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Caring for the Caregiver FAQ

Cancer breeds questions. At the U-M Rogel Cancer Center, we face tough questions every day - in our clinics, our laboratories, our classrooms and our community - and we know we're only as good as our latest answer. In this "Frequently Asked Questions," we explore an aspect of cancer diagnosis and treatment too often overlooked: taking care of the caregiver. We've asked Laurel Northouse, Ph.D., R.N., F.A.A.N., professor of nursing and co-director of the Cancer Center's Socio-Behavioral Research Program to help us understand the special needs of the loved ones who surround the patient. Dr. Northouse is one of the country's leading experts on the impact of cancer on the family.

Q: You're one of the few researchers solely dedicated to investigating cancer's effect on the family. How did you get started in this field?

A: I've been involved in this area of cancer care for 20 years, working primarily with adults. I am educated as a nurse researcher, but my personal experience also informs my work: I am married to a cancer survivor, so I've been a cancer caregiver.

My early research focused on the patient -- looking at the psychosocial impact of the diagnosis. But when interviewing breast cancer survivors, they frequently volunteered comments about their caregivers. Statements like "I'm doing ok, but my husband is struggling" were common, leading me to concentrate on caregiver issues, first in breast cancer, and now in other cancer types including colon, prostate and lung.

Q: With so much emphasis understandably placed on the needs of cancer patients, what do we need to know about caring for the caregiver?

A: The most important thing to realize is that cancer is a family disease. It affects the entire family, not just the patient. Even though caregivers don't have cancer in their bodies, they suffer with the emotional, social and spiritual aspects of the disease. They must face their own challenges in addition to what the patient is facing. This observation seems somewhat obvious, yet common approaches to cancer care regularly exclude the caregiver.

Q: What are the most common challenges faced by the primary caregiver?

A: Our research indicates that it is not unusual for family members to experience as much emotional distress as the patient. How the caregiver manages his or her own emotions affects the patient. There's a reciprocal effect -- what impacts one impacts the other.

Two feelings, uncertainty and worry, are at times more problematic for family members than for patients. One possible explanation for this is that the caregiver has less direct contact with health professionals, often relying on second-hand information shared with them by the patient. Without the opportunity to have their questions answered, they tend to worry more about issues like recurrence.

Caregivers commonly express feelings of powerlessness as well. They may be confident in their health care team, but unsure about the role they should play, and overwhelmed with their new responsibilities.

Laurel Northouse, PhD, RN, FAAN
Laurel Northouse, PhD, RN, FAAN
Professor of Nursing, Co-Director of Socio-Behavioral Research Program

Q: Do caregivers experience physical consequences as well as emotional setbacks?

A: We have observed that, in general, the physical health of caregivers is good compared with the general population. But physical effects do tend to show up when dealing with advanced cancer. In family members of patients with advanced disease, exhaustion and lack of sleep appear.

Q: What differences do you find between younger and older caregivers, and between men and women?

A: Younger spouses and partners facing cancer tend to have more demands on their time. The demands of work can leave them with less flexibility to attend appointments and tax much-needed energy. The responsibility of raising children is another major factor facing younger caregivers. We frequently hear that, in addition to having enough time to spend with children during treatment and worrying about the future, parents also have difficulty talking to their kids about cancer -- knowing what to say and how much to say.

Among older caregivers, one of the key issues is managing multiple health problems in addition to cancer. Older caregivers and patients are more likely to have other chronic illnesses which can hinder their ability to adapt to a new diagnosis of cancer.

One other interesting difference between these age groups is that when cancer strikes a younger couple, they may feel out of sync with their peers, who are living "normal" healthy lives as they deal with a major disease. Their cancer experience is often their first encounter with a significant life challenge, and they are forced to face existential issues like loss and death earlier than their peers. Contrast that with older couples, whose peers are dealing with the myriad of chronic conditions that come with advancing age.

Comparing men and women facing cancer, we've also observed some significant differences. Not surprisingly, men and women cope differently. Men tend to want to confront an issue quickly and put it behind them -- which isn't always possible with cancer. Women tend to see the benefit of more "processing" -- working through issues and emotions through communication. For women, this is not seen as dwelling on the negative, but looking for empathy and support. In general, men feel it's less useful to talk about it, even if it helps the woman, although this isn't always the case.

These differences in age and gender show up whether the individual is in the role of patient or caregiver -- again, reinforcing the reciprocity of the patient/caregiver dynamic. The trick is for couples to resolve discrepancies in communication needs and find a happy medium.

Q: What strategies have you found helpful for the caregiver dealing with the emotional aspects of cancer?

A: Here are my top suggestions:
Get information. Make sure you're involved in appointments with the health care team and try and have your own questions answered. Caregivers should expect to be included without the fear of being a bother. Couples may feel the purpose of this is to provide "a second set of ears" to take in complex information, but it's more than that. The caregiver will feel better if they hear directly from the professionals. So even if the patient thinks he or she can "handle" the appointment alone, I encourage the caregiver to participate fully to lessen their own distress and uncertainty.

Other sources of disease information such as the internet can be helpful, too, but it's important to access only the most reliable information. Our own Patient Education Resource Center and website are great places to start.

Simplify. It's especially difficult to deal with cancer when life is chock-full of other demands; our coping mechanisms can only stretch so far. Of course, many of life's roles can't be abandoned, but when possible, cut back or delegate lesser responsibilities and set limits.

Be hopeful. For the caregiver as for the patient, a spirit of hope and optimism is key.

Be choosy. When looking for support or hope from others, remember that not everyone has empathy skills. Identify the people who can provide real support without criticism or negativity. Surround yourself with people who can bolster your confidence.

Take care of yourself. Don't neglect your own needs. For caregivers, this can be the hardest thing. Many times, the first thing to go is a regular self-care routine: exercise, hobbies, the things we need to do for our own emotional health. Some caregivers feel guilty if they invest time in themselves, instead of focusing solely on the patient. But that's what we all need -- time to re-energize and recharge. To avoid common problems like irritability and waning concentration, restoring yourself is vital.

Caregivers need to know that professionals at the Cancer Center are there to provide support for them as well as for patients. I urge family members to tap into the resources of our PsychOncology clinic, our cancer social workers and our Complementary Therapies program to take care of their needs. Again, it may seem like devoting time to yourself will take away from the patient, but the opposite is true: when the caregiver finds a way to legitimize and process the feelings they are experiencing, they become a far more effective partner for the patient. Our research confirms that.

Q: Speaking of research -- what can you share with us about your current research?

A: We've moved beyond describing and understanding the problem to testing interventions -- looking for the best tools to use to care for the caregiver. Interventions tested with breast cancer caregivers produced positive results, and we're hoping to replicate those findings in other cancer types. Since every family is different, we're also looking for ways to determine, early after diagnosis, which families need which services.

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