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What I've Learned Since Becoming My Son's Caregiver After His Traumatic Brain Injury

When my son, Steven, was diagnosed with a severe traumatic brain injury (TBI) in August 2012, I was in shock. I remember the healthcare providers kept repeating the word “caregiver,” over and over. I felt like they were determined to make me — of all unqualified people — claim that title. I couldn’t grasp the idea that they wanted me to become his caregiver. I wasn’t qualified to take care of him and I wanted to scream it out loud so they could hear me.

At that time I was suffering from the effects of double trauma. It was a nightmare the day we got that knock on our door and heard the worst news of our lives as parents. My first-born son, Aaron, didn’t survive the accident. Steven did but he sustained a severe TBI.

I didn’t understand why the medical providers weren’t checking the credentials of qualified professionals to fill this utmost important role of taking care of Steven, if he woke up from his coma. Here’s a confession… I remember telling them I couldn’t do it, “Thank you for your vote of confidence, but I am not qualified to be Steven’s caregiver!” The responses were sad smiles, pats on my shoulder and head shakes of despair from professionals at a loss for words.

After all, how would I grieve the loss of Aaron, if I was expected to step in as caregiver to Steven?

It’s been six years and I am proud to say, without regret, I did step up. Becoming Steven’s caregiver is the most rewarding professional title I have ever held. 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.

I will never forget the dreaded day — a month after the accident due to Steven’s fragile state — when my trembling lips whispered into his fragile ears about his brother Aaron’d death. But Steven didn’t give up. Instead the news of his brother’s death made him fight harder. He dedicated his recovery to Aaron. Through numerous major surgeries, blood, sweat and tears, Steven kept his word to his brother. He has made me so proud to be his caregiver and it has taught me so much.

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

The list of lessons I learned actually go on and on.

Every day I continue to learn more and I embrace it. I also embrace being there for other caregivers, because I have experienced it up close and personally. Here are a few things I want other caregivers to know.

  1. The caregiver manual sucks! Oh wait, you never received one, me either! That definitely sucks!
  2. It’s OK, and a must, to ask for help.
  3. You are not expected to know everything about caregiving. Tap into available resources and research to find them.
  4. You can take a break, it’s mandatory.
  5. Don’t hide your tears.
  6. Don’t feel guilty for laughing; it’s medicine for the soul.
  7. When asked if your smile is genuine, keep on smiling, it’s so much better than a frown.
  8. Exercise! A 30-minute walk is powerful.
  9. Pray, meditate, whatever your belief, it’s essential to your well-being.
  10. Breathe! (As in deep, to-the-core breathing.)
  11. 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.

Photo credit: Suphansa Subruayying/Getty Images

A version of this story was originally published on brainline.org.

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