by Beth Leibson
“When my daughter Lindsey was going through cancer treatment, I was with her all day, every day,” says Barbara. “I only left her to shower or get something to eat when there was someone else around—her father or her cousin. Even when I went to the bathroom, I left the door open and did it very, very quickly.”
Barbara didn’t take a minute for herself, not to read a book or take a walk or talk with a friend. “I didn’t feel anything when I was taking care of Lindsey,” who had acute myeloid leukemia and an almost-immediate recurrence. “I just focused on being with her, taking care of her. I didn’t think about myself at all.” Barbara was simply numb, unaware of the fear and anger building up inside her.
One day, the hospital rabbi came into Lindsey’s room. “He told me, ‘You look like you’re happy,’” remembers Barbara. “I started screaming, ‘I am not happy – how could I be happy? My daughter is lying here in a hospital bed, sick as a dog.’ I was so upset, so angry, that he could say such a thing.”
That irritability, a common sign of stress, is not uncommon among caregivers.
The numbers bear this out. A 2007 study by The Wellness Community found that caregivers are just as likely to be treated for depression and anxiety as cancer patients. Four out of five caregivers report experiencing stress and anxiety throughout the cancer experience. According to the National Cancer Institute, caregivers struggle not only with the stress of the disease itself but also with the responsibilities of caregiving.
They are often unaware of this stress. “Caregivers often walk into my office saying ‘I’m embarrassed that I’m here; I’m not the one who has cancer,’” explains Laura Mosiello, LCSW, oncology social worker and Senior Clinical Supervisor and Director of Programs at New York-based nonprofit, Cancer and Careers. Mosiello works with patients and caregivers both in group settings and one-on-one counseling.
“They tell me, ‘I’m exhausted, I’m upset, I’m scared,’” says Mosiello. “’But whatever I’m feeling, it can’t be as bad as what the cancer patient is feeling.’”
The truth, emphasizes Mosiello, is that cancer is an assault. It attacks caregivers as much as patients. The difference is that the patient is sick, so has permission to delve into the feelings. Caregivers, on the other hand, are expected – expect themselves – to tough it out.
“A lot of caregivers don’t give themselves permission to feel bad, to embrace the feelings that they’re feeling,” explains Mosiello. “They forget that they have to take care of themselves before they can tend to someone else.”
“Be wary of a naked therapist offering a dress,” writes psychologist Beth Miller, Ph.D. If caregivers don’t take care of themselves, they can’t take care of anyone else. Miller explains that being overworked and stressed can leave people unaware of what they need. And if caregivers don’t realize they are stressed, they can’t do anything about it.
What Causes Stress?
“A lot of the stress comes from multi-tasking,” says Richard Hara, Ph.D., MSSW oncology social worker and professor at Columbia University, New York. “Caregivers wear a lot of hats.” They typically do all the housework, manage the schedule, cook the meals, chauffeur the patient, navigate the healthcare system, all while maintaining their professional or vocational lives. Sometimes they pick up extra shifts or take on a second job to make up for what the patient isn’t earning, Hara adds. Being overwhelmed in this way saps a caregiver’s strength and energy.
Perhaps even more important is the emotional piece. Cancer leads to a loss of control, which can be frightening and frustrating for both patients and caregivers. Cancer takes away the established life, the comfortable roles, the supportive family system. And it replaces those familiar feelings of control and self-determination with confusion, questions and fear.
Caregivers face an even greater loss of control than patients because all final decisions -- about treatment options, doctor selection, and even what to have for dinner -- rest with the patient. “The doctors didn’t talk to me,” says Barbara. “They talked to Lindsey.” Her experience is far from unusual; caregivers are often forgotten.
Guilt is common. Caregivers ask themselves: Did I make the right decision about nutrition or exercise; was I wrong to discount acupuncture; did I push hard enough for that prophylactic mastectomy? Not only do caregivers balance their own lives and needs with the patient’s, but they have to handle both internal and external pressures.
“Caregivers often feel that if they’re not doing something, not changing a bedpan or cooking a meal, they’re not helping,” says Mosiello. So they keep busy, maintaining a whirlwind of activity. Taking time for themselves is often viewed as selfish. “Many people think that doing something, being active, is a way to fix the situation. Sometimes, though,” says Mosiello, “it can’t be fixed. Sometimes the best support is to sit and bear witness.”
Signs of Stress
Sometimes caregivers are so busy cooking and scheduling, cleaning and budgeting that they don’t notice that they’re feeling stress. Part of the challenge is that stress indicators are very individual. Some people snap at visitors while others forget their dry cleaning for a week or experience insomnia.
“Who you are before you become a caregiver – like who you are before you have cancer – is who you are after you become a caregiver,” says Mosiello. “How you handled stress before you took on this responsibility is likely the same way you handle it now.”
There are, however, certain general characteristics that can serve as a checklist. According to About Caring for Family or Friends with Cancer, which Hara co-wrote with Susannah L. Rose , MS, MSSW, there are several signs of burnout:
- Irritability
- Sleeping difficulties (either problems getting to sleep or sleeping too much)
- Loss of interest in activities
- Social isolation
- Recurring feelings of guilt and anxiety
Caregivers who find themselves displaying one or more of these characteristics should take stock and try to figure out how to handle the stress. Get dressed, as Miller would say, before you worry about someone else’s wardrobe.
Caregiving requires dedication, love, and determination. It can offer many rewards – many people gain new skills, a greater self-understanding, and a stronger relationship with the patient. But you can only experience the benefits of caregiving if you take care of yourself.
What to do? Whether you're a patient or a caregiver, consider trying these stress-relief techniques.