Cancer Treatment Centers of America

Caregiving: An ageless role

Author: Bridget McCrea

Julie Buckley knows how good she feels when she’s at her ideal weight. Standing 5 feet 6 inches tall, the 48-year-old had dipped below her target weight of 160 pounds in 2007. “I was on a big weight-loss kick,” says Julie, who met her fitness goals in November, just as her husband, Patrick, was diagnosed with esophageal cancer. Julie was thankful that she was in fighting shape and ready to help Patrick face the cancer head-on. She also knew she would no longer have hours to spare for exercise or the focus to monitor her own diet.

“We were doing six- to eight-week stays at the treatment center for Patrick’s radiation and chemo,” recalls Julie, who left her job as a coach-trainer to care full-time for her husband. “I started steadily putting on weight because I wanted to take care of him and didn’t worry much about myself. I ate whatever was there and did what I could to get us through the situation.” Over the next five years, Julie’s weight fluctuated between 160 and 210 pounds. Deciding to break out of the yoyo cycle, about 18 months ago she took a class through a Christian counselor association to become a certified health and wellness coach.

“I started seeing clients weekly and realized it felt good to help others, to take care of myself, and to lose weight again,” says Julie, who, after Patrick’s esophagectomy in February 2011, also started eating smaller meals throughout the day, just as she was teaching her clients to do. “I’m back to my healthy weight and feeling good. Now I just have to maintain it.” The fact that Julie overlooked her ownfitness and dietary needs while serving as her husband’s caregiver is not surprising to Gerald J. Ellison, PhD, a psychologist at Cancer Treatment Centers of America® in Tulsa, Oklahoma. In fact, he says it’s quite common for both caregiver and patient to be blind to the fact that the former puts aside his or her own needs once the family member or friend is diagnosed.

“Sometimes it’s easier for those outside the patient/caregiver relationship to see that their norms of everyday life have shifted dramatically than it is for the patient and the caregiver to see those changes,” says Dr. Ellison. “A counselor, pastor, or psychologist may be needed to help them deal more effectively with the cascade of changes that comes with cancer or other major health concerns. Those changes can occur very quickly and without warning, making it even more difficult for those involved to see clearly what is happening to them, especially at first.”

The individual caregiver’s age and stage of life also play a role in his or her ability to strike a balance between the caregiver’s own needs and those of the patient. Younger caregivers in their teens and twenties may be inexperienced at providing such care, whereas those in their thirties and forties are likely busy with their own careers and families. And taking care of someone can place a major strain on caregivers in their fifties or sixties who are dealing with their own health and wellness issues. Understanding some of the unique challenges confronted by caregivers of various ages can help both the caregivers and those who support them approach the situation with appropriate resources.

Young caregivers

There can be difficult and potentially far-reaching consequences for a young adult who takes on a caregiving role, particularly if it involves a long-term commitment. “Educational and vocational pursuits may be interrupted or sidelined altogether,” says Dr. Ellison. “Sometimes dating and other social activities, even marriage or starting a family, may get postponed due to caregiving responsibilities.”

And while the young caregiver may be glad to “sacrifice for Mom or Dad,” Dr. Ellison says putting life on hold for a patient can stir up resentment in the caregiver who is in the midst of finding his or her own personal identity, career, and life path. “If negative dynamics exist between the patient and the caregiver,” says Dr. Ellison, “the caregiving activities may suffer and the relationship could be burdened with the negative emotions that may exist on both sides.”

Mistie Bickford, 27, a special needs aid at a junior high school, took on the role of caregiver in October 2011 when her 47-year-old mother, Kim was diagnosed with pancreatic cancer. Mistie says keeping things in perspective, taking challenges in stride, and acknowledging the fact that “a lot of people in my family have had cancer” have helped her balance her mom’s needs with her own. Mistie’s caregiving role finds her regularly flying with her mom from their Maine home to Philadelphia for treatments, paying rent, helping out with the monthly bills, and participating in fun activities like going to the beach with her mom.

