Counseling Today, Cover Stories

Helping families cope with cancer

By Laurie Meyers November 26, 2018

Cancer. The word alone can evoke terror amid visions of painful treatments and possible early death. Even though many advances have been made in cancer treatment, and despite the fact that heart disease is the actual No. 1 cause of death for adults in the United States, cancer is the diagnosis that many people fear the most.

Receiving a cancer diagnosis is often a devastating blow, not just to cancer patients themselves but to their families. At a visceral level, it is easy to imagine how frightening a cancer diagnosis must be for the patient, but many people — including the families themselves — often underestimate the emotional toll the disease can take on loved ones.

Dark times

Cancer casts such a dark shadow that licensed clinical marriage and family therapist Maya Pandit often encourages clients to refer to it as the “C-word” in an attempt to rob the term of its power. Cancer “is such a ‘big bad’ — not just because it can cause death but because the treatment is difficult and painful,” she says.

For family members, this means grappling with the fear of losing their loved one while hoping for a “cure” that often requires debilitating treatment. Pandit, who is trained as a medical family therapist, a specialized form of family therapy for individuals, couples and families who are coping with physical illnesses, notes that watching a loved one suffer can be more difficult than enduring the suffering oneself.

Managing physical illnesses such as cancer can be isolating and bewildering for patients and their families alike. That feeling of isolation, coupled with the stress of diagnosis and treatment, often strains family relationships — not just between the patient and other family members, but among family members themselves, Pandit explains. Her goal is to help families and couples cope with the reality of the diagnosis while providing support for the patient and one another.

When families are confronted with a cancer diagnosis, their coping strategies often follow a kind of all-or-nothing approach, Pandit says. For some people, the reality of their loved one’s illness is so painful that they refuse to talk about or even acknowledge it. Instead, these family members go on as if the cancer doesn’t exist and everything is fine. In contrast other people attempt to manage their anxiety by becoming hypervigilant and centering all aspects of daily life on cancer, Pandit says. Operating under either of these extremes only makes responding to the crisis more difficult, she adds.

As Pandit explains, getting each family member’s “illness story” is an essential step because it allows counselors to uncover the emotions and difficulties that have arisen from the diagnosis. Then counselors can begin helping the family find a more balanced way to cope. The illness story encompasses each family member’s experience of the crisis, which Pandit solicits by asking questions about when the symptoms started, when and how their loved one was diagnosed and how it felt for the family member to hear the diagnosis. These basic questions encourage a conversation that can help to verbally unlock clients, allowing Pandit to begin unwinding the emotional knots that keep family members from facing the cancer.

With clients who are hypervigilant, Pandit’s goal is to “open the door” to the thought that the cancer already plays a big role in their lives, and if they allow it to always be the primary focus, it will consume all family interactions.

“I often do an exercise in which I ask family members to fill out a pie chart of their lives and how much cancer has taken over,” she says. “We talk about the ways cancer has impacted their daily lives and the creative ways to take back what they can.” Activities such as watching TV shows and movies together or reading the same book and then discussing it serve not only as a distraction but also give family members something to talk about that isn’t related to cancer.

On the other hand, Pandit says that asking open-ended questions or talking about some of the common challenges that families coping with cancer face often helps resistant clients become more willing to speak about what they are experiencing. “If I make sure to be patient and as matter-of-fact as possible, even the most closed people open up at least a little,” she says. “I find that people want to talk but sometimes need time, space, a person who won’t shrink at the topic and, occasionally, some privacy.”

Pandit adds that the most frequent feedback she receives from family members is that once they have opened up and talked about their struggles, they feel lighter. “Talking about how people feel more often than not makes them feel as if they are not alone — that they can handle things one day at a time,” she says.

Family dynamics

Counselors should also keep in mind that each family member has his or her own individual and unique relationship to the person with cancer, says licensed professional counselor (LPC) Kerin Groves, who has worked with older adults in retirement communities, assisted-living residences, nursing homes and home care settings. “Relational dynamics are part of the family system, which often includes old baggage and unfinished business such as wounds or secrets from the past,” she says. “It is imperative that therapists ask each [person] about that individual relationship.”

