While no family is ever prepared for the life changes a brain injury brings, almost every family following a brain injury wants to know how they can help during the recovery process. Immediately after a brain injury, it's common for families to place all their energies and focus onto the person with the injury. As the person begins to move through the rehabilitation process, family members begin to ask questions that extend beyond the person's physical well-being. They want to know about what kinds of programs and services are available, and they may even seek out a brain injury support group to help gain additional insight about dealing with brain injury.
After some time has passed, families begin asking questions about the long term. They want to learn ways they can minimize the damage caused by the injury, and they want to find ways to improve the quality of life for everyone in the family.
NeuroStorm of the Century, Part 2 of 3: All Forms of Communication
As weeks and then months went by, the monitors were gradually removed and it became more important for family and friends to communicate with nursing staff regarding Josh's neurostorms.
Five Meaningful Ways to Love the Caregiver in Your Life
As a caregiver who often feels lonely and overwhelmed, I’d like to offer some practical solutions that have been helpful to me.
Compassion with a Catch
Immediately following a brain injury, outsiders often reiterate to survivors how grateful they are for that person’s survival and how accepting they plan to b. But when put to the test in everyday life, we quickly discover it’s tough to respond with unwavering compassion.
The Path of Love
Four years into the world of brain injury, caregiving, educating, processing my own grief and the extensive list that goes with a situation like ours, I have learned a lot about love and its often quiet, unseen force.
As a survivor, I distinctly define the before and after. Everything was profoundly different in the before, and now we exist in the after. I can almost see the marker in my mind. This is what the after looked like a few nights ago...
It’s Okay Not to Be Okay
Four years later, as some of the dismal fog lifts, I can see that out of fear of letting anyone down, there have been many times that I’d proudly adorned the “I’m fine” mask. The truth is, there is no way to be the same Mom, wife, daughter, sister, aunt, friend or anything after every fiber of your being has suffered radical rewiring.
Drawing the Line
When to stay? When to go? When to get professional help? These are some of the hardest questions we will face in our post-TBI lives. These are gut-wrenching decisions to make. I know that not only from my own experience, but from the network of caregivers I communicate with everyday.
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.
Make time for yourself, so you can make time for other people and other things. Put yourself last, and you will begin to fail miserably at the roles and responsibilities you aim to fulfill.
No Such Thing as Fair
In the world of brain injury, the closest we will ever get to fairness is achieving balance. Some days you get what you need and other days you don’t.
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.
Embrace the Suck
This is the darker side of brain injury, and luckily not every family has these dark moments. However, many do.
The Magic of Moments
The interesting thing about brain injury is being left with a before and after—lifetimes separated by that one moment that changed everything. Last week Nicole and her family set out on an old, but once again new, adventure...
It can take years to accept a loved one’s afterlife, and it may take a decade. I’m not talking about life after death; I’m talking about life after a family member’s brain injury.
A New Kind of Optimism
“This isn’t a sprint, it’s a marathon.” We needed to slow down because this thing was going to be with us for a while. The quote reminded our family to conserve our strength, energy, and abilities to stay the course...
A Delicate Pendulum
As TC and I prepare for the upcoming birth of our second child, my head is filled with all the anticipation and questions you’d expect from any new parent. But it’s also filled with the unique worries that can only accompany the experience of expanding your family in the aftermath of brain injury.
One More Day
Healing is a process, and some might say we go through life in a constant state of healing from discomforts large and small that our bodies suffer daily. And then there are the big health events — the events that change nearly everything and rearrange our lives in ways we never saw coming.
What just happened? Can I handle this? And the one question many TBI spouses ask themselves: Will my husband ever be the same? Will I ever be the same?
Shout-out to All the Superheroes
Since his injury, my husband and I have come to agree on one point: we will never fully understand each other’s struggle in this mess. And while we can never hope to fully appreciate the depth or complexity of each other’s experiences, we do our best to stay constantly respectful of the hard work that keeps us going.
Best of BrainLine: Caregivers Helping Caregivers
In honor of Brain Injury Awareness Month we've gathered some of the most powerful caregiver content we've ever presented.
An Unexpected Miracle
I was finally able to do something that I’ve not been able to in several years. And I was able to do it with new hope.
