For the family caregiver, caring for the
hospice patient in the home is a noble endeavor; however, it is one that can be
fraught with emotional, physical, and spiritual challenges. Rabbi Earl Grollman, in his address, In the Face of
Insanity: How Do Caregivers Maintain Their Own Sanity, given at the 25th
Anniversary Conference of the National Institute for Jewish Hospice in 2010
provides great insight when he states:
A
religious crisis is not infrequent during their trauma. “Are there special
prayers or ceremonies that they value?” “How would they want their religious
holidays to be commemorated?” “Are there favorite hymns, Bible readings, daily
devotions, that offer them a source of serenity?” “Is there a clergyperson who
they would like to see?” “Are there special ritual objects that they would like
close to them?” ( A Star of David made my mother feel very comfortable in a
wonderful Catholic hospital.) Do they ask, “Why me?” “How could God do this to
me?” “Is it God’s will?” “Am I being punished?”
•The relationship between patient
and spouse (now the caregiver). How is the caregiver spouse handling the
sometimes gruff manner of speech of the patient? Wounded feelings? Impatience? Anger? Do painful statements said by the caregiver
to the patient (that would never be said if exhaustion had not set in) cause
the caregiver remorse, regret, guilt?
•The physical demands of caregiving.
Without a Hoyer Lift the caregiver may suffer back strain and pain. There is the frequent changing of soiled
diapers, which requires moving the patient, removal of and changing of
clothing, and bedding. There is the
daily bath routine that creates its own clean-up work. Then, there are the meals that may or may not
be eaten without significant time spent on clean-up. I shake my head at times when I read
guidebooks for the caregiver of a hospice patient when advice is given on
achieving six hours of sleep per night.
For many caregivers that is not possible.
•The influence of the illness. There
are others in the family circle affected by the hospice diagnosis. Are there children of the patient that are
suffering? Teenagers? Adult children?
What are their feelings? How are
they managing? What spiritual pain are
they feeling? Do they ask, “Why me?” “How could God do this to me?” “Is it
God’s will?” “Am I, Are we being
punished?” (Grollman, 2010)
These
dynamics leave hospice Chaplains grasping to answer the question of “What to
do?” Rev. Alice Tremaine, a
Chaplain with Hospice of the Bluegrass, affirms the significant benefit a
hospice Chaplain bring to patients, and I add, to their families when she
writes in her PlainViews article, “The Case for the Preacher-Nurse:Integrated Spiritual Care in Hospice Settings and
How This May Benefit Other Health Care Settings” (PlainViews, 4/3/13 Vol. 10 No. 5):
Spiritual
pain may be more pressing, especially at the end of life.
Some
of the unique contributions we bring as chaplains include:
•
Training for listening: We may be able to hear important health-related
information that patients may not be able to tell nurses and doctors;
•
An identity and calling as healers, practiced through healing rituals and other
therapies such as prayer, meditation, deep breathing, etc;
•
Our work is rooted in relationship, where healing takes place. Dr. Saunders has
said, “We are the medicine.”
Patients
have the expectation that they can engage in reflection, contemplative
practices and rituals with chaplains.
The
attentively listening Chaplain, practicing a calling as a spiritual pain
healer, who has built a trusting relationship with the family can, indeed, be
the medicine the family needs for the crisis in which they find themselves.
Building a Plan of Care for the family in crisis requires identification of
Goals/Expected Outcomes and Interventions.
As is the case in building a Plan of Care for patients, so it is with
their family. A discussion of what they
would like to see happen in their lives will identify the Goals/Expected
Outcomes and the Chaplain will share Interventions to assist meeting those
goals.
