Let’s Talk: About cancer (Part II)

In the last column, I wrote about “Coping with cancer” and invited readers to share with me ways they have found to cope with cancer.

Although I received a few ideas on the topic, I was struck by a question that seemed important to address. “What if I’m not coping at all?” This person went on to say that she was ashamed to admit that she was on a slow simmer every day, carrying out the caregiving of a family member she once loved and now resentment had filled her heart.

The physical and emotional exhaustion of tending to someone with a serious chronic and increasingly debilitating condition is understood to be a demanding and endless round of care giving. The caregiver, often a family member, is needed to accompany the cancer patient to visit doctors, pharmacies, labs, clinics, the emergency room and hospital. But what caregivers are reluctant to admit, beyond the exhaustion and the upending of their own lives, is the burnout of caring. Although worded in different ways, caregivers often struggle with what is called “compassion fatigue.”

It’s a difficult situation to seek help for, since the caregiver is often held in the eyes of others as the strong one, the selfless one, the one who is expected to nurture and soothe through sleepless nights and ever present anxiety. The fact is, long-term caregiving without respite and support can lead to emotional numbing and distancing, and in some cases, overt anger at the person who is ill. It begins to show up with impatience, irritability, emotional outbursts, and in the worst case, actual abuse of the person needing care.

Of course, much depends on the quality of the relationship between the caregiver and the receiver, before the illness. A young mother came to talk to me once about the depression she was struggling with and wondered if there was anything other than medication to help her out of her deep and disturbing funk. In addition to taking care of her two children, she mentioned that she was also taking care of her father who was terminally ill with cancer. He had left the family when she was a teen and had never been seen until a month earlier when he showed up at her doorstep, ill and without resources. Out of guilt and obligation and even with hopes of repairing their relationship, she allowed her father to move in and went about setting up hospice care for him. It was clear that her depression was not caused simply by the demanding care he required, the depression was the anger she had suppressed for years. With the clock ticking she wanted to find the compassion and make peace with her father, but because of his fragile and dependent condition, she chastised herself for the anger that would leak out when she took her time responding to his needs, often pretending she didn’t hear him.

This young woman’s waning compassion is understandable. However, in situations where the relationship between the caregiver and the receiver has not been problematic, compassion fatigue can actually be a more serious condition. The shame that the “good” caregiver suffers can often lead to the condition worsening and leading to serious emotional and physical health consequences. The sense of loyalty and responsibility often leads to people hide their growing insensitivity and so it goes undetected and untreated. No one wants to admit that they have run out of emotional caring, especially for someone they have loved and cared for.

In our Japanese American culture, self-sacrifice is admired; the ganbatte expectation of gallant endurance is what marks a good and highly respected person. In truth, compassion fatigue is actually a normal response to long-term care giving. What is not “normal” is acting and believing as if we have an endless supply of Mother Teresa genes. It is human nature to want to escape a situation that is a constant threat to our wellbeing; and when we can’t escape, we get angry or we get numb. And as our Daruma Psychology would suggest, this running out of caring steam is a signal, a sign that the caregiver needs help. It is not a sign of a deeply flawed character, rather it is our psyche letting us know that it’s time for some self care, a break, even time away to regroup. Often, incidences of child and elder abuse is an outcome of untreated compassion fatigue.

So if you find yourself feeling angry, irritable, and distant from the person you are caring for, talk to a friend, family member, or a professional, to find ways to support your self care. We all need to restore, refuel and re-energize regularly in order to sustain the task of taking care of someone who needs us.

Satsuki Ina, Ph.D. is a licensed marriage and family therapist practicing in Sacramento and Berkeley with specialization in intergenerational trauma. Her Website is www.satsukiinatherapy.com and she can be reached by e-mail at satsukina44@gmail.com. She is also a filmmaker (“Children of the Camps” and “From a Silk Cocoon: A Japanese American Renunciation Story”). The views expressed in the preceding column are not necessarily those of the Nichi Bei Weekly.