Family-tested solutions
for Special Needs

Toddler and mother playing together

Family-tested solutions
for Special Needs

Toddler and mother playing together

Caregiver Burnout: Five Great Resources for Support

In a previous blog (“Imperfectly OK Parenting”), I wrote about my own experience with caregiver burnout.  Question: Do you know a special needs family that has not struggled with this problem?  I don’t.  Our children need so much and the path forward can be so bewildering.  In the meeting the needs of our children, we too easily we lose sight of our own.

What is Caregiver Burnout?

The Cleveland Clinic defines caregiver burnout as “a state of physical, emotional and mental exhaustion.” Simply put, caregiver burnout is the result of giving more than we can, longer than we should. “I felt like I was my child’s second skin, always trying to explain him to the world and keep the world from being too harsh,” a mother told me once. “After a while, I didn’t know how to stop.”

Nurturing Stability

Many parents of children with difficult behaviors feel pressured to appear calm and collected as a way of minimizing blame from others. However,  some of the most effective parents I know make a genuine effort to stop worrying about appearances.  Personally, I can still get in a funk over the snide look somebody gave my child in the supermarket–but I’m working on it. Yes, people do judge us for the behavior of our children, and that hurts.  On the other hand, emotional stability is a precious resource to be actively nourished and protected for the long haul of parenting.   Stable on the inside is better than calm on the outside.

Learn More About Caregiver Burnout

Untreated caregiver burnout can lead to mental and physical harm to the caregiver as well as the person with a disability.  If you or someone you know is at risk, get help.

  • Friendship Circle is a Michigan program that pairs volunteers and children with disabilities. Its blog recently posted an excellent short article on “Essential Tips for Preventing Caregiver Burnout.”  The signs of burnout they describe are similar to the symptoms of PTSD:
    • Fatigue
    • Irritability
    • Feeling numb or developing an uncaring, negative attitude
    • Heightened sensitivity
    • Social withdrawal
    • Loss of interest in favorite activities
    • Frequent illness and/or chronic pain
    • Thoughts of self-harm or harming the person with a disability
    • Difficulty concentrating
    • Changes in sleep patterns
    • Changes in appetite and/or weight
    • Feelings of hopelessness and/or helplessness
    • Reliving upsetting memories
    • Inappropriate use of alcohol and/or medication
  • Sleep deprivation is a big source of burnout for special needs parents.  (My son didn’t sleep through the night until he was five.)   I related to a recent article about “Why Special Needs Moms are Exhausted All the Time, But Will Never Ask for Help” on Life Over C’s. It is which is written by a homeschooling mom who is stationed overseas (hence the name).  Her site also provides a ton of free downloadable activities for homeschoolers.

Tips and Resources for Self-Care

  • The website of NAMI (National Alliance on Mental Illness) has a deep bench of information about mental wellness, including this page on Caregiver Self Care.
  • I’m intrigued by Care.com, a nationwide matching service that can help you find local respite givers including those with experience in special needs care. References and background checks are available.  I haven’t tried it yet. If you do–please get in touch!
  • When a friend had breast cancer she set up a CaringBridge page, a personal journal that keeps friends and supporters informed.  The site offers excellent resources including “Ten Soul-Healing Tips to Avoid Caregiver Burnout.”

Be well, take care, reach out.

–Wendy

 

Wendy Besmann

Wendy Besmann is the Executive Director of Get There Project. Her books include Family Road Map: A Step-By-Step Guide to Navigating Health, Education, and Insurance Systems for Families with Special Needs, Young Adult Road Map: A Step-By-Step Guide to Wellness, Independent Living, and Transition Services for People in Their Teens and Twenties, and Team Up for Your Child, A Step-By-Step Guide to Working Smarter with Doctors, Schools, Insurers, and Agencies. She and her husband Ted have two sons, Elliot and David, who live with special needs. Wendy and Ted split their time between Knoxville, Tennessee and the University of South Carolina campus, where Ted is an engineering professor and Wendy is a "vintage" grad student in Public Health.

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