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)