Among the questions that Groves, an American Counseling Association member whose specialties include grief and loss, suggests that counselors should ask: “Who is this person to you? What does this diagnosis mean in the context of your relationship? What is the nature of your relationship to the patient, both past and present?”

“In that relationship, what are the sparkling gems and what are the sharp rocks? For example,” Groves says, “I have worked with family members of cancer patients who had deeply conflicted negative feelings about the patient, but they were aware that it was not socially proper to say so. They could either stuff their true feelings and experience inner shame and guilt, or they could speak out and experience open shame and guilt — quite a lose-lose scenario. In these situations, a therapist can best serve the family by providing a safe space for whatever needs to be vented, with no judgment.”

“Setting aside any conflicts in family relationships can be as simple as asking for it,” she says. “A counselor should not be afraid to pose the question: What relationships are you worried about right now that are distracting you? What do you need from [a particular family member] in order to set this aside for now? And what does [that family member] need from you? What needs to be said between you and [the family member] in order to move forward with more peace?”

“A counselor can be a rational outside resource in scary times,” Groves continues. “Family members make many critical decisions, and they need a safe place in which to explore options out loud and be heard, encouraged, supported, validated and attended to.”

A source of nonjudgmental support is particularly important because family members often fail to recognize or validate their need for emotional support, Pandit says. “It’s like, ‘You [the patient] are the one with cancer. What right do I have to be upset?’”

Pandit discourages family members from engaging in what she calls the “pain game” — a kind of comparison to determine who is in the most pain. She tells families that pain is pain and that it needs to be addressed, regardless of who is harboring it or the circumstances of those around them.

Mary Jones, an LPC who counseled patients and families during her 20 years in an oncology facility, agrees. She says that most of the adult family members with whom she worked, both in family counseling sessions and in a support group for caregivers, experienced debilitating emotional and physical side effects. These clients regularly reported being unable to focus, having trouble making even small decisions and becoming easily overwhelmed. With their worlds being transformed, sometimes overnight, by a loved one’s cancer diagnosis, some clients felt so disoriented that they wondered if they were going crazy, Jones says.

These family members were often irritable, especially if they were not sleeping well. They felt a pervasive sadness but were often afraid to cry lest they further upset other family members and friends. Physical symptoms such as backaches and stomach issues were also common. Not surprisingly, Jones says, the turmoil often affected these family members’ work lives and personal relationships. 

As Groves points out, counselors may not be working with cancer patients or families in a typical 50-minute therapy session. “Counselors working in cancer treatment centers, infusion clinics, oncologist’s offices and other medical settings may do mini-interventions of 15 minutes between physician visits, or two-hour support group meetings, or brief encounters in hallways or treatment rooms. In these settings, a counselor’s role should simply be [to act as] a calm presence. They are to listen, support, be a container for powerful emotions — including angry rage or hysterical crying — and provide warmth and acceptance.”

A life-threatening illness typically necessitates a major shift in roles and responsibilities within families. One of the things counselors can do is help clients prepare for and cope with these changes in family structure, says licensed marriage and family therapist Ryan Wishart, who also specializes in medical family therapy. For example, a mother with breast cancer who will no longer be capable of doing the bulk of the child-rearing would need the father or other family members to step in and shoulder more responsibility in that area. If the person with cancer is the family’s primary breadwinner but is too sick to work, it may require other family members finding additional means of financial support. Housework may need to be distributed differently, and older children may have to become more independent.

Wishart helps families assess and redistribute their duties by creating a deck of cards that have major roles, responsibilities and chores written on them. “We discuss who ‘owned’ which cards prediagnosis and ways that they can be redealt,” he says.

Groves raises a similar point. “There can be very practical concerns that lie under the surface and get ignored in the medical crisis,” she says. “For example, if one family member insists that the patient be able to go home but dumps the caregiving duties on to someone else, emotions can erupt. A counselor can help by walking the family through the practical options that are both available and realistic.”

Giving care

Caregiving is often one of the most difficult, emotional and divisive issues faced by families with a loved one who has cancer. Family members must work through questions such as what kind of care to pursue, whether a loved one can be cared for at home and who will provide the care.

