I’m a workaholic by nature. While Bob was at Shepherd Center Brain Rehab in Atlanta, GA, I set up shop in his room, bringing my laptop and a host of book proposals and web assignments to write as the weeks turned to months. I would turn my IPhone up loud and play his favorite classical songs. Oh, I was so sure he would snap back. He had too! Yet each time Bob would awaken and try to talk to me or his nurses, his progress was interrupted by frightening hospital events: vent psychosis, ICU psychosis and hallucinations and horrible infections, of which there were many and each one terrified me and robbed me of hope.
I remember Bob having a frightening hallucination one night at Shepherd Center. When he stared at his ventilator, he would fixate on the blinking lights and scream out in fear. The doctor on call, pulmonologist Dr. Andrew Zadoff, walked in and watched him for a few minutes. Finally, he spoke to me, saying, “Sadly, we can treat many problems but we can’t fix this one” (called ventilator psychosis).
Many times during the lengthy stay, Bob would awaken one day and appear to be quite normal and then sleep the rest of the week only hindered by brain storming, a hypothalamic stimulation of the sympathetic nervous system and adrenal glands, which causes an increase in circulating corticoids and catecholamines, or a major stress response.
During this period of brain rehabilitation, my children and I had fully decorated his bedroom with family pictures, motivational posters, silly trinkets and Gator football memorabilia that we knew would make him smile when he was more alert. Besides doing it for Bob, we really wanted his doctors, nurses and therapists to know Bob was not an ordinary man, but rather a great father, musician, author and friend. After all, knowing that he was someone important should ultimately affect his quality of care, we surmised.
Our New Normal
One morning while playing a CD of Bob playing the piano, the Shepherd Center psychologist entered the room. After looking at all the pictures we had posted, he pulled me aside and warned me that as Bob’s brain awoke, he would not be the “same Bob” I was married to for 40 years. Sadly, he could be angry, psychotic, childlike, extremely passive… or not remember me at all, the psychologist said. He told me our roles would change, where I’d be in charge of everything–making all caregiving decisions, plus our financials and insurance, a single parent, the home, the home health nursing staff and much more. Other therapists cautioned me that even though alive, living with someone with a catastrophic brain injury is a daily challenge.
“Wait until he gets a cold or the flu,” the Physical Therapist warned. Another social worker said we’d be making many trips back to the ER and ICU as time passed, so be prepared.
But…Bob Was Different
But not one of the warnings changed my perception of the situation. in my eyes, Bob was different from anyone on earth. This was my husband and best friend. He would come back—I just knew it. And I was willing to wait and help him heal every step of the way.