This
Family Caregiver, as is every other Caregiver, is in need of spiritual
support. She self-evaluates stating she
suffers from a “hardened soul”, religious confusion, guilt, shame, anticipatory
grief, and fear. The reader may add other observations. Because this scenario is not isolated,
Chaplains must include family caregivers in the provision of spiritual support
and care.
There
are other reasons caregivers experience shame from the disease process from
which their loved one is suffering: a
stigmatized disease which reduces the bearer "from a whole and usual
person to a tainted discounted one" (Goffman, 1963) and belief that the ‘caregiver’s’
way of living will be found out and that they will be judged and
criticized.
§A felt sense of detachment from their religious
involvement. When a loved one becomes
ill with a life-limiting illness and they are in hospice care, multiple changes
occur in the life of the family. For
some, it is the loss of participation in their faith community. These caregivers can no longer come and go as
they please as they have many responsibilities with their
loved-one-hospice-patient. To those who
have influence in faith communities, I offer what I hope will be insight and
gentle admonition. Dr. Zachary White describes
the life of a house-bound family caregiver in his article, Inside Out
(http://www.unpreparedcaregiver.com/2011/04/inside-out/):
They’d walk by, leisurely pushing
baby strollers enjoying the late summer nights.
Some would run by. Neighbors
would walk within sight, entering
and exiting my view only long enough to get their mail. Some would
furiously drive out of their driveway in reverse, late for something with
someone, somewhere.
I couldn’t believe no one ever
noticed me. I was looking at them through the bedroom window where my mother’s
rented hospital bed had been placed.
They didn’t notice me. Day after day, hour after hour, though the window
next to Mom’s bed, I stared. They didn’t look back. None of them. I stared and
stared and stared and yet, I was invisible.
I wanted someone to notice me. I
wanted to scream through the bedroom window, “Hey, you! Yes, you! Do you know
what’s happening in here! Do you know? Do you care?” But that scene never played out. And I never
yelled out. And people never looked in. They had lives to live. Places to go.
Calories to burn. Mail to get. Leisure to enjoy. Lunches to make. Errands to run. Appointments to make. As a
caregiver, I didn’t.
How true. As a caregiver, the daily duties at times can appear to be stifling. It is as if the caregiver is a prisoner with
no means of escape even in his or her own home.
As far as attending a church/synagogue/temple meeting, that would be
totally out of the question. Having made
thousands of hospice related visits, I can recall with sadness the answer with
all of its variations to my question, “Has the minister or anyone else from
your church been by to see you?”
Too
often the answer was, “No.” What belied
that answer was a heart that was hungry for the camaraderie, the “fellowship of
the saints”, the common sharing of being together, connecting with the Divine. Instead, Sunday after Sunday, meeting day
after meeting day, the caregiver was with her loved one… alone. For certain, the hospice Chaplain, if
involved with the family, will provide experienced and compassionate spiritual
care. But, the beloved Pastor, Rabbi,
Imam, or other spiritual practitioner is a missing piece of the family
caregiver’s personal spiritual care delivery team. An intervention the Chaplain can make is to
inform and invite the local faith leader to visit the patient and provide
familiar and comforting religious rituals.
•Caregiver guilt and hospice. Caregiver guilt follows at least two paths in
regard to hospice care: First, there is
guilt for not calling upon hospice earlier in the disease process. Second,
there is guilt for calling upon hospice at all! Ken Doka in his article published in “Journeys”,
April 1997, the newsletter for Hospice Foundation of America, relates the story
of Marla and George: “Marla wonders
about such things. Her husband, George, was ill for a long time with cancer. In
the end, he decided to forego a last treatment of chemotherapy. Marla questions
continually whether his decision was correct. She also wonders why they were so
late in summoning hospice. Once they came, he seemed to be more comfortable.
Marla regrets that she did not call hospice earlier.” Then, there is what appears to be the
opposite response. Reluctance to accept
the terminal diagnosis, feeling that calling hospice equates to giving up hope,
and simply not understanding what hospice does are the three main issues
caregivers identify for feeling guilty about even contacting hospice. The experienced hospice chaplain will be able
to gently share some of the following truths:
“Calling in hospice is not an indication that you are a bad caregiver; Enlisting
hospice aid leaves very few people with feelings of guilt later; Having help
can lighten your load so that you can offer the very best
of
your giving; Hospice nurses and volunteers can help you feel confident in
uncharted territory most caregivers are untrained for; Hospice provides
experience with managing pain, dealing with family issues, making final
arrangements, and more; Hospice workers are trained to be discreet and
unobtrusive, bringing aid to the caregiving situation in a quiet, gentle way,
while the primary caregiver remains just that; It is
not the goal of hospice workers that life end sooner...only as comfortably as
possible on its own natural schedule; Hospice workers can help you understand
the body's natural shutdown process and what each new event means; Hospice
counselors are available to speak to family members about issues related to
death and grief; Hospice volunteers can sit with the patient so the primary
caregiver can get out of the house for brief, restorative outings; Hospice
nurses and volunteers offer many wonderful tips for comfort and care; Other
hospice aides are available to run errands, do light housekeeping tasks, and
help with bathing the patient and changing the bed linens; Hospice workers are
excellent listeners at a time when it can be very comforting to find a friend
who understands; Many hospice nurses, aides, and volunteers have used these
services themselves in the past, with someone they love.” (The Hospice Decision,
www.brainhospice.com/TheHospiceDecision.html)
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