“Many people get quickly overwhelmed with the details of the cancer journey,” Groves says. “There are just too many decisions and no crystal ball to see the outcomes of each choice. Treatment plans that are too aggressive are uncomfortable for many people, but cultural norms may prevent family members from disagreeing or questioning a medical professional. Palliative care can seem inhumane to some, sending the message that they have given up or don’t want to be bothered with the patient anymore. In addition, I have seen well-meaning doctors who refuse to give up and wait until just before the patient dies to call in hospice — much too late for the family and the patient to benefit from the supportive services they could have received in making the journey through death.”

Families may also disagree about what treatment should be pursued, forgetting that the choice ultimately resides with the patient unless he or she is no longer competent to make the decision. But even after the family has decided the where, when and how of care, providing it can be a time-consuming endeavor that is both emotionally and physically taxing. In addition, caregiving often requires difficult role adjustments or role reversals. For instance, parents battling cancer may become like children to their own children. Relationships may take on decidedly unromantic aspects when one spouse or partner needs to play a more parentlike role for the other spouse or partner.

It can be especially challenging and humbling for parents to give up so much personal control to their children, even if those children are now adults themselves, says Cheryl Fisher, an LPC whose areas of specialization include counseling families and individuals with cancer diagnoses. However, counselors can help these parents see this shift in a different light. Fisher, an ACA member, says she often reminds parents of all the years they spent getting up in the middle of the night or staying up late to give care to family members. Now it is their time to receive and accept care from others, she tells them.

With adult children, Fisher says, the adjustment usually involves probing to see what aspects of caregiving they feel confident about and which ones give rise to discomfort. Personal hygiene is a particularly sensitive area, she points out, because sons are typically uncomfortable with the thought of bathing their mothers and daughters are typically uncomfortable with bathing their fathers. Fisher validates this discomfort, letting her clients know that it is perfectly acceptable to look for home health care support for that particular task. She then talks about other areas of caregiving with which the adult children might be comfortable, such as housekeeping, cooking, doing yardwork or providing transportation.

Fisher also helps adult children who are geographically distant from their parent come up with ways that they can participate with caregiving. For instance, they may be able to contribute financially or pragmatically, such as by locating home health care support or paying for respite care. Perhaps they have enough vacation time to fly in every few months to visit and give assistance to the parent. Distance caregiving can also consist of smaller personal acts such as sending cards and care packages or FaceTiming with a parent while the sibling or other family member who provides most of the in-person care gets a much-needed break to take a nap or make phone calls.

Pandit says that couples going through a cancer diagnosis often don’t know how to talk to each other about the ways that caregiving changes the dynamics of their relationship. She helps these couples explore means of ensuring that caregiving doesn’t take over the whole of their relationship — for example, by dedicating time to just being partners again through activities such as a regularly scheduled date night. She also encourages couples to make sure they continue to talk about things other than the cancer.

Cancer foments a significant amount of fear and guilt, and caregivers often feel that if they make a “wrong” decision or take time for themselves, their loved one will get worse or even die, Jones says. This makes it even more difficult to convince caregivers to engage in self-care. Jones explains to caregivers that to properly take care of their loved ones, they must also take care of themselves. With male caregivers, she found it particularly helpful to tell them to picture themselves as a car. As a car, the caregiver must go to many destinations. Cars, of course, require gasoline to run. So, Jones would ask, what happens when the car makes a lot of trips without stopping to fill up the gas tank?

Similarly, Jones would direct women to picture themselves as a pitcher full of resources and imagine that everyone surrounding them was holding a cup. With so many cups to pour, unless the caregiver refilled her own pitcher, her loved one’s cup would eventually go dry.

Jones also recommends that clients who provide care to a family member with cancer literally schedule self-care for themselves. Making an appointment for self-care — just like making an appointment for the next cancer treatment — helps reframe it so that the caregiver starts viewing self-care as a means of survival, not a selfish desire, Jones says.

True self-care goes beyond taking breaks, getting enough sleep and eating healthy regular meals, and the source is different for everyone. Jones urges clients to identify the things that make them feel nourished. “What recharges your batteries? What fills your cup back up?” she asks. Jones says she finds even a little time interacting with nature rejuvenating, but for others, it may be practicing yoga, meditating, spending time with animals or reading a good book.

Something else that Jones urges counselors to do is to ask caregivers to identify things they can “outsource” that would make life easier. This might involve thinking of friends willing to volunteer a few hours of house cleaning each week, asking a neighbor to walk the dog or seeing if a church care group would be willing to make and deliver 10 days’ worth of casseroles.

