Imagine the following:
“My whole life has changed in a flash. I now am the head of the household. [I am] the husband, the mother, the caregiver, the wage earner, the fix em’ up handy man, the lawn mower, everything… and the different changes in [my husband’s] totally different personality. How do you deal with that?” (Kuipers et. al. 2014)
If there is one thing we have learned working as occupational therapists at Penn Rehab’s Brain Injury Recovery Center, it’s that brain injuries do not discriminate. They happen to people of all ages, cultures, and backgrounds. From mild to severe, brain injuries can have a significant and lasting impact on the lives of the survivors and the entire family dynamic.
Consider your family roles and routines—who is responsible for the cooking, laundry, shopping, and finances? Who needs to drop the kids off at school? Or help care for other family members? How might this all change if your life was impacted by brain injury? If you have not personally been affected by brain injury, you may know someone who is caring for a loved one who has had one.
Although a lot of the strategies below will apply to caregivers of all kinds; caregivers of brain injury survivors may experience other stressors specific to personality changes, new behaviors, and cognitive changes—in addition to the physical changes that can occur.
What is Caregiver Burnout?
Caregiver Burnout is a state of physical, emotional, and mental exhaustion that may be accompanied by a change in attitude—from positive and caring to negative and unconcerned. Burnout can occur when caregivers do not get the help they need, or if they try to do more than they are able—either physically or financially.
Common Causes of Caregiver Burnout
- High expectations for loved one and yourself may not always be realistic
- Lack of control – many caregivers become frustrated if they don’t have the money, resources and skills to plan, manage, and organize their loved one’s care
- Putting unreasonable demands on yourself – sometimes you take on more than you can handle
- Taking over multiple family roles
Many caregivers also feel guilty if they spend time on themselves rather than on their ill or elderly loved ones. Caregivers who are burned out may experience fatigue, stress, anxiety, and depression.
Common Signs of Caregiver Burnout
- Change in sleep patterns
- Emotional or physical exhaustion
- Feeling blue, irritable, hopeless and helpless
- Withdrawal from friends, family and other loved one
- Changes in appetite, weight or both
- Feelings of depression
It is important for caregivers to remember to take steps to prevent a burning out by continuing to provide themselves with physical and emotional support.
Caregiver Burnout prevention may include:
- Seeking out help – through family, friends, local resources, respite care, join support group
- Staying healthy – you can’t help your loved one if you aren’t healthy and feeling well!
- Identifying positive coping strategies – whether it be visiting with friends, reading, listening to music, exercising.
Online resources can also be helpful in finding local support and other tips for caregiver support, including:
At Penn Rehab, our Brain Injury Recovery Center team is here to provide support for caregivers of people living with brain injury. The Brain Injury Recovery Center Caregiver Support Group is a group designed specifically for caregivers of individuals who have sustained a brain injury. This monthly group provides a forum for caregivers to share experiences, resources, and strategies for coping during this difficult transition from hospital to home and the community. Our therapists are able to help create a support network for caregivers and provide assistance with community resources.
The Brain Injury Recovery Center Caregiver Support Group meets the first Thursday of each month at our Rittenhouse campus from 3-4pm. To learn more about resources available and for more information about the support group, Contact Kjisten Robin, MS, OTR/L, CBIS at 215-893-6425 or via email
About the Bloggers:
Kjisten Robin MS, OTR/L, CBIS is a Lead Therapist at Penn Rehab's Brain Injury Recovery Center. Kjisten works closely with the Brain Injury Recovery Center team to coordinate support groups for patients and caregivers.
Katherine Tuan MS, OTR/L, CBIS received her Occupational Therapy degree from Thomas Jefferson University in 2012. She has three years of experience treating in inpatient rehab and received her Brain Injury Certification in 2015. Kate works closely with the Brain Injury Recovery Center team to coordinate support groups for patients and caregivers.