Spouse Coma Nightmare – Severe Brain Injury Vigil

My Spouse Coma Nightmare

There is a memory: A summer evening, warm and humid. It has been so hot even the bugs have fled. I sit on the porch, dressed in white cotton. Painting stools the same white. Humming to myself, content. The light almost too dim to see by. John comes outside. He’s given the kids dinner and they’re cleaning up. I can tell he’s restless. He’s always restless.

He walks to the end of the walk and leans against the post, staring at the lights in the distance. It’s a beautiful night and I am happy. He says very quietly “I hate this place.” I know its not this place exactly but any place that has roots. So I say “Why don’t you go for a ride?” He replies its no fun with me because he can’t go fast. He wants to go fast. I tell him to go, without me. And he grumps a little, but finally pretends to have been talked into it, he gets the motorcycle out and roars off across the grass, his engine revving when he turns onto the road.

From such a random decision, so easy to look back and regret, my “spouse coma nightmare” begins.

I clean my brushes slowly, listening suddenly. Intent. There is a mist in the air now, the first edge of the rain and mist rises in the marsh, hovers in the road. I sit transfixed, frozen, listening. It is so quiet I can hear him all the way down our road, and silence for awhile. And then the faint sound from the highway, and then silence. And time seems to gel and ferment into long sticky moments. I am like a statue, every fiber listening.

Then the siren, a police car. I think “He got a ticket!” And then the second siren. And then my heart pounding, the feeling running from my arms and face. I sit for unmeasurable moments, waiting for the sound of him returning.

Then Don, my step son, opens the front door and tells me I have a phone call. And I know. From the hospital he adds. The kids didn’t even know he’d left, but they’re not surprised. Everything has turned dull and flat. I pick up the phone and a voice tells me my husband has been in an accident and they need to ask me some questions. I ask what’s happened, not wanting to ask the real question. She says she needs some information and then she’ll turn me over to the emergency room. I can’t bring myself to ask the question, I just numbly answer all of her questions with all the right numbers. Everything takes on an air of unreality and I am so trapped in that bright moment that I can scarcely breathe.

Finally the emergency room comes on and a nurse asks if I have someone who will drive me. I still can’t ask. I think I ask if he’s alright and again she asks if I have someone to drive me. I answer yes, there is someone who I can call to drive me, but it will take a few minutes. And I know that I am incapable of driving. So I call Jane and she says it will take her awhile to get there and I use the time to give the kids instructions. I give them numbers to call if I have to call home and have them call family. I tell them I’ll call as soon as I find out anything. They are quiet and solemn.

Jane arrives and I tell her what I know and then I cry. She knows we have trouble and I tell her I love him and she says of course you do. The drive takes so long, I wish I had driven, but we get there safely.

I walk into the emergency room and my “spouse coma nightmare” begins, even though he is still awake. I tell them who I am, and then someone points the way and I walk into the room. The doctor is there and nurses and John is vomiting into a pan. I stand at the foot of the bed and the doctor asks him if he knows who I am. He says “Yes, that’s my wife.” The doctor asks his name and he answers. I am so relieved. He asks his date of birth and he answers something like 1/13/47, and I say “No, it’s 7/7/54”. The doctor leaves and I go to John’s side and touch his hands, they are scraped and swollen. I say hi and smile and he smiles back, his eyes blackening underneath. He puckers his lips and says “I love you.” The nurses talk to me but I don’t remember what they said…some joke about what he had for dinner. Someone asks me if I want to sit down. They ask me several times and I shake my head no. John closes his eyes and seems to be asleep. I ask if he’s broken anything and they say they have to send him for X-Rays. They wheel him out and someone hands me his watch and wallet and a bag with his clothes. I go out into the hallway to wait.