Because caregivers are continually fighting burnout, guilt and isolation, Jones thinks that group therapy is a particularly effective method of support. Among others who understand their struggles, caregivers and other family members can more freely give voice to emotions that they don’t necessarily feel comfortable expressing anywhere else. They can admit to being tired, angry, resentful or hopeless without fear that they will be judged poorly. Groups are also a good place for brainstorming and solving problems, Jones says. Individuals can share their challenges, and other group members can talk about what has worked best for them.

Coping with the unknown

The treatment process for cancer is usually hard on everyone. Pandit says the constant ebb and flow of watching a loved one struggle and not knowing for certain that it is going to be worth it in the end is often agonizing.

Groves agrees. “An unknown prognosis is very hard for families [and patients] to tolerate,” she says. “The fear of the unknown is powerful. Facing a known outcome is certainly frightening, but at least there is little or no ambiguity. With a terminal prognosis, there are fewer choices to agonize over. There may be more powerlessness but fewer regrets.”

A terminal diagnosis can sometimes be a “strange kind of blessing,” Pandit says. Knowing the end is coming often encourages loved ones to say things they might never express otherwise, both to the person who is dying and to those who will be left behind.

“Whether the diagnosis is terminal or chronic, a good counselor will bring up universal existential concerns … [such as] fear of incapacitation, of death, suffering, aloneness, meaninglessness, and normalize them,” Groves says. “This allows family members to recognize that their fears are common to the human experience and that it is safe to talk about them. The counselor may not have a solution but does offer accompaniment on the journey.”

That perpetual state of suspended animation that accompanies an unknown diagnosis is painful, but for some family members, it is still preferable to admitting that it is time to let go. Cancer patients are often the first to recognize this truth, and as long as they still have all of their faculties, it is ultimately their choice whether or when to discontinue treatment, Fisher notes. However, family members sometimes remain in denial and may refuse to acknowledge the patient’s impending death, even pushing for continued treatment.

Jones recalls a female patient whose husband had accepted that the time had come to cease treatment but whose adult children kept insisting that the family could “find another way.” The constant badgering was completely exhausting to the patient. She finally turned to Jones and said, “I need you to look my kids in the eyes and say, ‘Your mom has three to six months to live.’” Jones followed the woman’s wishes and then urged the children to ask themselves how they wanted to spend the last months of their mother’s life.

Fisher had a 36-year-old female client with a terminal diagnosis who had moved into inpatient treatment. The woman’s mother kept bustling into the room with vases of sunflowers and other things. Her stated intent was to make the room pretty until her daughter could come back home. The daughter, in obvious distress, yelled, “Mom! I’m not coming home!”

Fisher asked for some time alone with the client and helped her come up with the words that she needed to say to her mother, which were, “I’m going to die, and I need you to be here with me.”

“Counselors often worry too much about techniques and forget to just listen,” Groves says. “Our presence is our best intervention.”

 

****

 

Supporting the client who has cancer

“Fear is the constant companion of the cancer patient,” says Kerin Groves, a licensed professional counselor (LPC) and American Counseling Association member. “Fear that the diagnosis is wrong, fear of telling young children too much or not enough, fear that the surgeon didn’t get it all, fear that the chemo or radiation missed a few rogue cells, fear [during] remission [of] the cancer coming back, fear of getting a new type of cancer, fear of long-term effects of chemo or radiation, fear that tiny bump or growth is cancerous, fear of going out in the sun after skin cancer, fear of every stomachache or headache, fear of loss of sexual function or cognitive function, fear of social stigma with body disfigurement and so forth.”

“These chronic fears are exhausting and can exacerbate into an anxiety or mood disorder,” Groves continues. “Acknowledging fears is the best way to take the power out of them, so invite a patient to tell you all the fearful thoughts that run through their head. They can write them down or say them aloud, with no rules and no judgment. ‘Let’s release them all,’ I tell patients, ‘like taking out the trash. We don’t need them stinking up the house.’”

