In the brain injury world, there are taboo subjects that family caregivers can't wait to talk about among ourselves. The dark side of personality change is at the top of the list. In my recent post, After Brain Injury: Learning to Love a Stranger, I shared my experience of building a new relationship and marriage with my husband Alan. Alan suffered a severe anoxic brain injury following a massive heart attack and cardiac arrest.
Most of the time, Alan displayed his engaging pre-injury personality marked by kindness, love, curiosity, and humor. However, post-injury personality changes also meant that we dealt with bouts of intense anger, confusion, and unpredictable behavior. Sometimes his moods shifted so suddenly that I called it "Jekyll and Hyde syndrome." It was as if two versions of Alan resided within him. One was rational and easy-going, but the other was frightening and even dangerous at times.
First, some background. Brain injury sometimes causes subtle or pronounced changes in personality. Damage to specific areas of the brain, including the frontal and temporal lobes, amygdala, and hippocampus might leave the survivor vulnerable to agitation, volatile emotions, memory impairment, verbal attacks, physical aggression, and impaired impulse control.
Physical vulnerability combines with emotional responses to life changes to cause problems. These problems might occur only occasionally, or be a repeated challenge to daily functioning and relationships.
Alan had damage to the areas above, and that meant his executive functions were impaired. Executive functions refer to the complex group of skills we use to plan, make decisions, problem solve, self-monitor, make sound judgments, and get along with others. He also had both short and long term memory impairment. The combination, not uncommon in severe brain injury, was the "perfect storm" for behavioral outbursts. The angry outbursts could be triggered by his awareness of losses, wanting more control over his life, or not understanding the reasons behind safety measures such as no longer being able to drive his car. I understood that they were an attempt to communicate distress and handle the situation as he saw it.
We worked hard to prevent and minimize the outbursts, and to use strategies to improve communication and self-control. However, there were plenty of times when Alan's darker side emerged.
Brain injury can also contribute to psychiatric issues including depression, severe anxiety, substance abuse, or obsessive compulsive disorder. Some survivors experience post-traumatic stress disorder (PTSD) as a consequence of the circumstances and medical events that caused the brain injury. In addition to damage to specific areas of the brain, Alan's brain injury disrupted the production and function of neurotransmitters thatinfluence mood and thought regulation.
We quickly learned that anxiety or depression made Alan more susceptible to angry outbursts or threatening behavior. He often responded well to the judicious use of medications to modulate depression, anxiety, and agitation for years after the injury. We never used medications in place of attention, communication, behavioral strategies and keeping environmental stimulation within his comfort zone. However, I came to appreciate their value.
1. Disrupted trust—When we were getting to know each other all over again, the unpredictability of Alan's angry eruptions or accusations made it harder to rebuild the trust so essential for any relationship.
2. Personal integrity—When Alan remembered what he had said or done, he often felt ashamed, guilty, and "Like some other guy is living inside me, not myself."
3. Emotional pain—On many occasions, Alan yelled at me, and then took a nap to calm down. When he awoke, he couldn't recall what he had done and didn't believe my explanation. He would justify his response by saying, "Well, I yell at you because you deserve it; you control my life and won't let me drive." I'd be left feeling angry and hurt. Caregivers are human too, and even understanding doesn't cushion the sting sometimes.
4. Unresolved conflicts—I learned early on that you can't have a constructive argument with a person who has a brain injury or memory loss. Biting my tongue and suggesting a proven technique to calm down was more fruitful. And yet, I yearned to have the kind of argument couples have to clear the air and resolve a problem.
5. Decreased intimacy—There were several times when Alan said hurtful things and threw his clothes around in an agitated outburst. He quickly forgot the incident and suggested that we make love. I withdrew, since it took me days to guardedly trust in his predictability again.
6. Risk of injury—Alan never struck me, but he did hit his home health aide and threaten to hit others. When angry, he rallied his limited strength and could be dangerous. Families need training in how to prevent or deal with such incidents. Even health care professionals are unaware of how common verbal and physical aggression are at home.
In my memoir, Professor Cromer Learns to Read: A Couple's New Life after Brain Injury, I detail many of the strategies we found helpful to communicate more effectively and help Alan manage his emotions and behavior.
Visit www.janetcromer.com for more tips for caregivers.