Mistie, who was recently accepted into a program to earn her teaching certificate, says she just started exercising again to help stave off stress and stay in shape. “My mom is trying to get back into exercising again, too, so we do it together and support each other,” says Mistie, who enjoys every minute she spends with her mom—whether it’s at the doctor’s office or during lawn-saling outings. “We always try to do something fun, even when things get stressful.”

The balancing act

Caregivers in their thirties and forties have pretty full plates. Most are already established in jobs—or working toward that goal—and in relationships with partners, spouses, or children. Good diet, exercise, wellness, and even adequate sleep take a backseat when these individuals are thrown into caregiver roles. “During our adulthood, most of us develop relationships, raise families, become homeowners, and grow our careers—responsibilities that all take up a lot of our time,” says Christina Ables, oncology certified nurse and outpatient care manager for CTCA in Zion, Illinois. “Things can get complicated fast when someone in the family gets cancer and you are called on to help manage their care and needs.”

The good news is that there are steps that caregivers can take to get through these challenges. Simply establishing a schedule (on a paper calendar or on your computer or smartphone) can help with organization. List all personal, family, and work obligations, says Ables, and be sure to schedule some time for yourself. Whether you enjoy yoga, shopping, meditation, or reading, carve out the time to do those activities.

Making the distinction between your children and older loved ones can also go a long way in helping to achieve that balance, says Ables, who advises caregivers against treating their parents as if they were children. “If you’re caring for a parent, he or she can most likely do some things independently,” she says. “Just because you’re in a caregiving role doesn’t change that fact. Your children need parenting while your parents may need only guidance and support. Being a caregiver doesn’t mean you have to take over everything for your loved one. Work together to understand what your loved one needs help with and what they can do on their own. This can help keep your caregiving responsibilities manageable as well as help the patient feel respected and remain involved in their own care.”

Older caregivers

Going to your own doctor’s appointments, getting the right nutrition, and making time for de-stressing activities are all very important issues that caregivers who are in their fifties, sixties, and beyond must consider before taking care of another person. Older caregivers sometimes find themselves in this role as a spouse or significant other. Wanting and needing to “be there” for a partner can take a toll on any caregiver but particularly those who are older.

“I’ve seen people just put aside all of their own self-care needs in order to take care of their spouse or significant other— to the point where the caregiver becomes ill, and then both need caregivers,” Ables says. “As a caregiver it is essential to take care of yourself and understand that your health is as important as that of the person for whom you are providing care. Much like airline attendants advise adults to put on their own oxygen masks before helping their children, caregivers who don’t put themselves first in the equation can quickly find themselves, well, running out of air.”

Ables says that sticking to a routine, particularly one that allows for healthy meals and adequate sleep and rest; letting other family members or friends share in the caregiving; and utilizing community and professional medical services (like home health and respite care)—all can help older caregivers achieve balance.

Another simple way to keep stress at bay is by keeping food, medication, and pain diaries. “Trying to remember the facts can be a little more difficult for the older caregiver, especially if they are under stress,” Ables says. “These diaries help caregivers keep accurate records without having to memorize information. Not only do these diaries help you keep track of what’s going on but they also are great sources of data for your medical team, allowing them to identify and treat problems and helping make the most out of doctor visits.”

Making lemonade out of lemons

Julie, who has adult children and grandchildren, says she’ll never regret leaving her job or putting her fitness on the back burner to spend all of her time taking care of the love of her life, Patrick. Julie has relied on her strong faith in God to give her strength each day throughout her journey, and she has learned important self-care strategies—aiming for six to eight hours of sleep each night and making time for herself, by going for walks or golfing with friends at the local course. And, she says, help from friends and neighbors has been invaluable, even if it’s just bringing in the mail or taking the garbage cans out to the curb. “I have learned how to humble myself and ask for help when I really need it,” says Julie, “and to rest when Patrick is resting. We are so blessed to have each day together.”

Dr. Ellison points out that caregiving is not all negative and that relationships deepen and lives are enriched during the experience. “All involved can learn from such relationships—how to love more deeply, how to forgive others, and how to enlarge one’s circle of life in healthy ways,” he says. “We indeed can help each other make lemonade out of the lemons that life brings our way.”