GENETIC ALLIANCE • EMPLOYMENT & TRANSITION ANNUAL ISSUE • BY SARAH ROTH
CAREGIVERS WHOSE KIDS ARE TRANSITIONING INTO ADULTHOOD EXPRESS HIGH LEVELS OF STRESS.
ONE EFFECTIVE TOOL FOR REDUCING STRESS IS THE CULTIVATION OF A MINDFULNESS PRACTICE.
Guiding your young adult from pediatric to adult care is no simple task. The healthcare system is fragmented and difficult to navigate. Care is enmeshed in the world beyond the clinic or hospital. And resources for ongoing social support and wellness are, across the country, scarce. Caregivers whose kids are transitioning into adulthood express high levels of stress. Over time, stress and fatigue from the rigors of providing care can increase your chances of developing illnesses such as depression, anxiety, and chronic inflammation.
“Caregivers exclude themselves from the equation of what it means to take care of someone,” writes the Visiting Nurse Service of New York. “So as a caregiver, bringing yourself back into the equation of care is very important.”
One effective tool for reducing stress is the cultivation of a mindfulness practice. Mindfulness is about being present in the moment and accepting it—and your thoughts, sensations, and emotions—without judgment.
Our bodies are designed to process and respond to bursts of stress. Evolutionarily, it makes sense. When our cave-dwelling ancestors were confronted by a saber-toothed tiger, they knew what to do. But providing care, especially through difficult chapters, can mean developing stress patterns that differ from a onetime rush of adrenaline. Stress can become a chronic condition. We struggle to sleep fully and well; we use caffeine to function; we soothe ourselves with junk food, media, or medication.
Jon Kabat-Zinn, Professor of Medicine Emeritus at the University of Massachusetts, has developed Mindfulness-Based Stress Reduction (MBSR) curricula at the Center for Mindfulness in Medicine, Health Care and Society. In an MBSR course, participants learn specific meditation practices, like cultivating awareness of one’s breath, moving through body scans, and contemplating metta, loving-kindness.
“The easiest way to do it,” says Joan Griffiths Vega, an MBSR practitioner and instructor based in New York, “is to reconnect with the breath and come into the body.” Griffiths Vega teaches a mindfulness stress-reduction workshop at Mt. Sinai Hospital.
“Mindfulness works to inhibit the stress response,” Griffiths Vega says. “Most of us run around listening to our thoughts, and this is particularly true of caregivers, who are driven by the to-do list. They are never at rest.”
Participants report that practicing MBSR enables them to:
• Understand why they feel the way they do,
• Gain a sense of control over their emotions,
• Train their mind to think & respond more positively, and
• Relate more easily with anxiety brought about by current life events.
BREATHE IN THE FUTURE, BREATHE OUT THE PAST : RESOURCES FOR CONQUERING STRESS
The following resources are available to help you to breathe through the obstacles and stressors of transition.
PLANNING FOR ADULT HEALTH CARE
Teaching your youth to be responsible for their health care is a journey that begins in childhood. As they develop and grow into the role of an adult, ongoing encouragement and assistance is needed from their parents, caregivers and network of family and friends as they take charge of their health. “Planning for Adult Health Care: A Guide for Parents and Caregivers Transitioning Youth with and without Disabilities from Pediatric to Adult Care” describes some steps you can take to prepare your youth with managing their health needs and transitioning to an adult health care provider.
MindBodyGreen is a website devoted to writing about holistic wellness. Featured articles are curated to provide guidance on mental, physical, and spiritual health. On the website, you can read about these topics, access an archive of video classes, and connect with other parents or caregivers interested in mindfulness based stress reduction techniques. If you’re interested in contributing a personal essay to MindBodyGreen, contact: firstname.lastname@example.org
BATTLING THE PHYSICAL SYMPTOMS OF STRESS
In addition to articles about meditation and mindfulness, the website for Mindful magazine provides videos of guided meditations and forums for discussing questions. In “Battling the Physical Symptoms of Stress,” Parneet Pal, Chief Science Officer at Wisdom Labs, Inc. gives several helpful tips for keeping calm to combat stress.
In 2014, a team of researchers at University of California, Los Angeles, investigated the impact of an MBSR course on people who care for children with developmental disabilities. Parents and caregivers attended a weekly two-hour class, over a period of eight weeks, and one four-hour retreat. The results are published in The Journal of Child and Family Studies. Caregivers expressed higher levels of mindfulness, well-being, self-compassion, and perception of their physical health. Perceived levels of stress— and stress related to their role as caregivers—decreased significantly.
The community played an active role in designing the program’s curriculum. “By focusing on the fact that families and communities are producers of health and health care,” write the researchers, “not just clients or consumers, it empowers families and communities to co-create health interventions.”
Whether you are interested in developing a daily practice, participating in a Mindfulness-Based Stress Reduction Course, or taking a moment to S.T.O.P., consider mindfulness as a tool to reduce the stress that can overwhelm. You may find a community of peers, facing similar challenges, along the way. •
STOP IT : A MOMENT OF MINDFUL EXERCISE
When you next find yourself in a stressful moment of transition, the Visiting Nurse Service of New York provides the following exercise.
Stop what you are doing for a moment.
Take a breath, concentrate on the flow of breath in and out.
Observe your thoughts, feelings, and physical state. Notice your thoughts and let them be (or pass). Name your emotions. Notice your body and its posture. Are you hungry or thirsty? Do you have any aches or pains? Proceed with something that would be helpful to you, whether that is finding a friend to talk to, eating a nutritious snack or meal, or stretching to relieve body tension.
ABOUT THE AUTHOR:
Sarah Roth is Program Coordinator for Care Insight. She is learning to meditate. She received her MFA from the University of Notre Dame and her BA from Washington University in St. Louis. Sarah can be found @selizabethroth
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