SELF-CARE FOR THE CAREGIVER.
by Chaplain John Connor.
People who care for the dying, whether professionals or the family members of the dying person, get depleted by the continual out-flow of compassion. This fatigue has to be managed by caregivers in order to continue to be present for their loved one, or their patient in the case of nurses, social workers,clergy, doctors, therapists and other professionals.
Clinically,“compassion fatigue” is part of a group of related terms including “vicarious traumatization,” “burnout,” and “secondary traumatic stress.” An influential author in the field,Charles Figley used these terms in the seminal book he edited, Compassion Fatigue: Coping with secondary traumatic stress disorder in those who treat the traumatized, published in 1995.
Taking these two words out of their general meaning and into a specific syndrome, Figley “gave a special name, compassion fatigue,to the specific STSD [Secondary Traumatic Stress Disorder] resulting from deep involvement with a primarily traumatized person.” He went on to delineate “compassion stress…. Here, helpers knew about, and were affected by, traumatizing events, but this did not reach traumatic STSD proportions,” (Figley, 2002, p.19).
For example, if a therapist, nurse, clergy, or other helper is serving a victim of incest, rape, warfare or disaster (such as 9/11), the therapist hearing the victim’s story can be traumatized himself--hence the term “vicarious traumatization.” This is a result of over-identification, or counter-transference, in which the therapist is“infected” by the patient’s trauma.
I think the “compassion stress” that hospice workers are subject to differs from most of what is studied and reported on in the literature. For us, it is more a cumulative effect of so many deaths over time, coupled with the fact that all the patients die. There are no cure stories. (However, about 1 percent of our patients do improve to a point at which they have to come off hospice service,because their prognosis has been extended. Their disease has not gone away, but it no longer is in astate that is likely to cause their death in six months or less.)
Still,even though it wasn’t all directly relatable to my situation, the information in Figley’s book is useful and in some cases adaptable to the hospice worker’s situation.
“Hospicestaff, including the chaplain, need spiritual care if they are to function at their best when they are called upon both in a crisis situation as well in their ordinary, daily routine,” (Binkowicz, 2005, p.19).
In classic fashion, chaplains--like other careproviders, whether professional or family--tend to short-change themselves in favor of service to others. Our own needs--including setting aside time for prayer and meditation--can be forgotten in the attempt to do the “greater works” (Coogan, 2001, p. 172 NewTestament).
The illusion, for the excited novice helping professional, is that the rewards of care-giving alone are enough to mitigate the costs of care-giving; burnout, compassion stress, fatigue. Even the family members can initially feel so useful that they are unaware of these risks. In The Resilient Practitioner, Skovholt informs us about the kind of people who tend to take this role: “We are often the great friend who listens, the ‘fixer’ in a relationship, the diplomatic person in a disagreement, and/or the ‘helper’ within the family of origin” (2002. p. 2).
But the costs are there. Professionals—therapists, social workers, clergy, nurses—can burn out and leave their professions, either permanently or for extended leaves. Family caregivers can get overwhelmed and pull back, have their own health collapse, or in extreme cases become abusive or neglectful to their loved one. Caregivers can also consider suicide as they get buriedunder the weight of the other’s needs.
While reflecting on compassion fatigue, I had a realization regarding meaning-making. Following a traumatic event (like I experienced when my baby daughter Sarah died two hours after birth), one of the struggles is to make meaning out of it. A stuck place in me in describing this has been an inappropriate link in my mind: that making Sarah'sdeath “meaningful” would be equivalent to making it beneficial. As in “a lesson from God” or something to “help you grow.”
I reject all of that.
But meaning-making can be seen as this: you had one life before the event, and that life is over. The next life after the event has already started (physically, anyway) but emotionally and spiritually there is a lag, until anew meaning, or changed meaning, is found.
For me, that new meaning was found after taking a trip that my wife and I took after Sarah died, that we actually called our “Meaning of Life Trip.” We drove around the country for several weeks, looking up mentors—but also asking the counter attendants at Subway or Motel 6—and asking them, “What is the meaningor purpose of your life?”
“Compassion stress can be seen in the unsuccessful,maladaptive psychological and social stress responses of rescue/caretaking….The distress and trauma of not having done enough to avert suffering or death is a common secondary stress and secondary trauma response in helpers,” (Figley,2002, p. 26).
An example of this from popular culture was evidentin the film, “The Passion of the Christ.” In a non-biblical scene added by the filmmakers, after having to witness the heart-breaking torture of her son, a point comes when Jesus’ mother Mary runs down an alleyway as Jesus is being dragged off. She literally can’t take it anymore, and even though it is a moment when the son would be in greatest need of his mother, she retreats, at least for a few moments. She is unable “to avert suffering or death.”
That, of course, is an extraordinarily dramatic case of vicarious trauma. Some experts argue that witnessing that kind of event is not vicarious trauma, but primary trauma itself.
In hospice, death is not typically traumatic. When death comes, it is usually the good news. It occurs to me that an important factor in the rescue response in hospice is how we identify with the patient, or more specifically the patient's condition. At a sub-consciouslevel, we ask ourselves of the terminal patient, “If I were you, would I wantto go on living?” Generally the answer for most people would be “No.” The patient is very old, bed-bound, incontinent of bowel and bladder, demented. In this case, the rescue comes at death. The caretaking is the physical, psychological, and spiritual comfort measures offered before death arrives. I think compassion stress in hospice workers is heightened when those comfort measures fail or are limited, leading to the cumulative effect of those failures through many months and years.
