from
Only God Knows When
by Carolyn Jaffe and Carol H. Ehrlich
in
All Kinds of Love:
Experiencing Hospice
Baywood
We have found our patients' and families' adaptation to dying tends to
move erratically through a number of stages, conceived differently by
various people but, like the blind man and elephant, all touching on the
truth.
If the period of dying is long enough to permit it, families typically
experience anticipatory grieving which may allow some adjustments ahead of
time. Beginning when they learn of the diagnosis and prognosis, family
members are struck with shock and pain. The characteristics of what they
feel are the same for many (and may be familiar to our readers). Their
physical reactions may include shortness of breath, fatigue, tightness in
the chest and throat, difficulty sleeping, crying, dry mouth, empty
feeling in the stomach, dizziness, nervousness, irritability, and
oversensitivity to noise. Their psychological reactions can include
numbness, guilt, longing, anger, sadness, despair, fear of going crazy,
apathy or overactivity, depression, or ambivalence. Reactions of
disbelief, disorganization, and confusion are common. Close survivors
often also feel aimless, with a lack of interest and motivation, and be
unable to concentrate.
Some short time after this period of initial acute grief, rationality
usually reappears. The family members realize that life is continuing for
the present and there are things to be done. Grieving begins to change
character.
The thinking about grief has evolved over time, beginning with Freud's
belief in 1917 that its essence was a withdrawal of emotional ties to the
deceased, which he called decathexis. Psychiatrist Eric Lindemann accepted
Freud's definition, and in 1944 added as another stage the forming of new
relationships. They and others felt the grieving should be limited in
time-- four to six weeks in Lindemann's mind (which must come as a big
shock to grieving loved ones struggling after months or even years), and
up to three years in others'. Freud seemed to modify his position later,
indicating that grief over loss of a very close person could go on
indefinitely. The Committee for the Study of Heath Consequences of the
Stress of Bereavement of the Institute of Medicine concluded in 1984 that
an end point of grieving cannot be identified, and for many people it can
last a lifetime as a low-grade "shadow grief"-- grieving which doesn't
significantly inhibit daily functioning but persists to sadden them.
Grieving survivors can at least now be relieved of the burden of
considering themselves abnormal.
Kübler-Ross considered denial, anger, bargaining, depression, and
finally acceptance to be the stages a dying person experienced, perhaps in
erratic order before death, a list considered by Corr to be incomplete.
Similarly, the process of grieving is thought to have discernible steps
that follow the initial shock: avoidance, confrontation, and
accommodation, or in another array, acceptance of the reality of loss,
working through to the pain of grief, adjustment to the environment in
which the deceased is missing, emotionally relocating the deceased and
moving on with life, and rebuilding faith and a philosophical system that
had been challenged by the loss. These steps are not necessarily-- not
often, would be more accurate-- linear. As Rabbi Earl Grollman has said,
no one follows a cookbook. We see our families moving back and forth,
avoiding, then achieving some confrontation or acceptance, then avoiding
the reality once more; they may reach some level of accommodation, then
find it too hurtful and drop back for a time. These emotions often
overlap; two or more can be present at the same time. The response we see
to death is always more complicated than these descriptions imply, but for
persons who suffer real loss, all stages must eventually be visited in
some form and plumbed before health and a desire to live once again
returns.
Following Sigmund Freud's earlier discussion of the work of grief, in
1944 Eric Lindemann coined the phrase "grief work" to describe what
survivors do as they attempt to cope with the loss of a loved one. They
must think through and face the reality of the loss, express their
feelings and emotions and become reinvested in life, and that takes work.
The term could not be more appropriate. It was adopted by professionals in
the mental health field, and has been in use ever since.
The work, or tasks, we see our successful families assume include
working through the anger or guilt some of them feel, and reviewing the
relationship they had with the deceased in enough detail to result in a
realistic view of the person-- one which is neither idealized nor unfairly
negative. Either or both tasks may require the assistance of a therapist.
Keeping a journal has been suggested as a help to the survivor....
We should note that survivors are not isolated in doing their grief
work. We have seen the family influence each member's grieving. Each one
has an effect on the others; the family unit, itself, also suffers grief
which affects the individuals. Their grief can be seen in one or more
changes: alteration of the amount and pattern of communication among them
(a normally placid child may pound everyone's ears with anger, a husband
may withdraw from all conversation); the reconnecting or cutting off of
certain family members (one of the offspring may not have fulfilled her
expected role in helping to care for the dying father, with resulting
resentment from the others); confusion in the family hierarchy (none of
the siblings steps into the now vacant head-of-the-family position); role
confusion (who is going to be the family peacemaker and organizer);
isolation of the family from outsiders and overprotection of family
members (acquaintances don't know what to say to grief so they stay away
or remain silent, and the family members circle their wagons as a
protective act). Changes in family dynamics will either stymie or
reinforce the grief work of the individuals in the family.
Families who had communication problems before the death and families
who adhere to rigid roles for each member are apt to create or exacerbate
problems in grieving. Their patterns do not help the individual members,
who need particularly to be able to communicate openly, and who must
function despite the death-created loss of family role-structure.
Flexibilty of roles-- reorganizing so all of the roles are once more
filled-- would enhance everyone's adaptation.
Just as individuals must do their grief work, families have tasks
ahead of them. They must share an acknowledgement of the death and loss
(which can perhaps occur when the group takes time to look through old
photos and records), reorganize the family system, and reinvest in new
relationships and life pursuits. These are processes we take for granted,
not recognizing their discrete elements until one of them breaks down or
fails to happen.
[R]ituals often help families and their members. Rituals mark the
loss, affirm the life now gone and help family members express their
grief. Rituals can illuminate the meaning of death and ongoing life, make
sense of the loss and give the family a sense of continuity, all of which
helps its individual members.
Rituals can be as simple as planting roses or contributing something to
the deceased person's synagogue or church or other organization, and many
ideas in between.
Almost a truism, there is no shortcut for this process. The services and
formal mourning period are over quickly; the time required to accept the
absence of the loved one-- to give him up-- takes time, and is painful.
There can be no greater understatement.
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