When he comes back, there are no broken bones. Someone explains he has to be transported to Milwaukee, so they have to put a tube in his throat on the ground before he leaves. They say it is unpleasant and I have to wait in the hall. So I stand across from the open door, leaning against the wall, a nurse asks if I am alright. I say I am fine, don’t I look fine? I listen as they start to insert the tube. John begins to moan and cry out and then whimper. Someone asks me to wait down the hall. So I find Jane and sit with her.

The doctor appears. He explains that John has suffered severe trauma to his head. They are flying him out on Flight For Life. But it was very possible he would not live until he arrived there. I ask if I can go with him and he says no I would have to drive, but it would be better to go in the morning because I wouldn’t be able to see him until then anyway. He instructs me on how to reach the ICU and tells me they will call me at home upon his arrival.

I go back to see him and he has changed. His eyes are swollen and black and blue, his lips are puffed and his entire face enlarged. His nose is spreading and he is pale. I think I may never see him alive again. I am not allowed near, he is getting critical. I walk with him and the orderlies and nurses down to the door overlooking the landing pad and watch the helicopter arrive and open up like a cocoon, festooned with tiny flashing lights. They load him in, a scurry of activity, and then rise into the sky. I tell one of the nurses that John would have loved flying in a helicopter, but not like this.

It must have been a long time there, because I managed to call home and relatives called back. John’s dad saying he’d received a call I was in the hospital and I told him it was John and he said to keep him posted. And at some point Jane and I snuck out for a cigarette and I don’t know what we said. And it seemed like only moments we were there and much of it is a blur.

We drove to my house and Jane came in for some coffee and sat with me while I waited for the call. She told me later she stayed in case he died, so I wouldn’t be alone. And it was the best thing a friend could do. The call didn’t come, so I called and he was in surgery and it looked good and I could probably see him by late morning.

I asked Jane if she could drive me and she couldn’t, so I called my friend, Sharon. Her husband picked me up and took me to Fond du Lac and Sharon took me from there. You don’t know what it is like. The traffic was just a series of blurs that made no sense, I could not have driven. Cars startled me when they appeared beside us. I didn’t cry, I was so numb, in shock.

The hospital was a maze. I had to go to one floor to wait while they called to allow me access. Sharon went with me, we buzzed at the big metal doors and they opened to let us in. I recognized him immediately. He was in the first bed on the left. Tubes everywhere, his legs thrashing, his face so swollen it was grotesque. His eyes were inches long slits over tennis ball size orbs, his lips were stretched and swollen, his nose so distorted, it appeared broken. His hands were enormous, painful looking. His ears were buried in the swelling of his head surrounded by green bruises. He kicked and thrashed and moaned and cried. I covered him up. His hands were tied and his legs bound in elastic. Monitors beeped and flashed.

I took his hand and talked to him, my voice light and cheerful. Be positive, be strong, they had cautioned. Inside I was terrified. It was too horrible. I bent over and kissed his cheek. He became more agitated and the nurse said I would have to go. At this point too much stimulation increased the agitation. I saw him on and off over the next two days. I made all the phone calls, checked his insurance, called his boss, left messages with everyone he knew. Met with doctors, nurses, social workers. Finally went home exhausted to take care of the kids.

They greeted me with barely a nod, glued to the TV. Their response was eerie. I poured a glass of wine, ready to tumble into bed, when the phone rang. The MRI I had been asking about for hours that evening had finally been read and he was hemorrhaging. They had to do surgery. I said I’d be right there. They said there was no reason, but I said I would be there. I realized as soon as I got off the phone that the one glass of wine had wiped out the last of my reserves so I called Sharon and she actually drove me to Milwaukee.

The waiting part of the “spouse coma nightmare” begins.

We spent a scary night in the waiting room with inmates from the drug and alcohol rehab at the state hospital wandering in and out. At one point Sharon screamed after awakening to a doctor trying to tuck a pillow under her head. Early in the morning a doctor came to brief us. He told me that they had removed a golf ball- sized portion of John’s temporal lobe, all had gone well.

