A Change of Mind: One Family’s Journey Through Brain Injury

A Change of Mind: One Family’s Journey Through Brain Injury

Janelle Breese Biagioni

Book on marital stress and adjustment for families when a spouse has a brain injury. Discusses emotional trauma for family, grieving, mourning, parenting, and caregiving after severe head trauma.

This book is included in the Family and Adult Tool Kit on Traumatic Brain Injury.

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Full Description

This is a very personal view of marriage and parenting by a wife with two young children as she was thrust into the complex and confusing world of brain injury.

Gerry Breese, a husband, father and constable in the Royal Canadian Mounted Police was injured in a motorcycle crash while on duty.

His wife traces the roller coaster of emotions, during her husband’s hospital stay and return home. She takes you into their home as they struggle to rebuild their relationship and life at home. The author shares the intimacy of her marriage and the emotional aftermath of brain injury. This book gives the reader a new appreciation of what survivors and families encounter day by day as they try to heal their lives and move forward.

Janelle’s description of the behavioral and cognitive changes that made it so difficult for her husband to make sense of the world expose the vulnerability, anxieties and fears that can accompany a brain injury. Her emotions as a spouse, and the reactions of their two young daughters, expose the conflicts that so many families experience.

Janelle has earned a Certificate in Death and Grief Studies at the Center for Loss and Life Transition in conjunction with Colorado State University. This book’s special section on grieving and mourning will be helpful for families as well as the professionals and friends who counsel and support them.

Details
Item ACHM
ISBN# 1-931117-19-5
Pages 176 pgs, 5½ x 8½ softcover
Year 2004

Authors

Janelle Breese Biagioni is a published author, national speaker and a long-standing advocate for families and survivors of brain injury. Her newest book is A Change of Mind by Lash and Associates Publishing/Training. Other work includes non-fiction books, articles and short stories on bereavement and coping strategies for families affected by catastrophic injury. Janelle offers workshops and presentations on Grief and Loss and has appeared on television and radio to promote her work.

Janelle is currently working on her next book, The Mourning Sun: Hope for Those Living with Loss. This inspiring book offers individuals and families in crisis a compelling testimony blended with practical, yet revolutionary guidance to empower them through the journey of grief.

Janelle resides with her family in Victoria, British Columbia. She is editor of Headline, a quarterly publication serving the brain injury community.

To learn more about Janelle as a speaker for seminars, workshops or conferences, please visit her website at www.soulwriter.com.

Contents

The Long Weekend
The Crash
My Worst Fear
Remembering Brian
Wait and See
The Touching Sound of Hello
I Don’t Want to See Daddy
From One Extreme to the Other
Homeward Bound
Happy Father’s Day
A Family Vacation
Goodbye to a Friend
Goodbye My Love
A Tribute
The Journey Ahead
Epilogue
A New Beginning
Hope Begins with a Heartbeat
Thoughts and Tips
To Grieve or Not to Grieve?
Five Common Myths about Grieving and Mourning   

Excerpts

Introduction

The siren screamed as metal twisted, scraping and gouging the rough pavement.

The overturned police bike spun in circles, imbedding streaks of blue and white paint into the asphalt road.

The loaded .38 revolver flew from the officer’s holster as his body hurled through the air.

The force of his feet smashing against the side of the car catapulted him over the roof.

His portable radio separated from the belt and broke through the car’s passenger window, viciously striking the 74-year-old woman driver.

As the officer’s body landed with a thud face down on the pavement, the base of his right thumb shattered and the layers of skin exposed beneath his short sleeves peeled away.

Skidding sideways, his forehead crashed against the cement curb cracking his protective helmet.

The weight of his body flipped him over, crunching his face into the stop sign, breaking his nose and splitting his lips and chin in half.

Blood gushed from his face as his limp body came to rest on his back on the sidewalk.

Pooling in his mouth, the blood congealed at the back of his throat.

He began to choke.

His airway closed, thrusting him into full cardiac arrest.