SomeStrategies for Relieving Compassion Stress and Feelings of Burnout
In Help for the Helper, Rothschild offers help. Her approach is grounded in the body; she looks to body responses (somatic) as diagnostic tools for problems, and to the body for solutions.
Subsequent to doing an exercise (Rothschold, 2006, page 21) I realized some anxiety responses. Thinking about apatient I’ll call “Martha,” I noticed my breathing tightened, and I squeezed my lips together, which my wife notices me doing when I am stressed. I have felt dread and failure with this patient, because she is depressed for what to me are very sensible reasons: She is a bright woman stuck in a nursing home and she is not going to get out. (Physically and mentally she does have conditions which make her appropriate for nursing home and hospice care.) Martha wants to either get better and go home, or die, and she will do neither any time soon. With her and another patient I’ll call “Deana,” I tend to get anxious during my visits with them, because I have no idea how to help their situation.
Through research into this topic, I am realizing that I am anxious in this situation for two reasons: I am still a novice, and I have faulty expectations of how highly influential I can be in the patient’s experience. In a chapter titled, “The Elevated Stressors of the Novice Practitioner”, Skovholt says, “This over-optimism coexists with fear about one’s skill level” (2001, p. 66).
So, my anxiety travels from opposite directions, crashing in the middle: I simultaneously have “glamorized expectations,” (Skovholt, 2001, p. 65) of saying the perfect thing that is going to transform the patient’s life right away, and fears that my skills, knowledge, and experience are somehow inadequate, making me feel useless.
Among many strategies, Rothschild suggests “sensory anchors” to access a “safe place”(2006, p. 120 ). Consistent with the author’s somatic focus, the technique uses one or more of the five senses in service of finding the safe place. “An effective sensory anchor pulls the focus away from the distressing material or memories and brings pleasant memories to the forefront where they can be used for support” (p. 121).
An example is given of Faith, a therapist who works with pediatric cancer patients. Some die, which depresses her, so she questions her career choice, but then is able to move on out of that feeling. But usually she moves out of it only after feeling frustrated by what she has been feeling. Her anchor was found in the elation of cure experiences that some children get, and in which she joyfully shares.
One tests an anchor by remembering mild stress experiences, and then bringing the anchor to bear to see if it mediates the stress. Robert, a prison counselor, is invigorated and happy when he plays handball. Realizing one particular shot is his favorite, he repeatedly does the same move while making the physical movement smaller and smaller, until he is able to mentally experience the shot withoutactually moving. He can enjoyhandball during a client session just by thinking about it.
Rothschild even makes the novel suggestion that, on days you know you will see a client with whom you feel particularly vulnerable, you can designate an article of clothing as a “bullet-proof vest” and wear it on those days (p. 135).
Reflecting on some of these ideas, I realized that I feel uncomfortable when I stand while visiting with patients. This is why I have brought folding chairs with me a few times. I also don't like to counsel patients in the hallway. After being roused from their beds and put in a geri-chair (a padded reclining wheel-chair) patients will sometimes be put in the hallway for stimulation. Realizing this more fully, I have decided I will accept my pastoral authority and move patients back into their rooms when I need to talk with them. I will also find a solution to the chair problem, even if it means continually carrying folding chairs with me.
Controlling Uninvited Images
Tina, a rape crisis counselor, was having trouble with involuntarily visualizing the rapes of her clients – and in the firstperson, as if the violence were happening to her. This is an example of vicarious traumatization.
Rothschild taught Tina this exercise: Picture a blue ball, 12 inches in diameter, three feet from your chest. Now change the color in your mind's eye. Now change the size of theball, and the distance it is from you. [When I tried this I also made the ball rotate vertically, and then horizontally.]
Next Rothschild suggested Tina choose a pleasing activity. She chose watching the Wimbledon tennis championship that she enjoys on TV. The consultant asked her to imagine playing in the game herself, then switch to being an observer of the game. Eventually, she could apply this exercise to her work and control how much she visualized while hearing stories of rape, (2006).
“To help her avoid… the risks of compassion fatigue…the therapist must learn to stay in her own chair--that is, to feel her own body and her own emotions, and to limit the imagery and mirroring that would pull her into the client's chair,” (Rothschild, 2006, p. 201).
These are wise words. Compassion and empathy are wonderful attributes, and necessary to those in the helping professions. It is when we over-identify with the other, tipping our balance too often away from ourselves, ourself, that we begin to fall into compassion stress. In a sense, the novice wants to sit right in the client’s chair with them, thinking that the greater the closeness, the better the healing--and the better the healer.
Empathy with professional distance, and active self-care, is what can make the professional helper a long-distance runner in her or his profession. Concrete steps such as exercise (“Research suggests that physical exercise can be highly effective in combating the emotionally stressful parts of the work,” Skovholt,2002, p.155), regular peer consultation, restorative play, paying attention to your body’s reactions, humor, spiritual practice, and solitude are major areas that contribute to the on-going well-being of the caregiver. Taking this kind of care of oneself puts the caregiver in the best position to “stay in her own chair,” and behappy doing it.