Dinner with the Elephant
It’s called ambiguous loss. A loved one is physically present, yet transformed in countless, often subtle ways, that alter his essence. For couples coping with brain injury, it’s the elephant in the room.
The Unfixable Mess Inside
If someone you care about has a loved one who has sustained a traumatic brain injury and they tell you all is well, don’t believe them. Look beyond the surface.
Living a Complicated Life After Brain Injury
Recently, life unfolded in a way I never saw coming. The raw, gut-level emotional pain was unimaginable. And for the first time ever, I decided that a topic was too raw, too real, and too emotional to even consider writing about. Until now.
What TBI Teaches Us About Endings
Through twenty-four years of marriage, I believed we had a connection that nothing could sever, and then his brain injury separated him from our past.
The Not-So-Good Days
The bad days suck. They suck more than we let on to most people, and they drain us emotionally for days afterward. Perhaps the best way to describe it is this...
Families who have survived traumatic brain injury know when life is really hard and when it’s not.
Distractions and Diversions = Survival
A moment of being distracted means a moment of escaping my reality… Maybe, without realizing it in your own stressful situation, you have practiced what I call "distracted survival skills."
In learning the stories of other TBI survivors and caregivers, I feel an immediate kinship, a sense of connectedness to those with a shared experience. But there is also a downside.
In the midst of crisis, between panic and hysteria, thoughts creep in. How did this happen? What could I have done? These questions form the beginning of a long line of self-recriminating thoughts that haunt many caregivers...
How Transparent is Too Transparent?
I feel like I have mastered the face-to-face challenges I used to confront when asked about my health. But it’s my written work that still often causes me angst. Like a human-sized pendulum, I swing back and forth about how much I should share. How transparent is too transparent?
Fractured Family Tales
Family life after brain injury? It’s complicated. People walk out of your life without explanation, without just cause, leaving you to wonder what the heck happened.
Life Goes On
Gretchen Rubin, once wrote, “The days are long, but the years are short.” She was writing about parenting and not traumatic brain injury, but as I reflect on this poignant quote, I realize that as a caregiver, even those seemingly endless days have passed with such speed that I can hardly account for the last three years of my life.
Compensatory Strategies for TBI Caregivers
It’s well documented that stress affects our ability to concentrate, remember, and sleep, and I don’t think there are many stresses equal to the days and weeks immediately following a severe traumatic brain injury...
The Kid(s) are All Right
Sometimes I wonder if I’m underestimating Jack’s awareness of the situation. Perhaps it’s not so much that he doesn’t notice, as he doesn’t let it bother him.
How Abraham Maslow Can Help Us Understand Life After TBI
It’s easy for us to think people could do better after they look better, to want to say, “Please try harder!” But when we see all the needs that must be fulfilled before a person moves from one level to the next, the picture becomes clearer.
People in My Boat
I know there will always be days when I cry my face off because of what happened to my dad, but I have learned that the best remedy for the unfairness is meeting the daughters and sons and wives and brothers and friends of others who have been where I have been.
Who to Trust?
Of all the things I was warned about following TC’s brain injury diagnosis, no one suggested the idea of mistrust or suspicion. I didn’t anticipate waking up one day, twelve exhausting and painstaking months into his recovery, to find myself on trial, accused of harboring ulterior motives and secret plans...
The New Normal
We’ve arrived. It’s taken two and half years to get here, but I now cautiously declare that our family has reached that elusive, indeterminate state of being otherwise known as the “new normal.” What I didn’t expect, however, is that it would take so long for the new normal to finally take hold. Or, like I wrote last month, that it would be so fragile.
Does Acceptance Mean Defeat?
Life changes in a million small ways that others cannot see when a loved one is suddenly brain injured. Few understand why caregiving spouses are grieving. After all, you should be grateful that your loved one is still with you. Right? Of course…and yet….
Brain Injury Awareness
March is brain injury awareness month. It’s the dead of winter in these parts and about the time of year when my dad starts to get bored. And when my dad gets bored, he gets in trouble. I feel all the heat and sorrow of this brain injury pour over me yet again.
Playing Defense After Traumatic Brain Injury
As I began my second life as a brain injury survivor, I found myself having to play defense against stunningly hurtful and relationship-ending accusations.