Was it then or later he told me that I had to believe that he would recover, but that the person I knew had died in that accident. A new one would emerge. He gave me the literature and I spent hours reading and rereading. I learned the coma scale and seizure rankings and how families were affected by this secret injury. I read everything I could, asking questions at the meetings where I was briefed in all aspects of his care. I was prepared by doctors to make decisions for coma care, social workers gave me paperwork that took months to process, I sat with physical therapists who explained the strange devices which kneaded his muscles, I watched tubes changed, the horrible pinching as they strove to wake him from his coma, I watched the monitors because they were his only way to respond. And in quiet moments in the middle of the night. I crept in and fell asleep in a chair next to the bed, comforted by the closeness. Those were tender, peaceful moments.

There were terrible scenes, that haunt me still. A boy died, he had broken his neck. I had shared the waiting room with his family. Their grief was awful. The man in the next bed was aroused only to spit up chunks of blood and gore that I tried not to see. The waiting room was full of tragedy also. Families who sat and chatted and joked, we laughed too much, we had to. As long as we could laugh, there was hope. And John’s family, showing up a week after and being angry with me. I had begged them to come earlier, but they didn’t believe the seriousness of it, they never believed he’d had surgery and they told me I could leave, they were there to take over. And then they tried to get him moved to another hospital. And they tried to get Don.

The Value of Friends as You Wait

But my friends were there and they supported me through it all. I got stronger and tougher. I did what I had to do, seldom stopping to sleep or eat, just keeping busy. I went back to work and drove to Milwaukee every night.

I took the kids to see him a week or so after the accident. They were in denial and acting so unconcerned. It was time to see him. He had improved in appearance immensely. Even so, Don burst into tears upon seeing him and Mary was numb with shock. When they saw him again the next day, however, they noted the improvements and began talking to him.

I started noticing changes in his monitors when we spoke to him. But the nurses didn’t give it much credence. It had been three weeks and no response to pain or stimulation. Then he started squeezing my hand, still no-one listened. Then one day he opened one eye and looked at me intently. I spoke to him and he puckered his lips. I was so excited. He couldn’t get the other eye open for a long time. I started untying his hands, watching carefully to make sure he didn’t pull his tubes out. His tubes hurt, he was always grabbing for them.

Remembering the ICU

They say no-one ever remembers being in ICU. Its a lie, I remember, it is central to my “spouse coma nightmare.” I remember his trach tube coming loose and him gasping while I rang frantically for a nurse, I remember his tears and cries. I remember the nurses with that welcome cup of coffee late at night. I remember the pictures taped to his equipment from the kids and the cards tucked into the drawer for later reading. I remember the drawn curtains and the glimpses of the humanity behind them. I remember lots of pain.

And most of all, I remember the farewells as he left ICU for good.

Memories become more indistinct now. He only spent a few days in the regular ward. The buffer zones between his family and me had to be reestablished. But life had a regularity to it. Visiting hours were more defined and restrictive. The nurses were always new faces, occasionally friendly ones.

He went through surgery to have the catheter to his heart removed. The stitches had been removed from his scalp, leaving a large dented space that began at his left temple and covered the side of his head. He began physical therapy out of bed, each time walking a little more, sitting up a little longer. He began eating solid food, sitting strapped to a wheelchair. He sometimes spoke, but it was disjointed and garbled. One day I commented on the music sifting over the speakers, some Lionel Ritchie song converted to muzak. I said “Nice song”. He replied “Nice music.” Not much, but it chilled me a little. He hated the song. And then the PTs would come for him and I would sit and think and wait.

Arrangements had been made to transport him to Mercy Hospital in Oshkosh. He was rapidly stabilizing, though still fairly non responsive. He was relearning some basics. The ambulance was scheduled, tubes were reinstalled in case of emergency, and he was transported with no difficulty.

The Rehabilitation Unit was small. There were only a few patients; stroke victims mostly, another brain injury case. The nurses were helpful and friendly. I usually came after regular visiting hours, riding the staff elevator to bypass the other departments.

