Only when we first help ourselves can we effectively help others. Caring for yourself is one of the most important—and one of the most often forgotten—things you can do as a caregiver. When your needs are taken care of, the person you care for will benefit, too. November is recognized as National Family Caregiver Month. Below, our family support team shares information on risks associated with not taking proper care of yourself and some suggestions for making self-care your priority.
If you are a baby boomer who has assumed a caregiver role for your parents while simultaneously juggling work and caring for your child diagnosed with PWS, you face an increased risk for depression, chronic illness, and a possible decline in quality of life.
But despite these risks, family caregivers of any age are less likely than non-caregivers to practice preventive healthcare and self-care behavior. Regardless of age, sex, and race and ethnicity, caregivers report problems attending to their own health and well-being while managing caregiving responsibilities. They report:
- Sleep deprivation
- Poor eating habits
- Increased anxiety
- Failure to exercise
- Failure to stay in bed when ill
- Postponement of or failure to make medical appointments for themselves
If the PWS diagnosis is still new to your family, take some time and space to process your emotions; you’re entitled to them. It’s okay to be angry, sad, confused, overwhelmed and to grieve; just don’t stay there. Accept your child’s diagnosis and then focus your emotions on how strong, unique and amazing your child is. The extra attention and parenting fuel needed to raise a child with PWS means self-care must be your #1 priority.
Self-care can look different for every parent, sibling and caregiver. What’s important is that you find what works for you. Below are some suggestions for self-care.
Me Time
We all know that taking time for yourself is the number one recommended self-care tip, and every caregiver knows just how difficult that is. Studies show that as little as 15 minutes a day will improve your affect. It doesn’t matter how you spend those 15 minutes if it is meaningful to you. Take a bath, have a cup of coffee alone before anyone else wakes up, a glass of wine after everyone goes to bed - you get the idea.
Move Your Body
Exercise provides a natural endorphin rush and stress release. Finding time to exercise may be challenging, especially with all the gyms and schools closed. Consider changing your mindset from “finding time” to “making time." Exercise is important for everyone, including your loved one with PWS; make it a family activity - ride bikes together, play tag in the backyard, go for a walk or run. If exercise isn’t your thing, just moving your body will help - roller-skate, swim, dance, the options are endless. These activities will improve your mood and increase your energy.
Do What You Love
What are the things you enjoy most? What were your passions before you had children? Make a list of the things that bring you joy then schedule time to participate in them - weekly or monthly.
Find Your Tribe
We cannot emphasize enough just how important a support system is for caregivers. Find those people who support you, love you and understand you. Your tribe will be those people who you can cry with, laugh with, and will pick you up off the floor when you need it. They may be other caregivers who truly can relate to PWS specific stresses. Facebook has many groups that provide online support to parents of individuals diagnosed with PWS and/or other syndromes. Many state chapters offer support systems and family activities that will give you the opportunity to meet other families and develop relationships.
Proper Nutrition
Eating healthy, nutritious foods are essential for not only your children but for you as well. If you go long periods of time without eating during your waking hours (i.e. greater than 5-6 hours), the body does not function at its best. We may not be able to think clearly as our brain is starved of glucose (aka, carbohydrate). We may also experience fatigue, low energy levels, or headaches. If we are planning to exercise or our day involves a lot of movement, we may not have the best energy levels to get through it. Food is what gives your cells the energy they need accomplish their tasks. Include a balance of carbohydrates, proteins, and fats throughout the day to help nourish your cells with what they need to help you perform. Having a balance of these three nutrients is what we call the “energy trifecta” – it helps keep blood sugar levels more stable and helps you feel more energized throughout the day.
Meditation
Meditation and reflection looks different for everyone, and for some people, it's just not what they need. And that's OK! There are lots of different apps available for your smart phone that will guide you through the process. You might need to try a few until you find what works for you. As a parent, you are constantly working to help your child, you might feel selfish when you slow down to focus on yourself. Taking time every day to channel your inner peace and refill your cup, will give you the energy to enjoy the rest of your day with the utmost happiness and supportiveness for others. Only by having your own mental clarity, free of self-stress and self-inflicted worries, will you be able to show up to the rest of your life the way you want to.
As they say on airplanes, put your oxygen mask first. Amid the chaos and uncertainty, make yourself a priority. You are worth it.
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Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Perry A. Zirkel has written more than 1,500 publications on various aspects of school law, with an emphasis on legal issues in special education. He writes a regular column for NAESP’s Principal magazine and NASP’s Communiqué newsletter, and he did so previously for Phi Delta Kappan and Teaching Exceptional Children.
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Children’s Institute of Pittsburgh. She graduated from Duquesne University receiving her Bachelor’s and Master’s degree in Education with a focus on elementary education, special education, and language arts.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Program (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Children’s Hospital in Denver supporting families and school districts around the United States with their child’s Individual Educational Plan.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.