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Grief
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"Pop is still with us, but in some ways I find myself
grieving as though he’s already died. I feel guilty
and sometimes tremendously sad. It seems weird to be mourning
his loss when he’s still alive."
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Anticipatory Grief
When a person receives a serious
diagnosis, his or her life is irrevocably changed. It is very
common for both the patient and family to begin a grieving process.
It may be that the patient is grieving the loss of his or her
self-image as a healthy person. The grief can be over the loss
of roles the patient is no longer able to fulfill. Both the
patient and caregivers may grieve the loss of hopes and dreams
and a future that is no longer possible.
Sadness, fear, and anxiety are
natural responses. Life is precious, after all. The thought
of losing it, of losing our loved ones and the pleasures and
joys we hold dear, can be very frightening. This "anticipatory
grief"—the patient’s and caregivers’ mourning
of losses present and yet to come—is a perfectly normal
reaction to the reality of death. It is a part of the process
of coming to terms with the unthinkable. (For information about
grief following the death of a loved one, see our article about
mourning.)
Living fully in the present while
preparing for the possibility of death in the future can be
challenging for patient and caregiver awlike. For the patient,
it is a time of facing fears, evaluating one’s life,
and saying good-bye. Once physical problems such as pain
or nausea
are controlled, emotional and spiritual losses come to the
fore.
Resolving family relationships
and defining a sense of purpose or meaning
to life will help the patient cope with these natural
feelings of grief and fear.
For family caregivers, anticipatory
grief involves a delicate balance of staying close to the patient
and enjoying what days or weeks remain while investing in life
and preparing for a possible future without your loved one.
It is important that the patient feel your love and willingness
to be present. People who are seriously ill are very sensitive
to being a burden or being abandoned. Focus on enhancing the
quality of your time together. Often what the patient needs
most is a good listener, someone who will acknowledge concerns
without straining to fix things or make things better. Bringing
your calm and loving presence to the time you spend together
will be healing indeed.
Don’t feel you must spend
every moment together, however. You cannot fill your days with
caregiving and do nothing else. It's not healthy. Give yourself
breaks, even if it’s just 20 minutes on the porch enjoying
the garden or reading a book. Arrange for help so you can get
away from the house and all your responsibilities from time
to time and focus on your own well being. Stay involved with
friends, if only by phone or e-mail, and find a way to spend
some of your time talking about subjects other than caregiving.
Spend time with children in your life and engage in activities
that are pleasurable in and of themselves. You will be a better
caregiver for taking good care of yourself. Not only will you
come back refreshed, but you will be better able to process
your grief if you give yourself opportunities to be relieved
of it from time to time. (Return
to list)
Strategies for grief
Patients and caregivers can ease
their grief by |
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- getting exercise to the level appropriate to their condition
- limiting or avoiding sugars and caffeine. (The ups and
downs they may cause make it difficult to find emotional
balance.)
- getting enough rest (especially for those who are having
trouble sleeping)
- doing at least one thing a day that genuinely gives pleasure
- talking to a close friend or family member who is a good
listener
- writing in a journal or using other means of expression
(painting, playing music, etc.)
- at the end of each day, reflecting in a positive way
on activities or events that were meaningful ("seeing
the glass as half full")
- praying, meditating, or talking to a member of the clergy
(for those who are spiritually inclined).(Return
to list)
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Depression
Sometimes anticipatory grief becomes
depression. An estimated 77 percent of patients in the advanced
stages of cancer, for example, are clinically depressed. Family
members are also affected. Research shows that caregivers are
far more likely to be depressed than are people who are not
caregiving. Depression is considered a common side effect of
serious illness.
Although depression that stems
from grief and impending loss is certainly understandable, it
can make the daily process of living quite difficult for patient
and caregivers alike. For those who are depressed, even getting
up in the morning is a struggle. Fortunately, depression is
a very treatable condition. You have enough to do to cope with
the physical, spiritual, social, and financial challenges of
a life-limiting illness; you don’t need to grapple with
the downward emotional spiral of depression on top of it.
Doctors diagnose depression if
a person has experienced four or more of the following symptoms
nearly every day for two weeks or more: |
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- fatigue, listlessness, lack of energy
- inability to remember, concentrate, or think clearly
- lack of motivation
- no joy in activities one used to find pleasurable
- withdrawal from others
- changes in eating patterns (eating more or less than
usual)
- changes in sleeping patterns (sleeping more or less than
usual)
- an increase in the use of cigarettes, alcohol, or other
mood-altering substances
- feelings of sadness and bouts of crying
- feelings of hopelessness or despair
- feelings of worthlessness
- feelings of guilt
- thoughts of suicide.
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It
is not difficult to see how serious illness might bring about
these symptoms and feelings. Many of the physical symptoms
are things the patient might experience from his or her disease.
If the person who is ill is expressing feelings of hopelessness,
worthlessness, guilt, or thoughts of suicide, it is important
to alert the doctor. Emotional suffering is every bit as painful
as physical suffering, and your doctor will want to help you
find ways to alleviate it.
If you as the caregiver are
experiencing four or more of the previously described symptoms,
you should also let your doctor know. Depression is not inevitable.
It is a condition that can and should be treated so that your
energy is freed to focus on the other tasks before you. (Return
to list)
Treatments for depression
Antidepressant medications have
been shown to be a very effective, nonaddicting method of
treatment. They do not work right away, however. It takes
several weeks before you start to feel the benefits, and they
often cause side effects. You may need to go through a trial
and error process to find the best medication for your body.
For a person with a terminal diagnosis, time is of the essence,
so you might want to ask your doctor about quicker-acting
psychostimulants.* They are generally well tolerated and not
only enhance the patient’s mood, but also appear to increase
appetite, improve energy, and amplify the effectiveness of
pain medication.
Antidepressant medications also
seem to work best in combination with "talk therapies."
Expressing our feelings is an important part of breaking the
negative momentum of depression. Counselors are trained to
help clients get to the heart of a problem very quickly and
effectively. Talking with nonprofessionals can also be beneficial.
Support groups are a powerful way to work through your feelings
and gain useful tips from others who are in situations similar
to your own. Those who are housebound could seek out the many
online support
groups designed for patients as well as caregivers.
Even talking with a good friend or family member can be helpful.
In addition to using medications
and talk therapy, some people cope with depression by focusing
on a project or hobby. Doing something that refocuses your
attention can be very therapeutic. The strategies
for grief listed earlier are also helpful for augmenting
medicinal and counseling approaches to depression. (Return
to list)
*If
you or your doctor want more information on psychostimulants,
the University of
Wisconsin Medical School sponsors the End of Life
Palliative Education Resource Center which offers excellent
peer-reviewed articles. Article #61 is about psychostimulants
and antidepressants. You will need to complete registration
information to get into the "Fast Facts" section,
however there is no charge and you do not need to be a
physician to register. |
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This website was created by the Grand
Island Coalition for End of Life Care, a community organization dedicated
to improving end of life care through education, advocacy and support. We
gratefully acknowledge the generosity of KDSI for
their donation of webhosting services. Site design and layout created by Let's
Collaborate! |
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