The Power of Our Words
Doctors and therapists are stuck between a rock and a hard place. I get it. Offer too much positivity and create false hope. Steer too negatively and crush people’s spirits. I don’t envy their position.
How Negotiating Saves Caregivers Money, Time, and Sanity
My husband Hugh had a mantra for life and business, "Everything is negotiable." Remembering these words after his TBI helped me many times over.
Is the Past History?
There I was again, gripping onto a past that had no place in the present.
Craniectomy: Life on Hold
Rosemary remembers when her husband underwent his craniectomy, "As I waited for him to be 'put back together,' I felt as if our life was on hold."
When You Least Expect It
BrainLine blogger Janna Leyde reminds herself that expectations can be tricky traps. "They will rule everything if you let them, but their rules can be unfair."
The Christmas Exchange
"Christmas makes me anxious," writes BrainLine blogger, Janna Leyde. For her family, the holidays have changed since her father's TBI. Yet, they've still found a way to focus on what's most important.
Relationships After Brain Injury — Where There's Life, There's Hope
Relationships often change after a TBI, and sometimes the losses can be painful. BrainLine blogger, David Grant, shares his story.
Playing the Glad Game
BrainLine blogger, Janna Leyde, embraces the "glad game" by finding ways to be grateful, even in the face of her father's TBI.
To Share or Not to Share: Life After Brain Injury
Being defined by your brain injury is different from sharing with a loved one what needs to be shared about the symptoms, says Brainline blogger David Grant.
Celebrating Her Loving, Wild, Red-Headed Boy
"I’d burst through the ICU doors like one of Charlie’s Angels; I was there to do my job, to do anything to help Mark get better.”
BrainLine blogger Rosemary Rawlins talks about a powerful new novel that takes on the complex nuances of brain injury in a family.
The Chicken Book
BrainLine blogger Janna Leyde talks about the power of stories, back when her father was first injured and now, sharing her own with others.
I Love the Now
Janna Leyde wonders if fully loving the new version of her father is strangely like cheating on the old, pre-injury version of her father.
A Case of Miracles
Libby Beemer talks about her daughter’s recovery from a devastating car wreck and the “meaning of Sam.”
Mistakes, Risks, and Sex -- It's Adolescence!
Adolescence is awkward, yet it transforms our identity. A brain injury added to the mix can make those years even more challenging.
Can a Hit to the Jaw Cause TBI?
The jaw, skull, neck, and brain are all connected. A blow to one can cause damage elsewhere.
When We Show Up
For Janna Leyde, her father, and her other students, yoga is often "the path away from the unfairness"
A sister looks back at how her brother's severe brain injury continues to affect her life and that of her family.
Pia Pearce on Being Kevin's Mother -- Before and After Brain Injury
After snowboarder Kevin Pearce sustained a severe brain injury, his family pulled together — a tight circle of love, support, and positivity.
To the Kids
Brainline blogger Janna Leyde writes a letter to other kids out there like her who have a parent with a brain injury.
BrainLine blogger Janna Leyde talks about the ongoing struggles of growing up with a father — and family — that changed because of a brain injury.
Square Pegs in a Round World
Abby talks about how she realized that her husband's recovery was not going to be black or white, whole or unwhole, perfect or not perfect.
Time Warp or Puppy Energy?
Janna Leyde talks about the "small, fuzzy, blonde being" that is bringing out the two parents she has not seen in years.
An Old Rag Doll and Family Love
A song Rosemary's father used to sing around Christmastime taught her the power of empathy.
Can Children Cope with Both Parents Lost in the Trenches of TBI?
Rosemary talks to her twin daughters about what life was like after their father sustained a severe TBI and the years that have followed.
All About My Mother
"My mother is amazing. Sometimes I tell people she’s an alien because there is no one I know like her," says Janna Leyde about her mother in the wake of a TBI that changed their family.
The End of Childhood
Rosemary Rawlins believes, sadly, that the day her twin girls' father was hit on his bike and sustained a severe brain injury was the last day of their childhood.
BrainLine's new blogger Abby Maslin asks: Can you be mostly grateful but still wish this terrible thing would go away?
Home-Based Residential Care Can Help You Care for Your Loved One with Brain Injury
People with TBI should be able to receive services that allow them to live in community-based settings and achieve maximum independence.
