Friday, June 27, 2014
One of the great challenges a hospice Chaplain will meet is with the caregiver who is totally worn out. Patients suffering from dementia, Parkinson Disease, and any other debilitating illness require quite a bit of attention and care. Every spouse or family caregiver I have met is dedicated to providing the absolute best they can offer to their loved one. The demands placed upon caregivers sometimes wear the caregiver out. Caregiving expert Patricia Smith states, "Every day in our caregiving role we empty out in order to be present to those in our care. If we continue to empty out without filling up again, we place ourselves in harm’s way. Caregivers often misinterpret their need for selfcare as selfishness or self-centeredness." When this type of fatigue sets in a domino effect of emotions takes place: anger, frustration, and guilt do their deep damage to the heart and soul of the caregiver. Is there an answer? Yes and No. Every hospice is required to provide volunteers to meet a number of different needs: sitting with a patient for a few hours while the caregiver gets out of the house to run errands or just to get out to breathe in fresh air; to meet special needs spiritually, or to provide a sounding board for the caregiver, to name a few. Believe me, volunteers do a tremendous amount of work. Hospices could not function without volunteers. So, that is the Yes answer or at least a piece of it. The No answer has more to do with dysfunction and denial. There are caregivers who refuse the offer of a volunteer and feel that they alone are the only ones who can provide the care their loved one needs. Other caregivers refuse to make the time for their own doctor appointments and their health suffers. Their commitment of time is solely devoted to the needs of their loved one. Any offers of support group activities or the provision of respite care (another wonderful benefit of hospice) are denied. The members of the care team often collaborate on these more difficult cases in order to prevent further caregiver fatigue and health decline of the caregiver. According to Smith, caregivers can still be "healthy caregivers" by creating strong personal boundaries, adapting stress into relaxation and learning to practice daily self-care. They can also be empathetic and supportive of others' suffering without taking on the pain as their own. This is called "empathetic discernment:" the art of knowing personal and emotional boundaries, as well as making choices about what to care about. If you are a caregiver on the verge of burnout or if you know of a caregiver in such a situation and would like to discuss this, please contact me for a compassionate response.