Caregiving Stressors

Picasso’s Weeping Woman (1937)

“The Quiet Rage of Caregivers,” by New York Times reporter Catherine Pearson (for the Well section), outlines perennial stressors that caretakers face in their care of someone who is ill physically and/or mentally. “Around 53 million Americans are caregivers for a family member or friend with a health issue or disability…nearly a third (31.3%) spend 20 or more hours per week in that role.”  

Consider a woman who has a sister with ALS and parents in their 90’s who live two states away. The sister had been the parental caretaker, but now she needs caretaking herself. Juggling a job with caretaking visits to three ailing family members at a distance takes a toll. “Caregiver Stress Syndrome” is a relatively new label for what once was termed “burnout” or physical, mental, and emotional exhaustion. The blurring of roles (caregiver vs. daughter or sister) can make caregiving an uncharted territory. Conflicting expectations and unrealistic demands can further impact one’s wellbeing.

Who takes care of the caregivers? According to the CDC (Centers for Disease Control and Prevention), over half of caregivers provide their caring for 2 years or more. However, 53% of caregivers report that their own health decline compromises their caretaking ability with 36% reporting insufficient sleep. One in four (25.4%) females are caregivers; one in five (18.9%) males are caregivers. Besides chronic health issues, U.S. caregivers may report symptoms of anxiety and/or depression, as well as secondary financial burdens.

Dedicated caretakers often do not give voice to their own neglected needs and feelings. Underneath “burnout” frazzled emotion lurks sad and grieving parts of their personalities.      

Gerontological nurse Allison Lindauer, associate professor of neurology with Oregon Health & Science University School of Medicine, conducts research and cares for individuals with dementia as well as their caregivers. She does not candy-coat the stress involved in caretaking: “There’s this myth of the loving caregiver.” Dr. Lindauer recognizes that anger and frustration often accompany long-term caregiving; actually, opposite and raw emotions are the norm.

With an aging U.S. population on the rise, more caregivers are needed. The Mayo Clinic offers “Tips to Manage Caregiver Stress:”

  • Ask for and accept help…Make a list of ways in which others can help you.
  • Focus on what you can do…No one is a perfect caregiver. Believe that you’re doing the best you can.
  • Set goals you can reach…Follow a daily routine. Say no to requests that are draining.
  • Get connected…Learn about caregiving resources in your area…such as rides, meal delivery.
  • Join a support group…[it] can be a place to make new friends.
  • Seek social support…Make time each week to visit with someone, even if it’s just a walk or a quick cup of coffee.
  • Take care of your health…Find ways to sleep better…Eat a healthy diet.
  • See a health care professional…Talk about worries or symptoms you have.

Speak up. Share your caregiving story with others.

Pearls of Peace (PoP) Quiz

243. Have you experienced Caregiver Stress Syndrome?

244. What is most helpful for your wellbeing at any time?  

Janis Johnston's avatar

By Janis Johnston

Janis Clark Johnston, Ed.D., has a doctorate in counseling psychology from Boston University. She has worked with children, families, and groups (ages 3-83) with presenting issues of anxiety, depression, trauma, loss, and relationship concerns. She initially worked as a school psychologist in public schools and was awarded School Psychology Practitioner of the Year for Region 1 in Illinois for her innovative work. She was a supervising psychologist at a mental health center, an employee-assistance therapist and a trainer for agencies prior to having a family therapy private practice. Recipient of the 2011 Founder’s Award for her dedication to the parenting education of Parenthesis Family Center (now called New Moms), and the 2002 Community Spirit Award from Sarah’s Inn, a domestic violence shelter and education center, Johnston is an active participant in numerous volunteer activities supporting children and families in her community. A frequent presenter at national psychology and educational conferences, Johnston has published journal articles, book chapters, and two books -- It Takes a Child to Raise a Parent: Stories of Evolving Child and Parent Development (2013, hardback; 2019, paperback) and Midlife Maze: A Map to Recovery and Rediscovery after Loss (2017, hardback; 2019, paperback). In addition to augmenting and supporting personal growth in families, Johnston is a Master Gardener and loves nurturing growth in the plants in her yard.

2 comments

  1. Very interesting post. I live far away from my parents and I always wonder how I will manage if they would need care at an older age. I am stressed out because of this, even though my sister lives close to them, I wouldn’t like to let her bear all the burden. There’s nothing I can do now, also because my parents thanks God are still autonomous with their daily life.

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