Catapulted into Caregiving

Catapulted into Caregiving

April 13, 2002 is permanently etched in my mind. Like a firebrand, the date has seared me with both clear and hazy memories. My Saturday morning was like any other, full of weekend chores and activity. I didn’t even kiss my husband good-bye before he left for an afternoon cycling workout. I was certain he would return in a few hours, as usual. He didn’t. Instead, a stranger called the house at three o’clock in the afternoon.

“Do you know a cyclist?”

This five-word question marked the end of my life, as I knew it.

Nothing in my past prepared me for traumatic brain injury: the initial shock, the coma, the gradual awakening, the slowness, the quirky symptoms, and the deep sense of loss. Every minute of every day revolved around treatment and recovery.

The abruptness of these monumental changes in our lives tests us as caregivers. When the person who is injured is a loving spouse, you feel lost because you would have turned to that spouse for support — you need that spouse for support. This is your soulmate, your helper, and partner. I kept looking at Hugh, who now seemed so distant, and my mind screamed: Wake up! Tell me what to do. What do you want? What should we do?

Feeling isolated and frightened, I did what most of us would do; I leaned on people close to me. But none of my friends or family understood TBI, and none had been through an experience like mine. Looking back, I wish I had known a TBI mentor, a person who could truly relate.

I would have asked this mentor many questions. How did you cope? Was your relationship different? What did that feel like for you? How long was it before you could finally connect again?

All this happened nearly 11 years ago, before TBI appeared daily in the newspapers. War and football concussions have created many TBI headlines since then. The TBI caregiving community is growing as caregivers speak honestly about the challenges they face. When these stories and discussions reach the general public, more and more advocacy and funding will follow. There will be more resources and perhaps direct counseling for caregivers immediately after they are catapulted into caregiving for a loved one who has sustained a TBI … a much-needed parachute after the harrowing free-fall.

Here are just a couple caregiver forums you can connect with online:

  • AgingCare: Caregiver Forum

    A caregiver forum and support group providing caregiving advice and tips on elder care, caring for a parent, caring for a spouse and other senior health issues.

  • Caregiver Action Network: Care Community

    Caregiver Action Network (CAN) is the nation’s leading family caregiver organization working to improve the quality of life for the more than 90 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age.

Comments (16)

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One minute she was happy and confident, and then she just wasn't. Angry, unpredictable, sad, having seizures, losing weight, headaches, and "they" all said mental health issues. But they were wrong, and I knew it. She was being blown off. I pushed and pushed for answers and finally, after a year and a half of a nightmare none of us could wake from, a new neurologist looking at the MRI that took 8 months to get, and that showed "nothing," to the other doctors, said "I think they missed a head injury," as he pointed to an area of her brain. Now we knew, but all the anticonvulsants and other meds had also taken their toll. She now weighed 98 lbs, her hair had fallen out, she had medication enduced Lupis, and her marriage was over. She couldn't remember anything, even us, most days; she could barely talk anymore, and the PTSD meltdowns were taking a toll, and on and on, too many awful symptoms to list. But we started PT, OT, Cognitive and speech therapy, equine therapy, and hyperbaric treatments. Slowly she began to heal. She was taken off ALL meds, began gaining some weight, hair was coming back, words were coming back, memories too. I began to see her smile again. Today she is beginning to get some Independence back. I won't give up hope that she'll have a full and beautiful life!

The date of injury is a main marker of time for us. When trying to remember anything, the first filter my mind goes to is 'when was this in relation to the hit and run?' Like B.C and A.D. Only it's BTBI and ATBI..

Yes, everything is "before the incident" or "after the incident", where the incident was an agressive pick-up truck driver decided to run my motorcycle riding partner off the road.

