By Janet M. Cromer

This book chronicles the seven year journey Janet shared with her husband after a massive heart attack and cardiac arrest left Alan with a severe anoxic brain injury. In an instant, the brilliant physics professor and prolific author lost his abilities to read, write, walk, talk, think, and remember. With intensive rehabilitation and ongoing cognitive rehab with janet at home, Alan did regain his essential abilities to varying degrees. 

In a memoir brimming with information, Janet describes how the couple composed a new life with meaning and gusto. While a full recovery was not possible, Alan made an equally valuable “Best Choice Recovery” by making the most of every opportunity to learn, contributing to others, and finding new ways to enjoy life.

The story is told from both Alan’s perspective, and Janet’s perspective as his caregiver. She honestly explores the changes in their relationship, ambiguous  loss and grief, caregiver stress, and the process of empowerment and reinvention. The challenges faced and coping strategies shared are relevant to families of adult survivors of all types of brain injury.

About the Author:

Janet M. Cromer is a psychiatric RN, licensed psychotherapist, support group facilitator, educator, and advocate. She speaks widely at conferences, hospitals, support groups, and community events. 

As a freelance writer, Janet specializes in feature articles for publications serving healthcare professionals, patients, and the public. The American Medical Writers Association/NE Chapter awarded Janet a Solimene Award for Excellence in Medical Writing in 2006 and 2008.

Janet also writes personal essays and poetry. As a Registered Art Therapist (ATR), she encourages people to get in touch with their creativity in any form or media. Creativity is much more than an artistic process and product. Creativity is the energy, goodwill, and attitude we bring to daily life.

You may  contact Janet at janetcromer2@gmail.com or visit her web site at http://janetcromer.com/

Professor Cromer Learns to Read: A Couple’s New Life after Brain Injury

By Janet M. Cromer

Professor Cromer Learns to Read: A Couple’s New Life after Brain Injury is the recipient of a Solimene Award for Excellence in Medical Communication and Neal Duane Award of Distinction from the American Medical Writers Association – NE Chapter.

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By Irene Young

Challenges and rewards of caregiving

Most of us have had the blessing to watch our children take their first steps, to hear their first words, to witness their first everything and to embrace them as they overcome the obstacles in their life.  Imagine if you would that it wasn’t your child, but your husband, your sister, or someone who is very close to your heart. I have had a recent experience that most wives don’t usually get. I have been blessed for the last four years to watch my husband not only live, but overcome life’s obstacles after his traumatic brain injury. Caring for a loved one who has had a traumatic brain injury (TBI) is not glamorous, by any means. But by setting goals and making a schedule, you and your TBI loved one will be well rewarded. 

As the caregiver, you will be responsible for not just goal setting, but you will be essentially the cheerleader for your loved one.  So it is extremely important to train yourself to be happy and positive, even when you don’t want to be. And there will be times when you don’t want to be. The caregiver needs to give words of encouragement, such as “great job!” or “you were very close let’s try that again!”

Recovery from a brain injury

No one really knows if, when or even how much an individual will recover from a brain injury, but setting simple goals can be beneficial to the survivor and the family. Their goals need to be realistic. Start small and work your way up. If your loved one can only hold a spoon and doesn’t know what to do next, set a goal to work on lifting the spoon to his or her mouth. Keep a journal and maybe video tape your loved one working on goals, not to critique it or tell them what they did wrong, but to replay it when the goal is accomplished. When my husband used to say, “I’ll never be able to do that!” I used to read from the journal I kept that reminded him that at one time he was not able to eat on his own, but now he can.

Don’t expect too much at one time. 

This will only add to both your loved one’s frustrations as well as your own. It may take a little longer than expected, but stick with the same repetitive goals. Remember your loved one has to retrain his or her mind to do things that you already know. I can remember expecting my husband to be able to do a simple thing like hug me, but even a simple hug needed to be retaught to my husband. It took him a whole year to learn how to wrap his arms around me and my daughter and gently squeeze. But when this blessing finally happened, it was like a fourth of July celebration at our house with fireworks.

Know when “Enough is enough.”

I cannot tell you how important this is. Sure go ahead and push your loved one, but watch for signs that signal he or she has had enough, such as getting angry, throwing things, or irritability. These are pretty good signs that your loved one needs a break.  Keep in mind that their attention span may not be as long as it used to be. As  the caregiver, try to think of your adult loved one as a child; I know it’s hard, but it is sometimes easier to make goals and set time limits if you keep this in mind.

Get organized!

As the caregiver you also need goals – this includes goals on becoming organized. This was very hard for me to learn, but I soon realized that people with a TBI need structure and don’t usually like change, so I had to put myself on a schedule. If you have small children or if you want a life after TBI, I assure you that you will need a schedule as well.

Set time aside for your TBI survivor, time for your children and time for yourself – all of these people are very important.

Set time aside – for yourself and others

I physically wrote the time I scheduled for me from 5 a.m. to 7 a.m. in a date book. It was my time to paint my nails, read a book, spend time with God and anything else that was just for “me”. You are not being selfish when you schedule things just for yourself. On the contrary, you are taking care of yourself so that you can be physically and mentally able to take care of your family.

