Caregiving: Lessons and Confessions

After my son was diagnosed with a severe Traumatic Brain Injury in August 2012, despite the shock, I remember hearing Steven’s healthcare providers repeating the word caregiver, over and over, as if they were determined to make me, of all unqualified people, claim the title. From the effects of double trauma, my own jarred brain could not grasp the reality that they were talking about me changing professions. I could not understand why they were not checking the credentials of qualified professionals to fill this utmost important role of taking care of my only surviving son, Steven, if he woke up from his coma. I felt an urgency to scream that nowhere on my resume indicated that I was qualified to take care of a severely, brain injured son. After all, how would I grieve the loss of my firstborn son, Aaron, (He did not survive the same accident that caused Steven’s TBI) if I was expected to step in as caregiver to Steven. It all felt like a nightmare, one that I was more than ready to wake up from.

There’s no candy-coating what happened after the knock on our door, delivering the worst news of our lives as parents. Indeed, it was a nightmare! Aaron didn’t survive the accident; Steven did sustain a severe TBI. My first confession was voiced to every professional that would listen: “Thank you for your vote of confidence, but I am NOT qualified to be Steven’s caregiver!” The responses I received were not audible. Instead, I received sad smiles, pats on my shoulder, and head-shakes of despair from professionals at a loss for words.

Six years later, I can proudly say, without regret, I did step up. I changed professions. Being Steven’s caregiver was the most rewarding professional title I have held. Another confession, it’s not for the faint of heart, and payment is not in the monetary form. I honestly didn’t think I had it in me, but I knew I had to do everything possible to get Steven through the most critical days of his life.

Caregiver lessons not embraced in the workforce:

• Quitting is not an option
• Deficits don’t define, they refine
• A positive attitude changes your day
• It’s okay to laugh at yourself
• Mistakes are fixable
• Take time to do a little something to make a big difference in the life of others
• Don’t focus on the outside, respect the beauty on the inside
• Be kind, always
• Random acts of kindness should be a daily practice

The list of lessons goes on and on. I embrace each, while continuing to learn.

Due to Steven’s fragile physical and emotional state, he did not learn of his brother’s death until a month after the accident. I will never forget the dreaded day when I whispered those horrible words from my trembling lips into the ears of my fragile son. It was that moment, despite boot camp rehabilitation that Steven dedicated his recovery to his brother. Steven didn’t give up, the fatal news made him fight harder. Through numerous major surgeries, blood, sweat, and tears, Steven kept his word to Aaron and made me proud to hold the prestigious title of his caregiver!

After experiencing caregiving up close and personally, I embrace the importance of being there for other caregivers. Caregiving is terrifying, exhausting and isolating. I was blessed to have a cooperative patient, devoted husband, supportive family, friends, and community. Not everyone has this, which is heartbreaking.

My list of confessions is longer than my allowed blog space, but in hopes of reminding other caregivers that you are not alone, here are a few highlights:

• My son’s TBI struggles will be shared when appropriate, but his privacy will always be honored
• The caregiver manual sucks! Oh wait, you never received one, me either! That definitely sucks!
• It’s okay, and a must, to ask for help
• You are not expected to know everything about caregiving. Tap into resources, they are out there, but you have to seek them out, no one knocks on your door with a caregiver’s care package
• You can take a break, it’s mandatory
• Don’t hide your tears
• Don’t feel guilty for laughing; it’s medicine for the soul
• When asked if your smile is genuine, keep on smiling, it’s so much better than a frown
• Exercise! A 30-minute walk is powerful
• Pray, meditate, whatever your belief, it’s essential to your well-being
• Breathe! As in deep, to-the-core breathing
• Take time for yourself! This has been most challenging for me; I’m still working on it! We can’t be present for those that need us if we neglect our own needs.

Most importantly, regardless of diagnosis, titles, or life situations, we can all agree that we live in a hurting and divided world. May we love respectfully and unconditionally. Instead of knee-deep ocean love, go all in, as in ocean bottom, exhilarating love, also known as the no-regret kind of love, which we all ultimately crave and need.