Enthusiastically, I walked down the hallway of Western Rehab. I was anxious to see Mark and wondered what new words he might say to me today. After hearing him say, “Love ya back” and “I love you,” three times the night before, I was hopeful he’d be even more alert this morning. The hallway seemed longer and brighter and I couldn’t get to his room fast enough. I was tempted to run down the hallway as our children often tried to do, but since I wouldn’t allow them, I decided it wouldn’t be appropriate for me to do it either.
To my dismay, I walked into Mark’s room and the nurse told me he had a fever and his heart rate was fast. He had an infection and the doctor was investigating the source. They pulled the catheter from his bladder and replaced it with a condom catheter in hopes the infection would clear up. Mark was totally unresponsive that day. Even when the kids came to visit that night, there wasn’t the usual blinking of his eyes to their yes and no questions.
We thought the intravenous antibiotic must be working because the next day when my mom brought the kids to the hospital for a visit, he was answering some of their questions with the routine blinks of his eyes. When they kissed him good-bye, he surprised each one with a soft, tranquil, “I love you.” Overjoyed by words that are so often taken for granted, the kids skipped out of the room wearing ear to ear grins, each holding Grandma’s hand. Mark slipped back into his deep sleep.
“I think what Mark needs is a feeding tube placed directly into the stomach through the abdominal skin,” Dr. Wright said.
“I would hate for him to have another surgery. He’s getting better. He’s breathing on his own now and responding appropriately to questions with blinking. I’ve heard him say, ‘I love you’ to me, the kids and my mom. I don’t think he’ll need any feeding tube much longer.”
“Yes, he is getting better, but we don’t know how long it will be before he can chew and swallow. It may take some time before he can get enough food or liquids by mouth.”
Relearning to chew and swallow never entered my mind. These things we do automatically. Wouldn’t it just come back to Mark naturally? Fear crept in, would he have to relearn everything?
Mark’s fever persisted over the next few days and despite the intravenous antibiotics, he developed pneumonia and was moved to the Special Care Unit. The respiratory therapists were giving Mark breathing treatments and regularly rolled him on his side while rhythmically patting him on the back, trying to get him to cough up the mucus. Unconscious, with a feeding tube and oxygen in his nose, I could see the difficulty in his breathing as I observed his rapid chest movement. I knew pneumonia could take his life. He had already lived eleven weeks longer than the neurosurgeon expected, surviving a shunt surgery and a tracheotomy, which both had now been removed. Could he survive another surgery and was it absolutely necessary? He successfully fought the liver infection, why couldn’t he overcome this one? I’ve heard pneumonia called “the old man’s friend” in cases when it cuts short the suffering associated with lingering illnesses or injuries. Was Mark tired of fighting infections while trying to heal from broken ribs, a collapsed lung and most concerning to everyone, his traumatic brain injury? I couldn’t blame him if he wanted to give up. I was tired of being stuck on this roller coaster myself. Not enough ups and too many downs. This definitely wasn’t the ride we wanted or expected. How much more can we endure with no end in sight? Where do we get off and how can we do it?
The only thing I could think of to make Mark more comfortable was to rub lotion on him. I was raised in the dry air of Utah and being an Avon Representative, I was familiar with their skin care products and a believer in their benefits. I rubbed his feet and hands regularly. Like a snake shedding skin, Mark’s callouses were peeling off. His new skin felt baby soft. A nurse walked into the room to take Mark’s vitals and she admired how well the product was working and how good his skin looked. Impressed, she asked me to order her some of that lotion. As soon as she walked out of the room, Mark spontaneously said, “Way to go.”
Where did that come from—my imagination? I stopped rubbing his foot and asked, “Did you just say way to go?”
“Ya. On your sell.”
This was typical of Mark, usually a supporter and cheerleader of mine, but I was shocked by his matter-of-fact reply. He heard and understood the conversation. Although his response was delayed, it came naturally. I wanted to call the nurse back so she could see and hear Mark, but I was afraid he would drop back into unconsciousness before she arrived. I took advantage of the moment by asking questions that required more than the typical yes, or no answers he was used to hearing and answering with the blinks of his eyes.
“Who I am?”
“Barbara.”
“How are we related?”
“You’re my wife.”
“How many kids do we have?”
“Two.”
“Can you tell me their names?”
“Christopher and Katie.”
“What pets do we have?”
He closed his eyes without an answer. I knew he was sick and exhausted. This was the most he’d spoken in months, but I didn’t want the discussion to end. Frantically, I shuffled through the Reader’s Digest I had been reading to him earlier and found the picture of a cat that looked just like ours.
“Look at this picture,” I said as I nudged him. “Who does this look like?”
He opened his eyes again, looked at the picture and said, “Tom.”
“Yes, you remember.”
His eyes closed and he fell back into his deep sleep.
I knew the questions were simple with obvious answers from my husband of twelve years, but still, I was so relieved. He knew my name. He remembered the kid’s names and recognized a picture of a cat similar to one of ours. I literally jumped for joy and ran out of the room to find the nurse.
Anxiously, I told her the extent of our dialogue. “He knew and answered every question. He’s going to be okay; I know he will.”
“Yes he will,” she said, accepting my hope and excitement without trying to change a thing.
I was ecstatic, not only for Mark’s awareness and answers, but that someone besides family believed in us. Just when I didn’t think I could take another moment of the twists and turns and our lives being turned upside down on this roller coaster, I was blessed with reassurance that it would be a worthwhile ride. I just needed to continue holding on for dear life.
Uniting Caregivers 