The Expectant Caregiver

The Expectant Caregiver

When I press the elevator button to go up, I expect to go up. When I dine at a five-star restaurant, I expect a great meal, and when I get sick, I expect to get better, all the way better, until I’m in exactly the same condition I was before I got sick.

Eleven years ago, when Hugh sustained his brain injury, I expected him to get better — all the way better. I knew very little about the functions of the brain and even less about how his impaired brain function would impact the rest of his life. My expectations were unrealistic partly because I lacked information, partly because I experienced shock and denial, and partly because doctors could not promise me much beyond, “Let’s wait and see.”

Caregiver expectations can cloud over concrete facts. I now find it amazing how many times I had to be told that we would not go back to our old life before I believed it. No one could tell me what our new life would look like, just that it would be different in almost every way, and since I had no mental picture of this, I always reverted back to what I knew: our old life. As weeks and months went by, it became clear that this was it; this was our new life, and I was not excelling in this new life. I often felt overwhelmed, scared, and inept.

When we raise expectations in our minds that map out an unrealistic future, we set ourselves up for disappointment. In her book, I Thought it Was Just Me, Brené Brown discusses the concept of shame in depth, a subject I thought I knew something about, but it turns out I knew very little. She also discusses how many women strive for perfection in their relationships, families, workplace, and self-image. Falling short in any one of these areas can lead to shame. One example she offers is how working mothers do not want to be perceived as working mothers who need help. I could easily substitute “working mother” for “caregiver” and find many useful insights that paralleled my experience and feelings regarding vulnerability, shame, perfectionism, and resilience.

“When we choose growth over perfection, we choose empathy and connection. Merely letting go of unattainable goals makes us less susceptible to shame,” says Dr. Brown.

I’ve spoken to many caregivers who felt a common strand of emotions through their TBI caregiving journeys, among them: disbelief, dread, hope, extreme hope, then disappointment that led to shame, especially if their loved one could not attain the recovery they were expecting. We are told over and over through stories and media that anything is possible. Unfortunately, this is not true. Some people with TBI will not recover to the extent they want or their caregiver wants. When it becomes apparent that a loved one will not make a miraculous recovery, some caregivers feel shame because they had made statements like, “He’s a fighter. He’ll be good as new before you know it.” Or, “She’ll be back to 100 percent, just you wait and see!” Caregivers can feel like huge failures if they internalize their disappointment and feel responsible for the outcome in some way. Yet, unsatisfactory outcomes are not the failure of the caregiver or survivor, they mostly stem from unfamiliar circumstances and unrealistic expectations.

While we can’t always get exactly what we want, we can learn to accept what is without shame. We can release our idea of perfection and continue to grow as we increase our compassion, connection, and empathy. We can learn how to check and adjust our expectations so they don’t blindside us. The tools we need are available through TBI communities and resources like this book.

The next time you see a perfect caregiver, or someone who has “recovered” from a TBI who looks healthy and happy, remember that that person is likely dealing with lingering deficits, chronic issues, and many struggles each day that he or she doesn’t want to talk about. Perhaps these seemingly perfect people have just placed their expectations on a shelf they can reach, and have learned to strive for growth each day rather than simmer in self-reproach.

Comments (3)

Thanks for writing this. It's an unending cycle for both the caregiver and patient. Caregivers wait for us to get better and patients wait for our lives to go back to go the way they were pre-TBI.
Very good story. It. Is hard to be brain impaired but your story reminds me of the denial or misunderstanding my spouse still has seven plus years later. I keep the faith that se acceptance and understanding will come his way. Thank you for sharing
Almost 2 years after my 18 year old son suffered a horrific major TBI I am still surprised, overwhelmed, depressed & have feelings of incompetence as his mom & caregiver. Thank you for speaking about your experiences. I often feel alone in this, though I know I'm not. Your blog helps.