He Never Liked Cake
A brain injury can turn a family's life upside down. Add in adolescence. Read an excerpt from Janna Leyde's coming-of-age story — raw, honest, funny, heart-breaking and heart-affirming.
Creativity in Caregiving
Loving wife and teacher Abby Maslin uses her creativity and teaching skills to help her husband recover from a severe TBI.
"Growing up with a father with a TBI is complicated, un-ending grief without closure. It’s the opposite of resolution. It’s missing someone like hell who’s still alive and with you."
Rosemary talks about how planning for life’s unexpected emergencies is never easy or comfortable, but in the long run, it can save a lot of heartache.
"Think for a moment about the best gift you have ever received. What made it so different from all the rest?" Rosemary shares one birthday present she will treasure forever.
Paper Trail or Trial?
Before Hugh’s injury, I loved getting mail in my mailbox. Afterward, I dreaded adding another pile to the piles of mail that permanently resided on my desk, office floor, and living room table.
Life Out of Order: A Story of Sibling Loss and Living with TBI
Sally Laux has lost her three brothers — two to death, one to a severe TBI — and yet, as she walks on a landscape of new textures and colors, she somehow continues to find meaning in her life.
Two teenagers. A dark road. A drunk driver. This excerpt is from a beautiful book about the journey from grief to gratitude to grace by a pediatrician-mother.
Growing Up with Brain Injury
This is a glimpse into the life of a girl whose father sustained a brain injury. Her life continues to be defined by the moment of her father's car crash — for better and for worse.
Helping Children Cope with Head Injury in the Family
Children who have a close relative, particularly a parent, with a brain injury face many challenges. Learn how children can be affected and how to help them and the adults caring for them.
Writing for Two
For physician, writer, and mother Carolyn Roy-Bornstein, writing was the way she made sense of the world, but after her son sustained a brain injury, she found she was also writing for him.
Parenting Practices Affect a Child's Recovery Post-Brain Injury
More authoritarian parenting practices led to lower adaptive functioning in children post-TBI.
My Daughter with a Brain Injury Acts Like a Teenager
Skills required for parenting can be taught but a safe, loving environment is critical.
No Stone Unturned
From the moment the Goldsteins adopted Bart from Korea, they pulled out all the stops to give him a good life. Especially after he sustained a severe TBI.
How to Deal with a New, Angrier Version of a Beloved Husband and Father?
Family counseling is crucial to help everyone deal with the emotional effects of a brain injury.
The Importance of a Family-Focused Approach to Treating Brain Injury
Supporting the physical and emotional well-being of the person with TBI and the caregiver will ultimately help the whole family.
Learning by Accident
Sometimes our fear can be more debilitating than a TBI. One caregiver shares her story of ambiguous loss, family love, and emotional healing.
Everything You Wanted to Know About Counseling After Brain Injury But Were Afraid to Ask
Life after a brain injury can be overwhelming for both the survivor and family members. Learn how counseling can help.
The love of a family makes a world of difference after a brain injury.
Learning to Let Go, Again
A day with friends on the links ended Ryan's life as he — and his family — knew it, but their life includes many more happy chapters.
Libby Parker: Finding Her Rhythm
In the last chapter of Naomi Parker's book about her daughter’s brain injury, Libby was starting her senior year of high school. BrainLine wanted to find out where she is now.
Anne Forrest: Bringing Up Baby
By the time baby Daniel arrived, Anne Forrest “had been practicing having a baby for a long time.”
TBI Ten Years Later: A Mother's Story Continues
Ten years is a long time, but the shock and sadness of a child's TBI never goes away.
Flat Affect and Brain Injury
A brain injury can sometimes limit a person’s ability to express emotions — temporarily or permanently.
When the Unthinkable Happens: Support for Siblings After a Traumatic Brain Injury Strikes a Family
Taking care of seven children when one sustains a life-threatening TBI: one mother's story.
Why Has My Sister's Personality Changed Since Her Traumatic Brain Injury?
Emotional regulation can be challenging after a brain injury.
My Child's Brain Injury: Family Matters
Learn about common strategies that some families use to help them feel supported and strong after one of them sustains a TBI.
Understanding TBI, Part 4: The Impact of a Recent TBI on Family Members and What They Can Do to Help with Recovery
A brain injury affects the whole family. Use these strategies.