Then, I would have time set aside for my daughter to play a game, color, or just sit and talk with her. While my daughter was at school, it was time for my husband: getting him ready for the day, bathing, dressing, feeding and helping him with his physical, occupational, and speech therapies.

Once I got good at these tasks, I found that even though I had scheduled time for them, it didn’t take me nearly as much time as I had originally scheduled. This gave me a little bit of time in between for a much needed rest.

Being a caregiver is all worth it

Yes, caring for a loved one with a traumatic brain injury can be very exhausting at times, but the challenges never outweigh the rewards and blessings for both the caregiver and their loved one. Watching your loved one take their first steps, hearing their first words, and witnessing their first everything are beautiful memories that will be remembered for a lifetime.

Be patient, goals are easy to set, but not as easy to attain, it has taken my husband four years to be able to take six steps without the help of anyone. He can now bathe himself on his own, and do all of his personal hygiene. It may take him two hours, but the fact is that he does it without any help. Questions that used to take him two or three days to answer now take only one day. His greatest goal he says is being able to tell his daughter how proud he is of her achievements, which he does on a regular basis.  

 Recommended reading

Life Changes: When a spouse or partner has a brain injury

 By Janelle Breese Biagioni and Marilyn Lash, M.S.W.

Information and tips to help spouses cope with feelings of loss and adjust to changes in roles when a husband or wife has a traumatic brain injury or blast injury. Explains importance of self-care and setting up a support system to cope with and relieve stress in families after TBI.

Helping Sons and Daughters: When a parent has a brain injury

By Marilyn Lash, M.S.W. and Janelle Breese Biagioni

Information on emotions and reactions of children when a parent has a traumatic brain injury (TBI).

Managing Care and Services after Brain Injury: A workbook for families and caregivers 

By Don Hood, B.A., Marilyn Lash, M.S.W., Ann Glang, Ph.D., and Bonnie Todis, Ph.D.

 by Barbara Stahura

An injury to the brain is unlike any other injury 

In my favorite photo of us, we’re astride Ken’s BMW motorcycle in our Tucson driveway. Ken is laughing at the camera as I, sitting behind him with arms clasped around his waist, kiss his ear. We wore none of our usual protective equipment—full-face helmets, boots, jackets, gloves—because we had jumped on the bike strictly for the photo. Months later, Ken was wearing all his gear when he took his other motorcycle, a Ducati sport bike, to run some errands. But when a white sedan turned suddenly in front of him, there was nothing he or his equipment could do to prevent what happened next. Ken hit the passenger side near the back wheel; helmet striking steel, face smashing into helmet, brain slamming into skull. He crashed to the asphalt. The sedan disappeared.

An injury to the brain is unlike any other. Along with physical functions, the brain controls awareness, personality, temperament, and cognitive processes like memory—all those things that commingle to form a “self.” And while that self does not necessarily reside in the brain, the brain is the part of us that animates it. So a traumatic brain injury can kidnap the dear self of someone you love, dragging him far from shore as a riptide does a swimmer, sometimes beyond rescue, even though in reality he is holding your hand or smiling at you across the dinner table.

The shock of seeing him in the hospital and hearing the words “brain injury”

The day of the accident, exactly nine months after our wedding, Ken left around noon and had planned be home in a couple of hours. Instead, I found myself at the University of Arizona Medical Center’s ICU around 7 p.m., staggered by the sight of my husband. There was a ventilator tube in his mouth; a cervical collar around his neck; a stitched cut above his left eyebrow; left eye purple and swollen shut, right eye nearly so; nostrils filled with crusted blood; broken right hand captured in a sling; left hand tethered to the bed rail. Naked under a single sheet and his face streaked with dirt, Ken moaned and tossed in delirium.

A CT scan showed two minimal contusions on Ken’s brain. The neurologists told me worse injuries invisible to imaging machines were likely. The brain floats within the skull, and if the head’s momentum stops suddenly, as Ken’s did when it came to an instant halt against the car, the brain rebounds within its bony home in a motion called coup contrecoup. Neurons are sheared off: Millions of connections in that tiny, internal universe can, like exploding stars, blink out of existence in an instant.

My husband now speaks but can not communicate 

That Ken had suffered a traumatic brain injury (TBI) became apparent when he could talk again, four or five days after the collision. Much of his speech consisted of parroting words in a sing-song voice. After developing aspiration pneumonia, he tried to cough but couldn’t cough deeply enough for relief. Smiling at him and stroking his forehead, I said, “Bummer.” He sang back, “Bummer, bummer, bummer,” much as a toddler would.

Next, he began repeating nonsense phrases. The first was, “Happiness is, happiness is,” in a gentle rhythm. I added, “Happiness is a warm puppy,” which he chanted for a while and gradually transformed to “Happiness is a warm country.” But as Ken began to speak in complete sentences, I grew more alarmed.