One of Cheryl Fisher’s current clients had cancer for many years before achieving remission and outliving the original prognosis. However, the client recently reported that she can feel her fear returning. She told Fisher that she doesn’t want to let the fear in because she is concerned about what it might do to her mentally and to the cancer itself. Fisher, an LPC and ACA member, told the client that when people fight back against what they’re feeling, it causes stress hormones to rise. So, ultimately, she says, it is better to face the fear head-on.

“When I’m sad or angry or afraid, I like to pull it outside of my body and look at it,” Fisher told her client. “Fear, you’re here. What is prompting this? What is it trying to tell me?”

The client told Fisher she was afraid that she was already living on borrowed time. As a consequence of this belief, the client was in essence just waiting for the cancer to come back, Fisher explains.

To counter the client’s sense of helplessness and being “stuck,” Fisher acknowledged that neither of them could prevent the cancer from returning, but she asked the client to consider what she did have control of. Did the client have things she had been putting off that she would like to do? Did she have things she was holding on to that needed to be said?

Another of Fisher’s clients was a newly diagnosed cancer patient who seemed to want Fisher to “somehow absolve her from her journey with the diagnosis.”

“I don’t have a magic wand,” Fisher told her. “There’s nothing I can say that will lift you from this journey that you have to go through, but I can promise that I can be there with you side by side during the journey. I can’t solve this for you, I can’t make it go away, but I promise you I will be there with you.”

Fisher notes that being an unflagging source of support is perhaps the most essential role that counselors can play with clients who are seriously or terminally ill. Sometimes, a cancer patient’s family or friends cannot or will not endure their inherent fear and stress to be by their loved one’s side, but counselors can step in and fill that gap, she emphasizes.

“Existential concerns are within all of us, with or without cancer, but cancer and other critical illnesses have a way of bringing them to the forefront,” Groves says. “The work of [Viktor] Frankl and his logotherapy concepts are very valuable for counselors to read and learn. While in a Nazi concentration camp, Frankl came to understand that each of us has a choice in how to respond to our circumstances, no matter how horrific. When all a human’s [other] choices are taken away, we still have the choice of facing our suffering with dignity. This can be empowering for a cancer patient, when presented by a sensitive counselor who honors the values and humanity of the patient.”

— Laurie Meyers

 

****

 

Additional resources

To learn more about the topics discussed in this article, take advantage of the following select resources offered by the American Counseling Association:

Counseling Today (ct.counseling.org)

Books and DVDs (counseling.org/publications/bookstore)

  • Counseling Strategies for Loss and Grief by Keren M. Humphrey
  • Mediating Conflict in Intimate Relationships, DVD, presented by Gerald Monk and John Winslade

ACA Mental Health Resources (counseling.org/knowledge-center/mental-health-resources)

  • Resources for Professional Counselors

Podcasts (aca.digitellinc.com/aca/store/5#cat14)

  • “When Grief Becomes Complicated” with Antonietta Corvace (ACA252)
  • “Integrated Care: Applying Theory to Practice” with Eric Christian and Russ Curtis (ACA149)

Webinars (aca.digitellinc.com/aca/store/5#cat46)

  • “ABCs of Trauma” with A. Stephen Lenz (CPA24329)
  • “Children and Trauma” with Kimberly N. Frazier (CPA24331)
  • “Counseling Students Who Have Experienced Trauma: Practical Recommendations at the Elementary, Secondary and College Levels” with Richard Joseph Behun, Julie A. Cerrito and Eric W. Owens (CPA24339)

 

****

 

Laurie Meyers is the senior writer for Counseling Today. Contact her at lmeyers@counseling.org.

Letters to the editor: ct@counseling.org

 

****

Opinions expressed and statements made in articles appearing on CT Online should not be assumed to represent the opinions of the editors or policies of the American Counseling Association.

1 Comment

  1. Brendan Grainger

    I can relate to much of what has been said here. My wife had various cancers for 10 years before she finally died. Started with Breast cancer, followed by cancer in the other breast, colon cancer and finally stomach cancer. We avoided talking about the elephant in the room until she was given 6 months to live . We were advised by a palliative care worker to talk about it. It was surprisingly easy to talk about it once we had the final prognosis. We quickly found out that neither one of us had wanted to bring it up for fear of upsetting the other … we both wanted to be ‘strong’ for the other.

    Reply

Leave a Reply

Your email address will not be published. Required fields are marked *