The Family Caregiver: A Four Part Series

Part 2

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 questions both patients and family caregivers pose as mentioned by Rabbi Grollman are poignant.  A look at the dynamics of the family setting will serve to reveal the intensity of the emotions evoked by the questions.

•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.