There can be many reasons a patient is difficult to care for.
Ever since John and Barbara Gomes said “I do” 45 years ago, John Gomes has always been in the driver’s seat—literally. “He loves to drive,” says Barbara Gomes. Unfortunately, his driving days ended in October 2013 when the 70-year-old Bridgewater, Mass., resident began taking pain medications for pancreatic cancer. That’s when his wife got behind the wheel, driving him to Boston for chemotherapy every two weeks. And that 90-minute one-way commute was anything but pleasant. “John is very independent,” she says. “He hates not being in control—of his cancer, his treatments, his ability to drive.” Once on the road, his pent-up anger filled the car, she says. He would yell about how she was driving and about how other people were driving, she adds, making an already difficult task even worse. “He was snappish,” she says. “It’s not the John I know.”
When Behavior Becomes Problematic
The list of things caregivers do can seem endless—including making sure patients take their medications, keeping the kitchen well stocked with healthy foods and serving as a liaison to the health care team. What should never be on that list is becoming the subject of abuse and misplaced emotion. Unfortunately, a cancer diagnosis can turn even the nicest person into a cantankerous patient. “Feelings of anger, resentment and anxiety are understandable when faced with a life-threatening disease,” says John Peteet, a psychiatrist specializing in psychosocial oncology at Brigham and Women’s Hospital in Boston.
Patients who already have challenging personalities might find their cancer-fueled emotions nearly impossible to contain. The result: All that angst gets directed toward the one person trying to make things better—the caregiver.
Sandra Gordon knows firsthand how this feels. In 2009, the Weston, Conn., resident offered to look after her sister-in-law Nancy, who was undergoing treatment for ovarian cancer. “Nancy has a polarizing effect on people, but we had always gotten along OK,” Gordon says. Things started off rocky, however, and then quickly went from bad to worse. “Nancy turned away her friends after I invited them over. She picked a fight with her brother—my husband—while staying with us.” Gordon’s caregiving lasted less than a month. “The situation was too toxic for our family.”
Sometimes the disease itself can affect a person’s behavior. For example, brain tumors can make a normally docile patient abusive. “Cancer can metastasize to the brain from other parts of the body, causing memory loss, confusion and personality changes,” Peteet says. A buildup of liver toxins can alter thought processes.
Behavioral changes also can be attributed to the very treatments intended to make a patient better. Steroids can heighten hostility. Pain and nausea medications can cloud thinking. And then, there’s the cognitive dysfunction known as chemobrain. Imaging tests in some patients who have received chemotherapy suggest that certain parts of the brain that monitor thought processes, behavior and inhibition become smaller or less active after treatment. This might make it difficult for a patient to control actions and words.
Dealing with a Difficult Patient
Identifying the reason a patient has become moody, antagonistic or more demanding is a helpful first step in dealing with the behavior. It’s important to take action to make life more agreeable for both the caregiver and the patient before things get so heated that the caregiver wants to throw in the towel. “Behavioral issues are every bit as addressable as an impaired appetite or a wound that won’t heal properly,” says Richard Hara, assistant director of field education at the Columbia School of Social Work in New York. These suggestions can help caregivers navigate trying situations.
“It’s beneficial to talk to others who are going through similar experiences and who can share coping strategies and offer a shoulder to lean on,” —Richard Hara
Get help from the health care team > Caregivers should use the patient’s health care team as a go-to source of information and advice. “Caregivers need to let the team know about behavioral changes and anything unsettling that’s happening at home,” Peteet says. If anxiety or depression is a problem, medications might help. If a treatment is to blame, a doctor may be able to prescribe a different drug or change the dosage. Hara encourages caregivers to speak up about their concerns. “Don’t be afraid to ask questions like ‘Why is the patient acting this way?’ or ‘Are there any medications that can help manage this behavior?’”
Find a go-between > Some caregivers find it helpful to have an outsider listen in and share suggestions. If the patient’s health care team doesn’t include a social worker or psychologist, caregivers should ask for a referral. This professional can facilitate conversations between the caregiver and the patient so that everyone’s concerns and needs are addressed. “I often ask a patient what the caregiver could do differently that would be more helpful,” says Bruce MacDonald, a licensed clinical social worker who works with oncology patients and their families at the Dana-Farber Cancer Institute in Boston. “Then I ask the caregiver a similar question: How can the patient help you help him better?” The goal is to get both parties talking to reach a mutually respectful agreement.
Rally the troops > Caregivers should call a family member, friend or respite agency for relief after a particularly trying time. When Barbara Gomes realized that her worst hours with her husband were in the car, she asked their son to take over the driving duties. “I get a break, they get some quality time, and I’m not stuck in a car with someone who berates me,” she says. Support groups—those that hold regular meetings and those that converse online via chat rooms—can provide a much-needed outlet (see sidebar). “It’s beneficial to talk to others who are going through similar experiences and who can share coping strategies and offer a shoulder to lean on,” Hara says.
Practice self-care > A caregiver’s physical and mental health should always be a priority, because it can directly affect the patient’s quality of life and treatment outcome. “Being a caregiver can be an incredibly stressful job,” MacDonald says. “Be sure to pencil in time every day to relieve some of that stress: Go out or talk on the phone with friends, exercise, meditate, and don’t shortchange your sleep.”
Try some coping tools > If a patient’s behavior has the caregiver on edge, Hara recommends the caregiver tap the power of mental imagery to take a psychological timeout. Caregivers should distance themselves from the patient, take deep breaths and picture a peaceful scene, staying in the moment until they feel calm enough to re-engage. Other tricks caregivers can try: change the subject; ignore a topic of conversation that tends to be a landmine; switch up the daily routine to give the patient something new to focus on; and of course, set and stick to firm boundaries. This last one is especially necessary if the patient has come to expect the caregiver to do everything for the patient despite being able-bodied. If the patient’s healthcare team says the patient is capable of completing a task, the caregiver should encourage the patient to do it even if the patient complains or becomes belligerent.
Practice forgiveness > Anyone is bound to snap when pushed long and hard enough by someone in a foul mood. When caregivers lose their cool, they should give themselves a few minutes to rein in their emotions via a mental timeout and then acknowledge that they acted inappropriately. Next, they should talk about ways to ensure the situation doesn’t continue to repeat or escalate. Sometimes, the way a caregiver says something makes all the difference.
It’s a fact that cancer changes those who have it. “The person you are caring for will never quite be the same person [as] before the diagnosis,” Hara says. With this in mind, caregivers should try to view difficult behaviors as the health-related issues that they are, and not as personal attacks.
> Caregivers may become the objects of a patient’s misplaced anger, resentment and anxiety.
> It’s a good idea to seek outside help in addressing a patient’s moodiness or antagonism.