others may have difficulty empathizing with the grief they experience
- Develop a healthy image of oneself and the world
Complications in grief may come about due to uncompleted grief from earlier losses. The grief for these earlier losses must be managed in order to handle the current grief. Grief therapy includes dealing with the blockages to the mourning process, identifying unfinished business with the deceased, and identifying other losses that result from the death. The bereaved is helped to see that the loss is final and to picture life after the grief period.
What is complicated grief?
Complicated grief reactions require more complex therapies than uncomplicated grief reactions.
Adjustment disorders (especially depressed and anxious mood or disturbed emotions and behavior), major depression, substance abuse, and even post-traumatic stress disorder are some of the common problems of complicated bereavement. Complicated grief is identified by the extended length of time of the symptoms, the interference caused by the symptoms, or the intensity of the symptoms (for example, intense suicidal thoughts or acts).
Complicated or unresolved grief may appear as a complete absence of grief and mourning, an ongoing inability to experience normal grief reactions, delayed grief, conflicted grief or chronic grief. Factors that contribute to the chance that one may experience complicated grief include the suddenness of the death, the gender of the person in mourning, and the relationship to the deceased (for example, an intense, extremely close, or very contradictory relationship). Grief reactions that turn into major depression should be treated with both drug and psychological therapy. One who avoids any reminders of the person who died, who continually thinks or dreams about the person who died, and who gets scared and panics easily at any reminders of the person who died may be suffering from a post-traumatic stress disorder. Substance abuse may occur, frequently in an attempt to avoid painful feelings about the loss, as may symptoms (such as sleeplessness). Post-traumatic stress can also be treated with drugs and psychological therapy.
Source: Adapted from “Bereavement, Mourning, and Grief (PDQ®)”, National Cancer Institute, US National Institutes of Health.
More information on Bereavement and Grief is available from the National Institutes of Health.