Brain Injury and Stress: Family Caregivers
June 23, 2009 · Print This Article
By Larry Jameson, Author, Brain Injury Survivor’s Guide
Brain injury affects over one million families each year in the United States alone and is the Number One cause of death and disability in the world. Information available to family members is in even shorter supply than what is available to the brain injury victims.
Stress hits family members at the moment of a phone call. In my case it was, "Larry, you need to come to the hospital; there’s been a Code Blue." Upon hearing words like those, the body’s autonomic resopnse system goes into overdrive by pumping additional adrenaline and a few other chemicals that allow you to jump into action.
This fight or flight response is supposed to be temporary. It allows you to take necessary action and then it subsides as the situation comes under control. When I got off the hospital elevator at the Medical Intensive Care Unit I immediately saw family members sitting in the chaplain’s room. A second fight or flight response piled on top of the first. I was met by a doctor who said, "I don’t expect her to survive the trauma." A third dose of autonomic chemicals flooded my mind, body and soul. Like the flood waters of Hurricane Katrina that devastated New Orleans, there was no opportunity for those chemicals to subside. The situation was not coming under control by any stretch of the imagination.
Beth remained in a coma for two weeks. The early days had a common phrase, "The next 24 hours will tell." Then, "the next 48 hours are crucial." The flood waters could not retreat, and stress began to build an almost impenetrable fortress within. Forget August…fast forward to September. Beth is released from the hospital and her parents bring her to a strange house with strange people living in it. She had forgotten me and our children. She slept on the couch. Actually, she slept a lot – on the couch or in the bed.
One way to reduce stress is to rest and relax. Beth was doing plenty of that. Since her brain injury was due to her lungs failing, I sat in the floor beside her as she slept…watching the rise and fall of her chest. If it didn’t rise when I thought it should, I shook her until her breathing appeared normal. I couldn’t sleep; I had to protect her. At least, that was my thinking at the time. And the stress continued to build. (continued below)
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What an interesting couple we were at the time: a wife with a brain injury and a husband weighed down with stress. Those who have read our book know that we were not told Beth had a brain injury and that 15 months passed before we were able to get her admitted to a neuromedical facility. Not knowing what was going on in her life, complicated by migraine headaches, memory loss and cognitive difficulties, Beth became as stressed as I was…and that caused me more stress!
The Independence Thing
A primary thought on the mind of high-functioning brain injury victims is to gain more independence in their daily lives, whether they can actually do it or not. Sure, they all believe they can. And they can…with appropriate strategies that compensate for memory problems and thinking problems. Behavioral problems become more manifest through anger and cursing because they are not experiencing the independence they desire.
Family members or the family caregiver feels the stress as well. How much do I let them do? When should I step in … and get my head chewed off. Because you will get your head chewed off! Or some other part of your anatomy. For as long as we’ve been married, Beth and I have walked down the street holding hands. Oh, she did not want me holding her hand as she struggled to regain her independence. One day as she began to step off a curb in front of a car, I thrust my arm out to stop her. Her head jerked my direction, and I could see the daggers in her eyes. I had blocked her independence. She had not seen the car and, as much as she was concentrating on my interference into her life, I’m not sure she ever saw it.
Chapter Six of our book is titled Cycle of Reponse. It explains the five steps of the cycle: mental fatigue, confusion, frustration, guilt and depression as well as steps that can be taken to back away from that dreaded depression. The words are there for both the brain injury victim and the family members. Family members run up and down the cycle as well. It is essential that family caregivers guard against becoming over-stressed. Yeah, that’s easier said than done; trust me, I know.
Read more about Stress:
Stress and Stress Management Solutions
Stress Causes Physiological Changes
Stress Management with Guided Imagery
Long Term Stress Management Solutions
Additional References:
Larry and Beth, I had no idea what you two have been going through. I remember you as a very affectionate couple. Can’t wait to see you at Sid’s. Susan