CJ is a 5-year-old medically fragile child with many physical and developmental disabilities due to injuries suffered during her complicated birth. Her mom, Andrea, a single-parent, has been caring for her needs around the clock for the past five years and she is overwhelmed with the demands CJ's care places on her. Family members offer support and respite from time to time, but due to CJ's need for frequent tracheal suctioning and other complex care, family members and friends are limited in their ability to help.
CJ is going to start kindergarten next year, and although her Mom is happy about this milestone, she is also very anxious about the transition. She has concerns about how to coordinate CJ's care and also ensure she receives the educational supports and other entitlements she deserves and needs to be successful in school. Right now, Andrea is feeling anxious, depressed, and exhausted as she struggles day to day to meet CJ's around-the-clock care requirements. There are days she feels she can't go on and doesn't know where to turn or what to do.
Andrea's struggle is not at all uncommon. According to the National Alliance for Caregiving, more than 65 million people, about 29 percent of the U.S. population, provide care for a special needs, chronically ill, disabled or aged family member or friend during any given year. Family caregivers responsible for a child under age 18 with special needs account for 14 percent of the U.S. population, or an estimated 16.8 million people. More than half of these caregivers are caring for their own children, often with limited supports in place, according to the Alliance.
Caregiver stress is real and can affect the caregiver's health and emotional well-being. Statistics show that being a caregiver compromises the caregiver's immune system and can raise the chances that the caregiver will develop a chronic illness of his or her own. Caregivers also are more prone to depression.
Caregiver stress is defined as the emotional and physical strain of caregiving (Womenshealth.gov). Some signs of caregiver stress include: denial, anger, social withdrawal, health problems, lack of concentration, irritability, sleeplessness, exhaustion, anxiety, and depression.
The National Family Caregivers Association (NFCA) is an organization dedicated to educating, supporting, empowering and giving a voice to the more than 65 million Americans who care for loved ones with a chronic illness or disability or the frailties of old age. The message they want caregivers to receive is: Believe in Yourself. Protect Your Health. Reach Out for Help. Speak Up for Your Rights.
Believe in Yourself: NFCA stresses the importance of trying to maintain a positive attitude by recognizing your strengths and limitations. Believing in yourself and recognizing your strengths and limitations will go a long way in your ability to set goals and boundaries for yourself and for your loved one.
Protect Your Health: It is critically important to maintain your physical and emotional health and well being -- if you don't, who will? Your good health is the greatest gift you can give your loved one and your entire family.
Reach Out For Help: Reaching out and asking for help is never a sign of weakness; rather, it demonstrates strength and a keen awareness of your own abilities and sense of self.
Speak up for your Rights: NFCA encourages and stresses the importance of arming yourself with vital information regarding your loved one's diagnosis and treatment options. Having the proper information is the gold standard in achieving the ability to advocate for your loved one and developing strong self-advocacy skills. By keeping the goal of receiving quality health care and making it a priority, you can avoid future medical problems and create a superior quality of life for all involved.
Karen Osborne, RN, MSN, is a registered nurse and the Director of Business Development and Operations for Advocacy Partners, which provides health care advocacy and care management to children and adults with special needs and their caregivers. Visit www.trustadvocacypartners.com to learn more.
Article Last Modified: 01/11/2011
© 2016 ElderLawNet, Inc.
© 2016 ElderLawNet, Inc.