The pressure from society, environment, and ethics often makes caregivers drift into an inescapable, deep valley. However, whether it is professional psychological support, family understanding, or assistance from social resources, the venues for help have never been far away, but are waiting for those deep in trouble to draw near.
Whether it is in the long-term care center or in the field of hospice, when facing the extended course of disease and the anxiety regarding end of life, apart from the patients themselves, the people most affected are the personal caregivers. They include family caregivers, professional caregivers, such as medical teams or home service providers, care workers, and etc.
In the physical and mental pressure resulting from exhaustion and frustration, only by seeking the solution and support of self-care can one regain inner strength in the process of palliative care.
On-site Care Service Impact of the Professional
Some time ago, Lo Hui-Chun, a counseling psychologist at Mackay Memorial Hospital Counseling Center, saw a post from a nurse in the hospice ward on a social networking site; she wrote, "Today, we sent another six patients to heaven.
Lo Hui-Chun says, "This is actually the daily life in the hospice ward." Talking about these partners who are working together on the front line of medical care, it is not difficult to part ways. At such a highly intense worksite where one may face death every day, one must have a strong psychological quality in order to contend with the endless, traumatic impact day after day.
Lo Hui-Chun believes that the imbalance they face bears the brunt of the collision of professional role values. According to his analysis, because most of the concepts given by medical education today are to help patients move towards recovery, after staying in the hospice ward for long enough, the clinical team cannot help but begin to doubt the meaning of self-existence. Then, a strong sense of guilt and self-blame arises, which finally can lead to burnout. Once this occurs, some will choose to stay away from the hospice site, while others clam up their emotions tightly.
The same situation also exists in the caregivers in the field of long-term care.Faced with the gradual incapacity or deterioration of the long-term care patients, the chronic fatigue caused by long-term wear and tear and physical and mental exhaustion makes them feel powerless and helpless. There is even something known as vicarious trauma.
At this critical moment, what hinders is neither that they have no way out nor is it difficult to seek help from counselors; but rather, the word professional rubs away on them. On the one hand, they know themselves to be hardworking professionals,and yet, they are also caught in great struggle and conflict. On the other hand, they want to maintain their professionalism, worried that asking for help might bring about unfavorable judgment and criticism from others.
"Therefore, even if they know that they should seek professional help, they will hesitate and think it over for a long time," explains Lo Hui-Chun with sympathy.The plight of professional caregivers is more than this as Lo Hui-Chun suggests,"The medical and nursing community are helpers in a broad sense. Because it is a human being they are taking care of, there will inevitably be emotional connections. In particular, nurses stay with patients and their families almost 24 hours a day, so they are the closest to patients. Naturally, they will hear many personal and family stories.”
He once met a nurse who was determined to devote herself to hospice care since she was a child. In the process of caring for a particular patient, whose condition, family situation, and even age were similar to her own mother’s, she was reminded often of the heartbreaking experience of her own mother’s death many years before. The deep-seated trauma brought emotional swings and even gradually interfered with her work.
Facing the deep suffering of these clinical front lines, Lo Hui-Chun provides sincere advice, "Bravely seek professional psychological support. After all, helping people consumes energy, which is also called emotional labor in medical research.”
Lo Hui-Chun points out that dialogue is actually a way to open up for self-care and self-acceptance. Through the guidance of a psychologist, people can face the topic and issues of life and death, and find the most appropriate solution through clarification and understanding.
"The nurse who remembered the pain of his mother's death finally chose to leave hospice care. After moving to other wards, she was able to enjoy her work more," says Lo Hui-Chun with a smile. He suggests that leaving the hospice ward may be one of the solutions for a small number of people, but there are more clinical frontline nurses, who regain their enthusiasm for hospice and life with the assistance of professional counseling.
For professional caregivers whose emotions have not yet affected their life and work, he suggests that they must maintain a balance between life and work and retain a sense of self-care.
"Many people become stuck in professional roles, or resort to self-blame thinking "I should be able to do better.' At the same time, they forget that they are also human beings," observes Lo Hui-Chun. People often forget that professional caregivers are also human, and need to be treated with respect.
Lo Hui-Chun acknowledges, "Only when one's self-awareness is relaxed can one be kind to oneself and to others." He thinks that not only should caregivers look at their own work with a more forgiving attitude, but in the clinical front line filled with enormous pressures, they must also be aware that life is not just all about work. He suggests, "Sometimes through yoga, deep breathing, going on a trip, or other activities, one can gradually realize what one’s personal inner needs are in the process of finding relaxation."
Only when the self is freed from work, the expectations placed on self-care can be realized concretely. Lo Hui-Chun always believes that professional caregivers work by giving a part of their own lives away to others, and because of this responsibility, they are fully committed to burning the wick of their lives, which can easily lead to burn out. Therefore, in terms of self-care, they need to supplement what they give to others with relevant nutrients of life in order to keep themselves burning brightly.
He often encourages colleagues around him that they must have things in life that they once dreamed of doing but have not yet fulfilled. There are many such examples among his medical colleagues that have interests outside of their fulltime professions. One such example is how some people work hard to get a barista license because of their love for the strong aroma of coffee. Another example is those people, who are interested in gardening, so they take time to study gardening therapy. Lo Hui-Chung insists that "The key aspect of self-care is to figure out and do something that you like, something that is meaningful to you and can recharge your well-being."
Understanding and Affirmation Release Multiple Pressures
The physical and mental work faced by the wider family caregivers in the hospice care ward can be quite a different environment than in other hospital wards.
"About 70% of the family caregivers in Taiwan are women, and the first thing they face is gender oppression," according to Lo Hui-Chung. Additionally, he has found that filial piety is like an invisible shackle in many cases, and it is tied to every single family caregiver. He observes, "The family is full of expectations, which can sometimes be unrealistic and unachievable, yet all these expectations are placed on the primary caregiver."
When the patient's condition starts a downward decline or the condition changes suddenly for the worse, both self-blame and blaming others will strike painfully, and the enormous pressure the caregiver bears can be overpowering.
Lo Hui-Chun often looks on helplessly at the clinical scene how the many main family caregivers are often putting the caregiving responsibilities at the forefront, and put their own needs, rights and voices in the background. This sacrifice of oneself for others for extended periods of time eventually leads to emotional distress, relational conflicts, and even physical problems, among which sleep disturbance, headache, neuralgia, and gastroesophageal reflux are the most common. At times, it can also lead to the more severe cases of falling into deep depression.
In this regard, Lo Hui-Chun strongly appeals that the burden of family care should not be placed on the same person, but that everyone should be involved as they coordinate the rotation of caregivers. Even if they really cannot find time to help, they can still find a substitute in order to give the main caregiver a day or two off to recuperate.
Lo Hui-Chun concludes, "Of course, the family support system must also be sufficient through communication. Using clear and open dialogue, the family members can enhance mutual understanding and support and let the primary caregiver know that he or she does not have to shoulder all the responsibilities alone." He believes that only when every family member can learn to appreciate the intense pressure placed on the main caregiver can they then provide the most appropriate support both in substance and empathy. He suggests, "Sometimes it may be just a simple word, a consideration, a gesture, or an understanding. In many cases, it is enough to provide the necessary support for most primary caregivers."