Trust after severe injury: a caregiver’s perspective

The story begins with a car accident. My wife, Lorraine, suffered a severe head injury and I, a lacerated spleen. Luckily, our two children, aged four and eight, were not injured. In the emergency department, I could see Lorraine in the opposite room through the glass. She was hooked up to a number of machines, including a ventilator. I was discharged on day 6; Lorraine remained in a coma in the ICU.

Since I was on convalescent leave, I visited her daily. A few days after admission, her neurosurgeon appeared in the doorway. Glad to see him, I walked over to talk to him. He looked at me over the top of his glasses and said, with a look of surprise and distrust, “And you are?” “I’m the lady’s partner.” Whereupon he replied suspiciously, “Ah, it’s the first time I’ve seen you.”

Although I was disappointed by his attitude, I asked him what areas of the brain were affected and the consequences of Lorraine’s head injury. He replied, “The corpus callosum is affected, there are diffuse axonal lesions … ” and some other information I didn’t understand. I insisted on knowing the consequences but he gave little new information.

That evening, I searched the Internet for information about diffuse axonal lesions and the corpus callosum, which made me even more worried. My first meeting with the neurosurgeon hadn’t created a relationship. I felt he kept his distance, and I never established a relationship of trust with him throughout Lorraine’s stay in hospital. However, I had confidence in the nurses, who were professional and attentive.

After a month, the head nurse informed me that the neurosurgeon wanted to talk to me. I asked my brotherin-law and his daughter, a nurse, to be present. However, the day before the meeting, the head nurse told me that the doctor wanted to postpone it. I insisted that the meeting go ahead because arrangements involving two other people had already been made. The next day, he arrived, a little late, looking annoyed.

The neurosurgeon convincingly described a catastrophic situation.

“Forget the Lorraine you know. If she manages to get off the ventilator, she’ll probably be in a vegetative state, and that’s not a good quality of life.” He said she had multiple axonal lesions. He said that patients on ventilators often develop pneumonias and other infections, and families tend to ask for the infections to be treated once, perhaps twice …

I thought I knew what he was getting at, and after a few questions I ended the meeting by thanking him. Then I told my brother-in-law and his daughter that I sincerely believed Lorraine would come back to us. I later learned that the nurses and the doctor had spoken to my mother-in-law, my wife’s family and even a friend to get them to influence me to “listen to reason.”

Because I didn’t entirely trust the neurosurgeon, and in an effort to get more information, I asked to see Lorraine’s chart. It was over 12 inches thick. Not surprisingly, because I don’t have a medical background, I couldn’t make much sense of the notes and scribblings.

One morning when I arrived in her room, Lorraine was no longer connected to the ventilator, even though several previous attempts to take her off had been unsuccessful. No one had informed me of this very encouraging development!

A few days later, as I was taking my leave, Lorraine opened one eye, smiled at me, raised her left arm and put her hand on my cheek! Overjoyed, I looked toward the nurses’ station. No one was there! I would have liked to have had a witness. After a few minutes, she closed her eye again.

About three weeks later, I arrived at Lorraine’s room shortly after my sister-inlaw; as I put my coffee on the windowsill, I heard her exclaim, “She’s awake!” The nurse came into the room and said matter of factly, “Yes, she’s been awake since this afternoon.” And I hadn’t even been told!

Lorraine woke up for good, smiling and recognizing us, after two long months in a coma. Irregular and ineffective rehabilitation followed, and I felt that a rapid transfer to a rehabilitation hospital was necessary. However, it was difficult to convince the neurosurgeon to authorize the transfer; he didn’t seem to believe in Lorraine’s chances of rehabilitation.

Another doctor explained that it was a very important decision to transfer a patient to rehabilitation rather than to a long-term care centre, and that the professionals were not convinced that Lorraine would benefit much from rehabilitation. I understood these considerations, but I felt that it was my duty to insist on the transfer. I was convinced that we should try intensive rehabilitation rather than accept that Lorraine was going to live in a long-term care centre for the rest of her life. So I insisted, and obtained the transfer to a facility where a team of experienced therapists set about helping Lorraine progress through intensive rehabilitation.

We quickly established a relationship of trust with the physiotherapist, speech therapist, occupational therapist, social worker and nursing staff at the rehabilitation facility. Regular meetings were held with the entire team to discuss the intervention plan and the progress made to date. We worked in partnership with the whole team. I sometimes had to express Lorraine’s needs myself because of her speech difficulties.

Lorraine was granted weekend leaves and I soon realized that we would need to move to a new single-story home better suited to a wheelchair. When Lorraine’s progress plateaued after six months of rehabilitation, we were told that she would soon be discharged. I negotiated an extension to allow us to complete the adaptation of our new home. All of this was done with respect for Lorraine, myself, our children and our plan, which was to move into the new home, continue private rehabilitation and live as normal a family life as possible. Although Lorraine is hemiplegic, needs a wheelchair to get around and has some speech difficulties, she is happy to be alive and to see her boys, now aged 21 and 26, evolve.