Suddenly, the world stopped. His world – my world...

Excerpts from A Change of Mind. Please do not copy.

As I maneuvered my car down the street in search of an open restaurant, the sun filtered through the windshield and a gentle breeze slipped through the open window. It had been raining for days. The change in weather brought about a much needed change in attitude for me. I couldn’t help feeling energetic and full of enthusiasm. Even my fears from the night before, when I lay in bed worrying whether Gerry would know me, didn’t seem so frightening. Somehow, he would come around and, when he did, everything would be okay. Or so I hoped!

There was a stool right beside him for me to sit on. Gently I called his name. There was no response. For that, I have to admit I was almost grateful. I was really afraid to face the possibility that he still might not know me. How would I tell him? Would it still matter? It wasn’t long before he lifted his head, resting it against the chair. Then his eyes opened. He looked at me, wordless, silent. He just stared. The swelling in his face and gums still gave him a toothless appearance. The striking red in his bloodshot eyes was a sharp contrast against the white plaster cast on his nose and cheeks.

The flatness in his eyes was haunting. It was almost a hateful look. Was that what he was feeling toward me – hate? Maybe he was angry with me, thinking I was responsible for putting him in the hospital? Whatever it was, it frightened me. My own husband looked like a perfect stranger.

In the early afternoon, the doctor stopped by to see him. Dr. Huang checked Gerry’s eyes and reflexes before listening to his chest and asking him questions. “Hi, Gerry? Do you know where you are?” There was no reply. “Do you remember being in an accident last weekend? This time Gerry shook his head no. The doctor continued. “Do you know who this is?” He pointed to me.

“Ye…a…h,” he said in a shallow tone.

“Who? Who is she, Gerry?” He didn’t reply.

“Is this your wife?” Gerry nodded his head, yes. I was so relieved. All my fears of him not knowing me were apparently unfounded.

“What’s her name? Can you say her name, Gerry?”

Gerry looked at me briefly, then said: “Bar...bar..ra.” I was shattered! He didn’t know my name. My husband of fourteen years - and now he didn’t even know me.

“Barbara. Is her name Barbara?”

“Ye…a…a…h.” The doctor studied Gerry’s chart intensely. It documented his family history including my name. “That correct? Is your real name Barbara?”

“No, it’s not.” I said, shaken.

“Middle name?”

“No, my middle name is Marie.”

“Mother’s name, then?”

“No, no - there is no Barbara. Not in either family. I don’t know any Barbara. To the best of my knowledge, neither does he.” I was exasperated. It just didn’t make any sense. The doctor didn’t comment. Instead he handed Gerry’s chart to the nurse and walked away.

A transformation was taking place with Gerry over the course of that day and it left me feeling quite exhausted. I was bouncing between relief, frustration and fear. Each time I made contact with Gerry, either verbally or physically, it was a guessing game how he would react. Sometimes he just looked at me in a state of confusion when I spoke. Other times it was with an expression of disgust.

It was always me who reached for his hand. He never reached for mine. I waited patiently for even the tiniest sensation of a squeeze in acknowledgment of my presence. But he offered nothing. It was so unlike him. Generally he was very sweet and affectionate. Probably the most hurtful thing was that he had no reaction whenever I left. It didn’t seem to matter to him when I left or when I came back.

Like wind changing course, so did his mood by nightfall. He was now aggressive and extremely vulgar. All of a sudden he was swearing at the nurses, the visitors walking by, and at me. It was humiliating to witness his poor and inappropriate behavior. There was no other way to describe it. I was embarrassed for me and for my family who were standing by and listening to this. And I was embarrassed for him. In all the years I’d known him, Gerry had been nothing less than a gentleman. Certainly, he enjoyed his fair share of locker room jokes, but he always drew a line in my presence. That was all gone now. I wanted to explain to people around us that he wasn’t like this normally. He just wasn’t himself.