Victimization of Persons with Traumatic Brain Injury or Other Disabilities: A Fact Sheet for Friends and Family
Victimization is harm caused on purpose. It is not an “accident.”
Life with a Brain Injury: Preparing Yourself and Your Family
There is no preparation for a brain injury, but knowledge and action in its wake are key for the whole family.
Enjoying the Holidays After Brain Injury
Adjusting routines and expectations after a loved one's brain injury.
Siblings of Children with TBI. What About Them?
Watch for changes in children’s behavior after a sibling is hurt.
Caring for the Caregiver
Taking care of yourself helps take care of your loved one.
Online Family Problem-Solving Tool
Learn how this online intervention helped adolescents with TBI and their families.
The Greatest Challenges Faced by Families After Brain Injury and How to Overcome Them
Learn why setting goals and taking small steps are crucial.
Taking Care of Yourself: 10 Tips for Survivors and Family Members
Take this true/false test to see how well you rate.
Problem Solving for Families After Brain Injury
Learn five crucial steps.
Living with and Having Mixed Feelings About a Survivor Who Is Very Different
Changes that normally follow brain injury are hard to comprehend and accept, especially for spouses and parents. This self-assessment can help you cope.
Learning to Be Patient with the Idea That Recovery Takes Time
Unfortunately, there are no quick fixes after a TBI.
Fundamentals for Living Better After Brain Injury
Ways to feel more satisfied with your life.
Family Change After Brain Injury
Feel like your life has totally turned upside down? You are not alone.
Don’t Forget to Take Care of Yourself (Too!)
Take this test and see how you rate.
Coping with Loss and Change
Rate yourself and learn some helpful tips for life after brain injury.
Communicating with Patients and Families About TBI
Information about brain injury is the number one need.
Avoiding Guilt and Blame
For people with TBI and their family: Use this self-assessment to work through your emotions.
Finding Respite Care
Respite care is always in short supply. Learn more.
The Truth About Divorce After Traumatic Brain Injury
What you can do to reduce the risks.
The Water Giver
The story of a mother, a son, and their second chance after a brain injury.
Mindstorms: The Complete Guide for Families Living with Traumatic Brain Injury
Learn two of several brain injury myths from this book excerpt.
Spirited stories and advice from Lee Woodruff — from all she has learned since her husband's TBI.
Online Safety for Children with LD
All children are at risk for being bullied or harassed, but for those with disabilities, bullying is more prevalent.
Stress Management Following Brain Injury: Strategies for Families and Caregivers
A TBI often brings stress for the whole family. Here are steps to help.
What Happens to Relationships After Brain Injury?
Strategies to overcome feelings of loneliness and isolation, and to rebuild or create new relationships.
Brain Injury: Why Does My Loved One Act Out?
Learn more about the emotional and behavioral changes after a brain injury.
What You Need to Know in the Immediate Aftermath of Injury
A useful list to help other families and caregivers, created by a long-time caregiver.
Why Me? Why My Family Member?
Do we know the precise incidence of traumatic brain injury?
Concussion Recovery: Parents Play Important Role
Key steps for families to take.
A Family Caregiver Speaks Up
Steps caregivers can take to have more control in their lives and in those of the people for whom they are caring.
TBI Consumer Report: Coping with Substance Abuse After TBI
Substance abuse is especially tricky when it comes to people who have a brain injury.
TBI Consumer Report: Parenting Post TBI
Research on how parents with TBI meet the challenges of raising children, and how the children fare.
A Hard Chance
A love story — before and after a devastating brain injury.
The Blurry Line Between Helping and Harming After TBI
The joys and challenges of one mother whose son has a TBI.
Hold My Hand
Read how one mother found hundreds of strangers to help her care for her son with a brain injury.
How to Talk to Children About Brain Injury
Strategies to help your children understand all the changes happening after a brain injury in the family.
Holding A Family Meeting
Help your loved one with a brain injury by learning how to work cooperatively as a family.
Managing Stress Effectively After TBI, Part I
Stress weighing you down? Learn some easy ways to manage stress related to TBI.
Management of Behavioral Problems During Acute Rehabilitation of Individuals with TBI
Behaviorial issues can be significant challenges to rehab staff.
Children with Traumatic Brain Injury: A Parents' Guide
Learn to help your child adjust after a TBI.