Learning by Accident

A blog about caregiving and TBI from Rosemary Rawlins

My name is Rosemary Rawlins, and as caregivers for loved ones with TBI, we share a unique bond. Each of us lived through that defining moment when our lives flipped upside down. Along the way, we’ve struggled to help our loved ones heal, sometimes at the expense of our own physical and emotional health, sometimes feeling lost and alone.

Here, in this space, focusing on caregiver concerns, I’ll share insights garnered through my own experiences along with insights from other caregivers and family members. I hope to encourage you – the caregiver – to appreciate the significance of the work you do, to find meaning in the loving nature of your work, and to explore ways to take care of yourself. Because, after all, caregiving is the most important profession on earth! Learn more about Rosemary >

The Latest from Rosemary

Dear friends...

Hope—love—tenacity—go for it—get mad, let yourself be sad—but don’t let the madness or sadness swallow you. These were repeated themes, said in a thousand ways for a thousand reasons. These are the messages we need to hear again and again.

Book Review: Love You Hard by Abby Maslin

BOOK REVIEW: Love You Hard: A Memoir of Marriage, Brain Injury, and Reinventing Love

This book packs a lot of wisdom. You’ll learn about aphasia; you’ll understand ambiguous loss; you’ll follow Abby down dark hallways and into sunlit rooms and learn what it means to own a life built on raw truth.

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The Unspoken Shame of Anger in Caregiving

I didn’t even know who or what I was angry at. Fate? Bad luck? The person who hit my husband with her car?

To Love What Is: A Marriage Transformed

I wish I had found Alix Kates Shulman’s memoir "To Love What Is: A Marriage Transformed" in the first month of my husband’s severe TBI, and yet I may not have absorbed it the way I did reading it fifteen years post-injury.

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Never Stop Asking 'What If?'

We imagine the what-ifs as a worst case scenario, our worst nightmare happening to us, our life falling apart. But here’s another way of looking at it.

Loosening the Caregiver's Grip

Are you a Controlling and Possessive Caregiver?

It happens slowly, like that metaphorical frog you’ve heard about. Possessiveness and controlling behavior in TBI caregivers is something that creeps up on you, and I suspect it is common — not because people are trying to be annoying, but because they care so much and want to see that their loved one is treated well in every respect.

Pity and Friendship after TBI

We’ve all see that face. The well-meaning face of pity: the downturned brows and lips, the misty eyes. After Hugh’s TBI, I seldom met a friend or acquaintance who did not flash this expression at me every time we met. My daughters felt it, too. The funny thing is, we did not want pity. We’d had our fill of it in the ICU.

Is Caregiving a Burden?

The truth is, all family members are both a source of joy and a burden at one time or another. That’s what family life is: the art of weaving webs of joy between strands of pain is what creates the intricate fabric of family love. It’s not the people in our care who burden us; it’s our anger over circumstances...

What Stephen Hawking Taught Us About Living with Disability

Stephen Hawking, a world-renowned scientist who recently passed away, had a brilliant mind that was trapped inside a paralyzed body, and I could not stop thinking about how the opposite is often the case with traumatic brain injury.

Surrender

To be a caregiver at home for someone who is severely injured is to surrender. You surrender your time, put your ambitions on hold, and surrender many of the simple pleasures. You also surrender your peace of mind, your good night’s sleep, and routine. But there are ways to make life a little easier and more enjoyable...

Should You Disconnect For a Happier Holiday?

Everything about the holidays screams HAPPY. And when you are feeling many things, but happy isn’t one of them, you can be drawn into despair.

The Impact of the Flat Affect on Families After Brain Injury

The Impact of The Flat Effect on Families after TBI

How do you love the man who can’t express emotions the way he did when you first fell in love with him? How long do you continue to gaze into eyes that don’t see your heart? How many times do you say, “I love you” to someone who doesn’t respond?

Racing Against the Past

I married an athlete, and this is part of who he is. I am trying to come to grips with my fear of repeating the past because I never want to go through anything like his TBI again. I’m not sure I could handle it. Does anyone have any words of wisdom?

Untangling the Vine of TBI

The greenbrier plant is not what it appears to be. It’s innocent looking while invasive. It comes raging back after you cut it down, and it can choke what’s underneath. If this sounds a little bit like traumatic brain injury, it is.

What Happens to Life When TBI Moves In

In the past ten years, I found myself laughing when I thought of Hugh’s pre-injury days—those glorious days when I thought I was so busy and hectic. Once the dreaded accident phone call came and I rushed to the emergency room, I discovered what busy was all about.

Pain, Joy, Glory, and Mystery

When a loved one sustains a serious head injury, there is certainly pain and hardship and the list of hardships is varied and long. TBI’s deliver potent cocktails of mental, emotional, physical, and psychological trauma not only to the injured person but also to their families.

Coping with the Imbalance of Giving and Receiving in Caregiving

Some caregivers I know feel as if they are giving to the point of depletion. While some who have sustained a TBI and receive care may feel powerless and resentful with no control. This imbalance on both ends can create friction and despair.

Intentions to Light the Way

As caregivers, the people we care for depend on us to be consistent and reasonable, stable and strong. Setting our intentions may be one way of realigning ourselves with our values and goals, so we can continue to give care in a positive way. With that in mind, I’ll share with you what my intentions are for 2017.

How Can We Help Each Other Going Forward?

I know this is a hard truth, one that many doctors and insurance companies will scoff at, one that many people might think is unrealistic, but caring for the caregiver in tandem with the person who has a brain injury is vitally important. TBI caregivers need to be educated about brain injury and what it entails.

When Caregivers Respond

Here’s a question well worth exploring for caregivers: Am I reacting to daily events as if in crisis mode or am I responding? After the chaos of the first days and weeks of TBI, there’s much to be done; and a lot can be at stake if things are not properly handled as time goes by.