The evening nurse took control, suggesting very strongly that we go for a leisurely dinner, and then go back to the motel for a good night’s rest. It sounded good, but it was difficult to leave. I felt so responsible for him. I tried to convince her that it wasn’t necessary for me to go. However, within minutes, Gerry’s behavior made my mind up for me.

Natalie and my mother were standing across the bed from me. I went to the foot of the bed and extended my arms on both sides of Gerry’s feet and leaned forward. He lay there with a silly grin on his face, the kind of grin when there’s an inside joke. I ignored the mischievous look. I explained that the nurse wanted me to leave early and asked how he felt about that. Instead of answering me, as I hoped he would, he lifted a foot and kicked me in the chest. I pretended not to notice and hoped no one else did either. It was silly not to move. I stayed in the same position. Seconds later, he kicked me again. Harder this time. Hard enough to hurt. Hard enough to push me backwards away from the bed.

“What are you doing, Honey? Why’d you kick me?” I asked, almost afraid of the answer. “I’m playing with those big tits!” he bellowed. Each word echoed loud and clear throughout the crowded unit. How humiliating! My head felt like a sponge. I didn’t know what to say, what to do, or even where to look. The expression on my face must have been worth a thousand words, because the nurse was quick to interject.

“This is a very normal thing when people have brain injuries. They display what we call disinhibitions. It means they act out with inappropriate behavior or responses. I know it’s hard for families to hear them talk this way, but it is not unusual, really. We are quite accustomed to it.”

Wow! For the first time, someone – and someone with training – was offering me information to help me understand where Gerry was coming from. No doubt, it would have been helpful had someone told me about disinhibitions prior to his waking up, so I could have been prepared. Instead, I had been battling embarrassment for his behavior, guilt for my feelings of embarrassment and humiliation. Oddly, I could handle strangers witnessing his bizarre behavior. We’d probably never cross paths again. But my family would always remember.

It was obvious right then and there that it was best I leave early. I knew I needed some time to think things through. I wasn’t certain where to begin. But I had to start facing reality, figuring out what I was going to do.

It wasn’t easy to figure anything out. My thoughts were consumed with what could happen the next day should his mood remain the same. My sister, Rebecca, and our friend Margaret Ashley were planning to bring our daughters to the hospital. Part of me rationalized that the sooner the girls saw their Dad the better. The other part of me wanted to protect them from being exposed to his crude behavior. Now I had mixed emotions. Would he be any different in the morning? And if he were, would he be worse, instead of better?

Both Myriah and Dale had expressed some fear over the telephone about seeing their Dad. It wasn’t easy for me to assuage those fears either. They intuitively knew more than they should. I couldn’t tell them what he was like, because that would really frighten them. Then again if I didn’t prepare them, it could be equally devastating.

I didn’t know for certain what to do, except to be at the hospital early enough the next day so I would be there before they arrived.

The next morning, I went to the Head Nurse for a first hand report hoping to hear anything different about his behavior than I already knew. She said Gerry had had a comfortable sleep with one exception. During the night, the nurse noticed a piece of blood stained gauze sticking out of his mouth. Upon examination, and to her horror, she found it was the surgical packing from inside his nose. Apparently, he had pulled it out, put it in his mouth and then gone back to sleep. It was amazing he hadn’t choked on it.

Gerry watched me speaking to the nurse. He didn’t call for me nor did he react when he saw me. Natalie, who is a younger, smaller version of me, was with me. We walked to the bed, smiling and saying “Good morning” with hopes of sparking some reaction from him. Natalie knew Gerry had told the doctor my name was Barbara, so she quizzed him...

* * * * * * * * * * * * * * * * * * * * * * * *

Changing the subject, I explained to her that our children were waiting outside to see their Dad. I suggested that perhaps a nurse would like to come and speak to them first. She agreed, and followed me out into the waiting area.

Both the girls were huddled together on a leather sofa. Their hands were tucked on their laps, their hair combed in exactly the same style, wearing matching outfits. The nurse assumed they were twins, a mistake often made by strangers. She took the next 20 minutes to explain in detail what the children would see when we took them into the unit. She described the equipment, how many patients were in the same area as their father, how Gerry looked, and even what he might say when he talked to them. In terms understandable to a child, she described how he had a big bruise on his brain and it would take time to heal.