“I have to rewire your circuitry so I can manage you better,” he told me in all delusional sincerity. He claimed his staid, seventy-seven-year-old parents were members of a steel drum band; no, wait, a plastic drum band. He insisted he had to get up and care for his patients (he’s a software engineer) and that Scott, his chiropractor, repaired his motorcycles. One night, when he couldn’t even sit up without help, he somehow clambered over the bed rail, wandered down the hall, and fell, hitting his head. Fortunately, he incurred no further injury. The nurse who called me said he kept repeating, “I have to find the motion. My wife and I have to find the motion.” He didn’t know where he was or what was happening. Even worse, he didn’t know that he didn’t know—a very bad sign.

After this incident, Ken was placed in a Vail bed, a mesh-sided, enclosed bed that zips from the outside. Much better than putting him in restraints, the nurse told me.

Ken’s short-term memory also had been damaged. He recognized everyone who came to visit but for weeks could not recall that anyone but me ever had. His speech therapist hung signs in his room as memory aids: “I was in a motorcycle vs. car accident on December 29″ and “My wife’s name is Barbara.” She also started a memory book for him, to which I added photos of our wedding, his kids, our house, and our cat, along with affirmations proclaiming good health and normal life.

During the first few weeks, even though Ken carried on long—if sometimes weird and oddly chatty—conversations, he never really engaged with anyone. He spoke animatedly, but his gaze was distant, unconnected. Although physically in the room, he was not present; he existed in some inward place, unable to transcend the damage to his frontal lobes.

He is s different person – is this my husband?  What will it be like to live with a person with a brain injury?

His rehab team warned me that impulse control is often a casualty of TBI, and Ken was no exception. Still weak and in danger of falling, he moved too quickly for safety. He gobbled his food. I became a nag, perhaps too protective but terrified of another injury. I reminded him again and again to slow down, be careful. Stubbornly, he refused, brushing away my concern like a pesky fly. Once, I cried in frustration, fearful that he would choke on huge forkfuls of dinner. He simply looked past me with distant eyes and continued bolting his food.

A month after the accident, Ken developed a pulmonary embolism and was transferred from rehab to an acute care hospital. One morning, he called me from there. “I don’t know where I am,” he whispered. “I think I’ve been kidnapped by foreign nationals.” I stood in our kitchen, phone to my ear, stunned. Just yesterday, he had sounded so normal again. Where was the man who had looked so intensely into my eyes as he said, “I do”? Smart, articulate, an enthusiastic reader, an excellent computer programmer and woodworker, the real Ken had disappeared, replaced by someone who looked just like him but was missing essential ingredients. Should I have applied for his Social Security disability, as his case manager had advised? Would I forever be his caregiver, exhausted, frightened, and missing him?

If I could only see inside his brain

I wanted more than anything to look inside Ken’s brain, to see what the scanning machines could not, to find his lost self among the blasted neurons and bring him home. I researched TBI on the Internet, read books about it, and found many chilling and many encouraging stories about survivors. I pestered Ken’s doctors and therapists with questions—Would Ken’s brain heal? How much? When? —but of course, no one could provide the answers. There was nothing to do but move through the days.

When a reason for hope appeared, I clung to it—the first time Ken hugged me, remembered our phone number and called me at home, recalled a visit from neighbors the night before. And when hope lagged, I read reminders I’d hung around our house: “Relentlessly Optimistic.”

Two days before his homecoming, my husband made an omelet—perfect and golden—just as he used to make for us every Sunday. All by himself. It was part of his occupational therapy. I took photos, the last one showing Ken standing in the rehab kitchen, proudly displaying his creation. We ate it for lunch. Later that day, he couldn’t remember the word “omelet.”

Nine months post-accident, Ken still fights headaches and fatigue, and fears he’ll always be wobbly on his feet. His memory is better, although the right word often eludes him, but he still wrestles with once-easy tasks, thanks to damaged cognitive functions. He has sold his two remaining motorcycles, returned to work, and vows he won’t abandon himself or me by giving up. Nearly released from the riptide, my husband, resolute and a little scared, struggles to free himself for good. When we vacationed along the Pacific Ocean, we walked the beach every day. I watched Ken cheering the surfers cresting their waves, and I silently cheered him, praying his determination would be enough to return him all the way to shore.

This essay originally appeared in the Jan.-Feb. 2005 issue of Science & Spirit

See more articles by Barbara Stahura about returning warfighters with TBI:

http://www.barbarastahura.com/SoldiersBrainInjury.pdf

http://www.barbarastahura.com/silentinjurycomeshome.html

And about her experience with her husband, Ken:

http://www.newsweek.com/id/37348

Recommended reading

It’s After Brain Injury: Telling Your Story

By Barbara Stahura and Susan Schuster, M.A., CCC-SLP

This workbook guides survivors of brain injury and blast injury through the powerful healing experience of telling their own stories with simple journaling techniques. By writing short journal entries, survivors explore the challenges, losses, changes, emotions, adjustments, stresses, and milestones as they rebuild their lives.