Caregivers: The Great Nurturers
Friends and family give the best of themselves
by Stacy Baca
Some people come to caregiving with an innate sense of exactly what needs to be done. Some come with the best intentions, hoping to learn along the way. Some caregivers sit at the bedside into the long hours of every night; others drop everything the very second they are called to jump the next airplane. Many unheralded caregivers are the ones who simply pick up the phone on a Wednesday night.
Caregivers give the best of themselves despite full lives of responsibilities, schedules, and often conflicting roles. Still, most manage to teach, strengthen, and touch us in ways that are difficult to quantify. And, as they stand with us through our journeys, we learn the true person caregivers are, the person they have become, the person they have been given the opportunity to reveal: their nurturing and courageous selves.
Though there are some commonalities along the caregiving journey, caregivers, themselves, are a heterogeneous group of individuals. They may be a sister or son, husband or friend, distant cousin or brother. They come from all different backgrounds, have myriad experiences, and express infinitely diverse personality styles. Most rise to the unexpected occasion of caring for a loved one with breast cancer and meet the challenge in as many different ways as there are different people. So who are they, at their core? How do they do what they do? And what are the threads that stitch them together?
Nurturers. Born or Made?
There exists a natural caregiving personality type, according to The Myers-Briggs Type Indicator (MBTI). The MBTI is a “personality inventory whose purpose is to make the theory of psychological types described by psychologist, C.G. Jung, understandable and useful in people’s lives” (The Myers-Briggs Foundation, myersbriggs.org,). The MBTI describes the caregiving personality as one who is:
- Extroverted (E): Prefers to focus on the world outside themselves, as opposed to their own inner world;
- Sensing (S): Prefers to focus on basic information they take in, as opposed to interpreting and adding meaning;
- Feeling (F): Makes decisions based on first looking at people and special circumstances, as opposed to first looking at logic and consistency;
- Judging (J): Prefers to make decisions when dealing with the outside world, as opposed to staying open to information and options.
The individual who fits this typical caregiving profile (ESFJ) is characterized by, among other things, “attending to the needs of others… displaying conscientious and orderly behaviors…and being devoted to the traditional values of home.” ESFJs typically exude warmth and energy. Often, ESFJs read other people and adjust their behavior to please. They take their responsibilities seriously and their actions are guided strongly by a personal value system. (Read more at typelogic.com/esfj.html.)
A tall order! It is easy to see why people in this personality group could come naturally to the caregiving role. Yet, it is safe to say that not all caregivers fit the exact profile and, despite this, still experience caregiving success through deepening their relationships, finding meaning in the situation, and discovering strengths they did not know they possessed. How? Through personal growth and embracing the challenges of the caregiver’s ever-changing world.
Jayne Cunningham, RN, has observed the changes experienced by caregivers during her career as a nurse certified in administering chemotherapy, and in her own personal life, when her dear friend experienced breast cancer recurrence. “You can’t walk with a person [through breast cancer] and not come out different,” says Jayne. “Those who succeed are willing to take that risk, meet that challenge.”
As the care-recipient’s health changes, so do their needs. Their requests can be as simple as a glass of ice-cold water or as complex as needing reassurance that they still possess their own inner power. At one point, the desire can be for a quiet presence; at another, a little levity. Through this, the caregiver is there for many of the turns, transforming themselves right along with the situation.
Alexandra Boos recalls a time when she and her family filled a small hospital room while her mom, diagnosed with Stage IV breast cancer, underwent chemotherapy treatment. She remembers how they shared family stories. She remembers their laughter filling the hallways. To Alexandra, this moment illustrates how she and her family made the choice to see the blessings in the situation and “resonate with the overall arch of light.” She and her family met the needs of the moment and embraced what it desired of them.
“Caregiving was my opportunity,” says Alexandra, caregiver to her mom and founder of The Luminous Breast Cancer Foundation. “I had to grow, get comfortable with my new identity. My mom had to learn to receive and I had to learn to give. It was easy to want to control every second, but I had to relinquish some of that control and my mom had to do the same. She gave me a chance to experience the giving.” Alexandra’s mom gave her the chance to experience giving love, an act that transformed Alexandra and her life.
Alexandra describes herself as a natural caregiver but believes in the process of personal growth brought on by the caregiving role. Given her own personal journey and the lessons she learned along with her mom, she suggests that anyone can grow into caregiving by:
- Focusing on patience
- Offering to lend your voice as the voice of your loved one
- Being flexible
- Looking for emotional and spiritual growth opportunities in the situation
- Doing everything with love.