I watched as our daughters sat, not moving a muscle, taking in every word the nurse said. Both girls shook their heads when asked if they had questions letting their silky bangs wisp gently across their foreheads. Myriah’s chin lowered and her eyes became misty when I said I would take her in first. When I took her by the hand, she pulled back and began to cry. “No! I don’t want to see Daddy! I’m scared!”

“Please, Myriah,” I pleaded. “I’ll be right beside you. It’s really important for you to see Daddy... he needs you.”

“No-o-o,” she sobbed.

Now what? I didn’t blame her, but I knew deep down after they saw him they would feel better.

“How about you, Dale? Do you want to go in to see Daddy first?” She began to cry too. The nurse tried again to ease their fears, confirming my thoughts that the quicker the girls saw their father and faced their fears, the better it would be. It took a while but eventually the girls agreed to go in, one at a time. Each time, as I rounded the corner with one of the girls, Gerry spoke to her right away and called her by name. It was shocking to me that he was able to retrieve this accurate information from his brain, when so many things, like my own name, had consistently been incorrect over the past 48 hours. However, it was heartwarming to see some sparkle in his eyes when he recognized his children. His response immediately put the girls at ease.

In a way, I wasn’t surprised that the information about his babies surfaced so strongly. He was an excellent father, participating from their births in their day-to-day care and doing his fair share of night feedings and diaper changes. As the girls grew, he remained involved in every aspect of their lives, from Girl Guide Camp to walking the creek beds with them so they’d catch a glimpse of the Kokanee fish going upstream in spawning season. His children meant everything to him, and I knew they’d be his inspiration to fight to regain control of his life.

It was after supper before the girls first saw Gerry’s unusual behavior. The three of us had gone into the ICU to say goodnight. I hoped by going in together we would stir some family nostalgia in him. He was once again sitting in the large recliner. His eyes were closed, but he obviously wasn’t sleeping too soundly as he opened them when we came closer. Right away he spoke in the same exaggerated British accent as he had earlier that day.

“Hell-lo, hell-lo, hell-lo!!!” Myriah and Dale were surprised and began to giggle. I didn’t want to draw any more attention to this behavior than necessary, so I gave the girls a simple explanation of how he seemed partial to this accent. We should act as though it were normal. I pulled up three chairs for us, forming a semicircle in front of him so he could see us.

“Honey, isn’t it nice the girls came from Penticton to see us?” I asked, hoping to start a conversation with him and the kids.

He raised his eyebrows, and lifted one hand while speaking again in a British accent. “Penticton! Well! Snotty! Snotty! Snotty!”

Myriah and Dale covered their mouths and snickered.

“Well, how did you ride?” he continued.

“Margaret Ashley, one of our friends gave them a ride. Do you remember Margaret, Gerry?” I asked, as the girls sat staring at him.

“Oh, Ma-a-ar-ga-ret! Well! I never…!”

The girls suddenly stopped giggling. He was getting louder and louder. The other visitors were beginning to stare. I took a hand from each of the girls, holding them tightly in my lap.

“Yes. I have a pool and a hot tub at the motel so the girls came up to spend the night with me.” I smiled at the kids, trying to imply this wasn’t so bad.

Gerry’s eyes flashed open as wide as the swelling allowed. Anger seethed from them. He tried to grab at me as he yelled.

"A pool! And a hot tub! Fine! Pack your things and get out of my face!" He looked away from us and moved his lips as if he were muttering under his breath. This cut the girls to the bone. Hurt washed over their little faces. This wasn't their Dad! What was happening? Myriah's lower lip quivered as she bit down on it. Dale grabbed my arm, squeezing her cheek against my shoulder. I didn’t know what to say. Gerry realized we weren’t leaving.

"Go on! Get out! Get out of my FACE!!!!"

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