His condition didn’t change much the first few days. It seemed he was always sleeping when I came. I’d tell him about my day and what the kids were doing if they weren’t with me, I’d talk about work, always using names, specifics. Slowly he began to emerge.

He began talking more, still fuzzy, forgetting the names of things, describing them rather. He complained of the catheter, he said the nurses were mean. I started taking him for walks in a wheelchair, at first in the ward and later throughout the hospital. He was often angry at me for taking him where there were people. He felt that they were staring at him. He had gotten a glimpse of himself in the mirror and was convinced he was ugly. But it was recommended therapy and we continued our walks. I took time off work to go to physical, occupational and speech therapy with him.

He tired quickly at each. In physical therapy I helped him as he walked with the aid of bars and stretched and lifted small weights. In occupational therapy I handed him bolts to twist onto screws. In speech therapy I listened as he consistently described objects that he had forgotten the names to. He used more difficult words to name simple things. He became very frustrated, often shaking his head and saying ” I don’t know”. Speech therapy embarrassed him too. He didn’t like me being there as he fumbled for words to describe a comb or a fork.

He told me he had talked to the other brain-injured man and they had some sort of rapport, some understanding of each other. I had dinner with them often, going to the cafeteria to bring back a tray of food, urging him to eat. Sometimes Don came and sat in the lounge playing games and watching TV. Mary had left with her grandmother who had come for a few days while John was in Froedtert.

We spent July Fourth in the hospital, at first straining for a peek at the fireworks through a tiny screened window and then begging to be allowed to take him outside for a few minutes with promises to return if it became overwhelming. We found a nice quiet place in the grass. John said people were staring and I said they weren’t. I sat on the arm of the wheelchair with his scar hidden against my side until he complained of fatigue and we returned him to the hospital.

It was shortly after that he entered another stage of recovery, the desire to return home. He was ambulatory now and wore a band on his wrist which set off an alarm anytime he went through the boundary doorways. He looked forward to our walks then, as he was allowed to go greater distances when accompanied by me. He soon learned that placing a hand over the band would allow him to bypass the alarms and he was childishly mischievous about it.

It was then that we began walking with the physical therapist outdoors, learning to navigate rougher terrain, grass and curbs and gravel. I walked with his arm held in mine, as you would lead a blind man, offering guidance. He had lost the sight in one eye and still had a tremendous amount of blood clouding his good eye. He could see out of the side but not straight ahead. The therapist walked behind giving quiet directions, praising the improvements.

The hemorrhaging had also damaged his sense of smell so that food was tasteless to him. He had lost over thirty pounds and we struggled to get him to eat. Don and I often stopped to pick up some special request for him, but after one bite he would shake his head and say he still couldn’t taste anything. I think he thought that eventually he would find something with a flavor. But it was probable that the olfactory nerves would regenerate with time.

Unlike the optical nerves. The nerve to his left eye had been completely severed and damaged in the process. The nerve to his right eye had thickened causing some permanent loss of sight. The eye doctor said surgery could clear his vision, but there were risks, and it might be better to wait and see if it would clear on its own.

He also suffered from disinhibition. He made inappropriate sexual statements to the nurses, his son. He told a visiting friend about her husband’s affair. He also confabulated stories, the story of his accident became more outrageous with every telling as he installed bits and pieces into the truth. He began agreeing with everyone as a defense for his confusion.

Always cheerful with visitors, glum and moody with Don and I. He told everyone he’d be back to work in a couple of weeks, the doctors had told him he was all better. Some people believed him, some people cried, some people offered hopeful words.

Then the big fight to have him home for the weekend. Arguments with doctors, classes with nurses about seizures and nutrition. And finally twenty four hours at home.

He walked through the house, and stood at the window. He went for a walk in the yard, I sent Don out to follow him. He asked for the car keys and became angry at the notion that he couldn’t drive. He sat down to a meal of all of his favorite things, shaking his head each time, looking at me calmly and saying “I can’t taste it”. Sitting down to watch TV and saying “I can’t see it.” Falling asleep as I sat and watched and then the seizure rippling through his body in waves as his eyes fluttered and becoming angry at my concern.