“Caregiving crystallizes what is important in your life and the love you have for the patient,” Alexandra says. Caregiving rises above the tasks, the appointments and the disease.
Jayne Cunningham agrees that caregiving goes beyond its physical responsibilities. She believes caregiving tasks are most fruitful if guided by what she refers to as “principle-based living.” Living according to personal principles -- whether those principles are oriented around family, spirituality, community or another value -- requires those who are touched by the disease to define, as well as focus their actions on, what is truly important in their lives. When Jayne’s close friend, a nursing colleague, experienced a recurrence, Jayne “felt intensely that I wanted to have more knowledge and wanted to experience the support system of others who had been touched by breast cancer.” She decided to sign up for Walk for the Cure.
What struck Jayne about both the caregivers she met during the walk and the families with whom she had worked was not only their diversity, but that the caregivers were connected by their easy ability to share their own experience. Each individual was able to do this in his or her own way, and each developed this ease over time. “I see people open up more and more along the way. They become secure with themselves, more willing to express and communicate. I see a vibrancy develop, a spirit,” Jayne says. “Being a caregiver leads one to have deeper conversations.”
This refocusing on principles and learning to share experiences is invaluable in the caregiving experience. It can help support the caregiver, herself, a critical component of providing good care. Jayne explains that caregivers can grow and better support themselves and their loved ones by learning to:
- Stay in the present moment
- Seek support
- Be self-aware of one’s attitude and actions
- Take proactive steps.
All things for caregivers to keep in mind, but difficult to remember at times of stress and high emotion. It’s true that many challenges await caregivers from the multiple, sometimes mundane tasks, to differing family expectations to caregiver guilt. And it seems that these challenges inter-relate.
In fact, a study funded by the American Cancer Society entitled “Family Caregivers and Guilt in the Context of Cancer Care” (Spillers, Wellisch, Kim, Matthews, and Baker. Psychosomatics 49:511-519, November-December 2008.), gives evidence that “certain care-related stress factors such as: greater impact on schedule, less perceived caregiving competence, poorer overall health of the care-recipient,” were significantly related to caregiver guilt. In other words, if the patient didn’t get well, the caregiver felt responsible. In the study, guilt was defined as “a feeling of responsibility or remorse for falling short of one’s sense of obligation, or expectations.” Certainly, there are many differing sets of expectations that are held of friends and family lending support to a person with breast cancer.
Alexandra Boos remembers differing expectations in her own family, “but only because of the distance,” she says. Alexandra was living in New York City and had a career as a model during her mom’s treatment. Her experience was different from that of her family that lived locally in Michigan who could take on the responsibility of the day-to-day caregiving. “But there was nothing I could do about where I lived,” she said. “I never missed a treatment or surgery. I was fortunate that I could turn down work if something came up with Mom.” Guilt was something that Alexandra could not comprehend because she felt so grateful to have a flexible lifestyle and for the opportunity to give love to her mom.
Elevating the Definition
Perhaps Alexandra’s healthy attitude was brought about by her definition of caregiving, a definition that is not restricted to the outcomes, the challenges and the unpredictability of caregiving. To Alexandra, it was much more than that. To her, “Caregiving is a moving meditation of love.”
Her job was to love her mom, treat her normally and bring her back to who she truly was. She didn’t want to treat her mom as fragile. She wanted to hug her. She wanted to communicate with her in every way necessary. She wanted her mom to realize that she was not only a woman with breast cancer, but a woman full of experiences, talents and life. “All the lessons she taught me growing up, she embodied: strength, courage, love and compassion,” says Alexandra. She wanted to show her mom that she had learned from her and learned well.
Power of Giving
It is clear that the journey through caregiving is different for every individual and every family. The role can take on many forms. The choices made differ as much as the individuals involved. But, what is true and at the core of all caregiving is that it has the power to change people, families and communities. No matter who they are. No matter where they belong. Another truth? Our great nurturers are, at their most authentic and powerful, givers of themselves.
The full text of this article appeared in Issue 10 of Amoena Life magazine.
Stacy Baca, OTR/L is a health and wellness writer who has combined her 17 years of experience as an occupational therapist with her talent for writing, to serve various communities and publications.