U.S. Air Force photo by Airman 1st Class Monet Villacorte
As a caregiver for a husband with traumatic brain injury (TBI), Rosemary Rawlins shares insights garnered from her own experiences along with insights from other caregivers and family members in her blog, “Learning by Accident,” on BrainLine. Caregiving can trigger a host of emotions. In this blog post, Rosemary shares advice on coping with a particularly awkward and often shameful feeling that sometimes surfaces when caring for a loved one with TBI — embarrassment.
The wife of a brain injured man with behavioral issues recently asked me if I ever felt embarrassed of Hugh and how I handled it. When she asked me this question, I could sense the pain in her voice along with a shameful sadness weighing her whole body down. I answered honestly and said I felt that way a few times in the past, and we agreed it’s an uncomfortable and difficult emotion to cope with.
I’ve been thinking about this for several days, and have come to a few conclusions. In a previous blog, I spoke about the three truths we tell ourselves, one of which is “the truth we won’t even tell ourselves.” Embarrassment may be one of those truths. Merriam Webster’s dictionary has several definitions of embarrassment, but the one that resonates for the purposes of this discussion is “to become anxiously self-conscious.” For me, these feelings only occurred outside the protective shell of our close connections (hospital and rehab, family and close friends), out in the world where people didn’t know the back story of Hugh’s appearance and behavior.
There’s a social taboo associated with embarrassment that says that if you love someone, he or she shouldn’t embarrass you, or if that person embarrasses you, you don’t love him or her enough. So, it follows that if you feel embarrassed by someone you love, you feel a sense of guilt or betrayal.
As a caregiver, you may feel embarrassed for your loved one rather than embarrassed by them. For instance, if the person with the TBI spoke very fluently before the injury and afterward can’t seem to express simple ideas, the caregiver might feel a sense of embarrassment for that person who valiantly struggles to communicate and fails.
Or, maybe you do feel embarrassed by them. No one wants to feel that, let alone admit to feeling that. But, I would venture to say that the feeling isn’t uncommon. If the person with the TBI has behavioral or impulsivity issues and acts in ways that are completely the opposite of the way they once acted, it can cause embarrassment for the caregiver, especially if the injured person is verbally abrasive or abusive. Feeling this embarrassment can lead to social isolation.
Let’s face it, we’re all attracted to our partners for their appearance, demeanor and special qualities, such as sense of humor, intellect or generous spirit. If that person suddenly changes dramatically it’s obvious that we — the spouse, caregiver, partner — will react to that change. The first step as a caregiver is to cut yourself some slack. You have reasons to feel the way you do.
Sometimes a person with a severe TBI can look physically different in a way that he or she attracts stares from others. In the first four months after his crash, Hugh attracted a lot of stares. In truth, he sometimes appeared drunk or wild-eyed. He leaned to one side due to weakness on his left and dragged his left foot as he walked. I started to feel embarrassment covered with anger. The anger came because I realized that people were judging Hugh without knowing anything. I also felt like they were judging me. I took offense. I projected their reaction to him onto myself because I felt embarrassed, but I didn’t want to admit it. Could I be embarrassed by the man I love most? That very thought cut through the heart of me.
We live in a society full of unspoken norms. Life events can change the very norms we live by in our own lives. There are some people who by their compassionate nature rarely judge others. On the flip side, there are many people who unfairly judge whole sectors of the population based on stereotypes or mistaken beliefs. Some people believe that everyone has the power to control themselves, be civil, pick themselves up by their bootstraps, interact in socially acceptable ways … and if they don’t, they’re deadbeats and losers, not people with unseen traumatic injuries.
Family members of people with TBI absorb many of the painful blows from these emotional punches. If you’re a caregiver, ask yourself a few questions:
- Am I embarrassed for good reason? Has my loved one insulted someone, violated the law, or physically hurt someone? If so, the responsibility for that behavior should be placed squarely on the person with the TBI and dealt with in rehabilitation, counseling or a physician’s office.
- Am I embarrassed about appearances? Is this about my own vanity? If so, admit it to yourself and learn from it so you don’t hurt others in the way you are feeling hurt right now.
Embarrassment should never limit you from living your life. If you carry yourself with dignity and offer compassion to others, there’s nothing to be embarrassed about.
Find resources for caregiving support at Defense and Veterans Brain Injury Center, BrainLine Military and BrainLine. For questions on TBI or to be directed to resources in your area, contact the DCoE Outreach Center at 866-966-1020, firstname.lastname@example.org or online chat.
View other blog posts by Rosemary.