You are so right about the "before" and "after" It does seem that our whole life is divided that way now. I like how you call it BTBI and ATBI. Here's hoping your ATBI improves with each passing day! Rosemary Rawlins
The person you want to talk to the most is the one person you can't talk to. Our date was May 29, 2007. I was told that every TBI is different and that they could not predict the outcome, but I found that there really is a common thread of change. I also wish there were someone to talk to at the beginning. It might have made it a little easier.
Oh my gosh, this is exactly how I have felt. I received my life changing phone call at 1:35 a.m. on Aug. 4, 1998, my 18 year old son fell out of the back of a jeep-like vehicle. Now everything is either BTBI or ATBI. So glad I found this blog because no one understands. Thank you.
I agree, (March 7th comment) that it's so hard when the one person you need to talk to is the one injured, and glad you mentioned that there is a common thread that binds us. We are a community, maybe not with all the same circumstances, but sharing many similar challenges and feelings. Thanks for commenting. Rosemary
My husband's injury was July 8, 2007 at 12:40am. A date I will never forget. We celebrated our 2nd wedding anniversary while he was in and out of coma. I feel the exact same way! I even expressed that to my mother-in-law next to his bed one day. She said to me "you don't know what it's like to have a child lay here" I responded with "you are right, I don't, but you don't know what it is like to have your husband lay here either. The one who promised you the world, who is your world. Promised that he would never leave (and at that point he was far from out of the woods) and there is a chance he will leave me alone. His TBI has changed our life and all outcomes are different. We are both 31 now and most people don't make it in marriage past the first few years. We have and are continuing to go strong. Is it easy on me..Nope, but no one ever said life would be easy. I'm going to check out the forums as I wish there were other people to talk to about more personal changes that we have to deal with. Especially at our young ages. Thank you for writing this is super helpful.
Wow! My husband was also injured during a cycling accident. I'd just gotten home from visiting a friend in the hospital when a stranger called to say "Your husband was hit by a car and they are loading him into an ambulance. It's pretty bad. You should come." It's been 2+ years since the accident but I'm just now struggling with life "after". His children have floated away from our day to lives and my children are having issues now - nightmares, worry... possible residual stuff from our post-TBI and PTSD life. Thank you for sharing your story and your journey. I just found you on Facebook. It helps me to know I'm not alone.
My son's accident was April 2, 2011 and yes,things are now dated before and after. I hadn't known anyone that had been through this before though a dear friend had dealt with a major illness with one of her children so she knew what to do for us every step of the way. Our family got through this due to our faith and our friends. They helped hold us together. I attended a TBI recovery support group with my son but it just wasn't the group for him or me. He was returning to college and work and the others in the group were too severely disabled. I too had returned to work so couldn't relate to those in this group. Our life rebounded back while others hadn't.
We never are prepared in advance for what happens to us, are we? They say experience is the one thing you get after you needed it. As terrible as it is that TBI is becoming more common (or at least more well-known), it does mean that there is a larger community for people to turn to in dealing with TBI recovery. Rosemary is a vanguard of that community and her experiences have been able to help people just like her so that they won't have to be "catapulted" blindly into caregiving like she was.
I thank you from the bottom of my heart for bringing these issues to those of us who backed into the realization that a loved one is suffering from a husband and I had absolutely NO IDEA what we were dealing with after his bicycle accident, it took months before we knew he had suffered a brain injury and you cannot get those days back and the confusion and the desertion of medical and mental support...well it is TRAGIC to the survivors as well as the caretakers and prolongs and hinders the health and progress. The military and sport industry and beginning to take notice but the ER's and the Healthcare industry needs to empower and provide support and arm the caretaker of what is ahead (pun intended) for the TBI accident victims. We thought our marriage was over....we thought we lost the ability to communicate with each other and my husband suffered from feelings of inferiority in his job...all could have been better understood with the proper guidance...and most of all, we could have addressed these issue long before they took the toll that they have taken...I hope that others will read your book and feel a sense of comfort that I felt when reading your experiences. Thank you again. Lisa Panella Herhuth
As a brain injury survivor I have Huge Love & Respect for You & for anyone else who is left to pick up the shattered mess that is BI reality! My accident was April 2, 2002 & I too was a cyclist hit by a car as it ran a stop sign. Those details don't really matter anymore but my earliest memories were of my neighbors taking care of me. My family could not show-up but these 'new' friends were there for me for years afterwards. Most Caregivers require the qualities of Saints because BI people, well, we can be so unkind & difficult as we struggle to reclaim our sanity. I admire your courage;) I'd love to send you my book, for free. I've just self-published my memoir called The Distracted Yogi:How I Reclaimed My BLISS After Brain Injury & Trauma ( Please contact me via or my blog Sincerely, (Michelle) MG Desgagne
That sounds like a truly challenging experience. I was fortunate in that I'd recently begun working at a senior center when more full-time caregiving fell into my lap. That training turned out to be invaluable to me. Thiago
This is so true! I'm so fortunate my husband even survived and is doing as well as he is. To most, they see no change in him with the exception of some memory loss. But for me it's totally different. His personality is different, his humor, his capacity to express emotion, almost every aspect of him in some way or another. I can no longer lie on his shoulder and feel "safe and secure" because that masculine sense is gone. I'm the stronger one now! I love him with all my heart, but if I met him for the first time now, most all the things that made me fall in love with him are gone. And there's no one to talk to about it! You see others with husbands in wheelchairs and you feel guilty because you know you have it so much easier. And yet, it's still so mentally and emotionally draining every day. People don't understand an invisible injury.
I'm a survivor of many years. My TBI was October 11th 1978. I wrote a small book called I didn't die because God wasn't finished with me yet. Its on Amazon. I have some tips from the patient's perspective of what for the caregivers to do or not do.