We relaxed that weekend, not having to go to the hospital. The look of surprise on our faces as he emerged from the bathroom with his beard trimmed, fresh shaven, asking if he’d gotten it even. We returned him to the hospital very sadly. I informed the nurse about the seizure, and that was a mistake.

He became angry, feeling I’d betrayed him. For he was a private pilot and pilots can’t fly if they’ve had a seizure. He never really trusted me again. Tests could find no evidence that he’d had a seizure and that did alot to undermine my confidence. A few months later he was admitted to the hospital after suffering a grand mal seizure and was placed on anti-seizure medication after that.

The battle with his family continued, with hospital staff separating us as much as possible. We set up visitation schedules that became an ugly point of contention. Too many ugly scenes ensued, too many the threats and accusations. Every step of the way was a legal fight to preserve my guardianship and decision making. Always in my mind was the promise I had made to him during some deep talk about life, that I would never send him to a nursing home.

His time at Mercy was coming to an end and alternative care had to be found. I worked with the social worker, contacting Rehab facilities. Again and again he was rejected, not severe enough they said. And then he was accepted, but the insurance company balked. So I made arrangements to pay cash for the first month and the facility backed out. So it was a nursing home or home care. His family berated me for not paying for a nursing home, I asked for their assistance, but they turned me down. So I met with social workers and nurses and we devised a plan that would allow me to take him home.

If I didn’t meet their conditions they told me, I would be forced to place him in a nursing home, and our arguments were long and heated. He would come home with a full-time nursing assistant to watch him while I was at work. The insurance company paid for nursing care but not for aides. I asked why they couldn’t recommend a nurse and they refused. I said I could quit my job and stay home and they refused that too. They made arrangements for him to stay two days a week at Waushara Industries, a sheltered workshop for severely handicapped people. I fought that one the hardest.. he would hate me for sending him there. They promised me respite care, an attempt to get some county aid, affordable aides who because he needed minimal care would be able to take care of the home as well. So his things were packed and we went home.

It was a hectic time. The aides were hired, two of them alternating days. I paid $5.50 an hour plus .25¢ a mile from their doorstep. Unfortunately, both of them lived a considerable distance away. Add that to the fact that they had to drive him to therapy in Berlin and Ripon; they made more than I did.

And despite Social Services assurances that because their duties caring for John were minimal, and they would be able to do light housecleaning even ” throw in a load of laundry or two”, it took a major confrontation to convince them that watching TV was not the entire job description.

I had been having trouble at work for some time with the number of phone calls I received. My boss had started screening them shortly after John went to Mercy. They disrupted my work constantly and often required that I leave to attend to whatever details hospital administration or social services had to have dealt with. The saddest victim in this was John, who had spent hours on the phone since he had been able to speak. The first few times he called were exciting and very welcome, but when the calls began to endanger my job, they were screened like all the rest. How could he know that our customers all over the country asked about him and sent their best wishes?

My average day began at 7 a.m.. I got up, grabbed a cup of coffee, tried to get dressed. John accompanied me every moment. He complained about the nurses, his family, me, my job. I tried to make him breakfast, but he wasn’t interested. The nurse would come and we’d discuss arrangements for the day, ideas, problems of the day before…then I’d leave for work, (only 1/2 an hour late today), with John reminding me how I’d lose my job if I continued to be late.

I’d go to work and the phone calls would start and I could hear the irritation in John’s voice as he tried to explain I was working. And then it would be the aide, John wanted to deep fry the salmon steaks I left out, you couldn’t really do that to salmon, could you? And lunchtime, often spent in neighboring Wautoma, trying to find help through social services. I’ d work a little later trying to make up my time and be home at shortly before six.

John had developed an inflexible schedule:

up at 7 a.m., lunch at noon, dinner at 6 p.m., bed at 10 p.m.. He refused to eat if dinner if it was even a minute after six.

He was irritable. The sound of Don folding bags in the kitchen after putting away groceries brought him out of his chair in anger. He was irritated by the phone calls from family and friends which invaded our lives nightly. So many had done so much, it was hard to turn their concerns away.

But John began to listen on another phone when it was for me, and if anything was said that concerned him, he’d unplug the phones. I had to work at night, earning some extra income at home, and that was a major source of contention.

There were good moments. The day John and I met John and Tracy, my bosses, for lunch. They were so kind, and he was just a little like his old self. And the days that one of the aide’s husbands would take John fishing and he would come back sun-burned and healthy. And there were moments when we didn’t speak but were together that I could recapture the feel of who he was.

Meanwhile we had been interviewed for county aid, approved, and put on the waiting list which was almost 3 years long. Financially we were falling apart. John demanded control of his money, so I gave him blank checks which he cashed, treating his fishing buddies to lunch, etc. The bills piled up.

And then began the fight for guardianship. His parents wanted guardianship. Even one of the aides offered. Social Services recommended someone of their own.

One day I received a hysterical call from one of the aides at work. John’s parents had come to the house and forcibly removed John. They had taken him to Social Services and were demanding he be released to them. I filed a restraining order, and waited.

I talked to everyone, I cooperated with the system. The speech therapist called to lend me her support, the social worker at Mercy vowed his support, everyone vowed to help us survive.

Meanwhile at home, life had become unbearable and frightening. John spent hours on the phone with his family and hours accusing me of everything that could be imagined. He vowed to take everything away from me, including my stepson.

Don and I spent alot of time together, talking about life. I gave him constant reassurances that he wouldn’t be taken away. If only he knew the frantic calls to everyone from attorneys to the governor…

Things started to get blacker, John talked incessantly about doing away with me. Several nights I called friends to come over and stay. One night one of my friends talked to John for hours about his theory that no one could arrest him if he killed me on his own property. He was calmer for awhile and then paced through the house , getting more and more agitated. It was then that I tried to explain how I understood his feelings, but he denied that anything had happened to him. I left him alone, and sat down to read. While I was reading, he methodically went around the house, disconnecting each phone jack.

He then accused me of reading trash. He became more agitated because I was smoking in the house. I don’t remember what set him off, but he took my book and tore it in half. It scared me because a book is hard thing to tear in half. He swore at me, and I, out of character, swore back.

Then he threw me back against the couch and started choking me. I was so used to being his caretaker, I didn’t fight back. I was making noises and he kept telling me to shut up. But when it wasn’t as simple as he planned, he got frustrated and stopped.

I said, “you just tried to kill me.” He responded, you could never prove it. It was one of those moments when you sit perfectly still, while your mind races. Then I jumped up and ran for the phone in the kitchen. He caught me and when I tried to get it plugged in, he told me he had disconnected the phones from the outside. I started yelling to wake the kids up. The rest of it was just like a bad horror movie. The last time I was with him, he was in a halfway house. I remember driving away and crying like I’ve never cried before or since, because I knew it was over. The fight in me was gone.

But it has never really been over. I have moved on with my life; John and social security believe he is fully recovered. His family has convinced him he is better off.

And me? My life has changed forever. I never take tomorrow for granted, the fear of loss haunts me. And the nightmares; they are so much a part of me I can’t remember when they weren’t there. I never dream of him or the family I lost. My nightmares are all the same. I am always powerless in my nightmares, I cry out and no one hears, I speak and no one listens, I struggle and my struggles are in vain. Sometimes I envy him, he doesn’t remember.

Becca, the Spouse

Next Fighting and Believing in Coma Emergence

Gordon Johnson

Attorney Gordon Johnson is one of the nations leading brain injury advocates. He is Past-Chair of the TBILG, a national group of more than 150 brain injury advocates. He has spoken at numerous brain injury seminars and is the author of some of the most read brain injury web pages on the internet.

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