The above picture shows my late husband Jimmy with a nurse during a fishing trip. A brain stem stroke in November 2001 left him mute and completely paralyzed at age 33. He could blink, move his right middle finger and thankfully regained his ability to smile. The list of things he couldn't do is much, much longer. A still photograph made him appear more normal. In person, he frightened some people, because it was like sitting with a statue as he didn't move. He communicated with eye blinks. I wrote about it here. He died in November 2005 — two days shy of the stroke anniversary.
Now for the story:
If you made it all the way down here, thanks for sticking with it.Jimmy looked dead in the hospital. I said he stood six feet, five inches tall. He was five feet, 10 inches.My mind blanked. I didn't know what to do. This time, he couldn't help me. Family surrounded me, but I felt alone. Jimmy had a brain stem stroke.Days passed. I realized Jimmy remained in his body. I heard I love you again through eye blinks.I lived 38 days with strangers in the ICU waiting room. We were all different, but medical emergencies made us equal. The time helped me adjust to my new reality.Jimmy communicated with a speech therapist. She recited the alphabet. He blinked.At the veteran’s nursing home, a rough start almost killed him. The staff acted put out immediately. They didn’t like their new patient. One night, I played a movie for Jimmy. I left to sleep in a hotel. The movie remained on when I returned the next morning. No one thought to turn it off or ask Jimmy, if he wanted the TV turned off.An ICU nurse had warned me to take it one day at a time. I understood the cliché six months later as I argued with staff about dressing Jimmy. No one dressed him and he lay in an adult diaper in bed. I never would have held it together had I known the future. I took it one day at a time.I didn’t like the nursing home situation, but had to leave. I lived three hours away from Jimmy. Home care wasn’t an option for us. At our ages — Jimmy at 33 and me at 30 — neither of us thought about long-term care insurance. We chose the veterans home, because it paid for most of Jimmy’s care since he was a Gulf War veteran. I needed medical insurance on both of us and to earn money for rent, food and transportation.Jimmy’s condition — being mute and completely paralyzed — equaled expensive care. His intense needs didn’t fit into the system. Some staff acted like he became paralyzed and unable to speak on purpose to add more work into their schedule.It took two hospitalizations and several federal complaints I made on Jimmy’s behalf. The nursing home hired private nurses. These women and men cared about Jimmy. The veteran’s home didn’t like the cost.With the delivery of a salmon-colored certified notice in the mail, the nursing home announced Jimmy’s eviction: We can’t care for you. Go.Evict a veteran? I had no clue what to do, except protest. I talked to an attorney. No one wanted to help me, because they served the elderly in nursing homes and now 34, Jimmy didn’t fit their criteria. One attorney felt sorry for me and helped.We fought to keep Jimmy at the veterans home — a place we hated. No one else would take him.We won. He stayed. We complained. It drained us.Being apart wasn't new to us. Jimmy worked out of town early in our marriage. This separation was different. He couldn’t pick up the phone to call on his own.Jimmy and I created circus tricks for his survival. We performed our tricks nicely to show non-believers that Jimmy was there.By some miracle, he moved to a nursing home in our hometown. Instead of a three-plus hour drive to see Jimmy on weekends, I lived one-mile from him. I slipped into Jimmy's room daily.My relief turned to grief, as Jimmy demanded I be with him more.We celebrated our 10th wedding anniversary. Jimmy asked for a divorce that night. “I feel like No. 3,” he spelled. “You put work and family before me.”I added up our daily and weekend hours together. We spent more time talking than couples that lived under the same roof, I told Jimmy. In our post-stroke world, there were no dishes to wash or yards to mow. We only had each other and stories to share about our day.My answer to the divorce question: No. I did not say obey in our marriage vows.Problems with his care persisted. I dealt with them during daily visits.People, who knew Jimmy, didn’t visit. They promised: We’ll visit, if he is closer.One day, I loaded Jimmy up on a wheelchair, public transit van. He visited the apartment I moved into after I sold our house. Everything we had together— a house, seven dogs and his business were all gone. They had no purpose in our new life.A setback — returning to the ventilator — sent Jimmy to an Atlanta hospital to be weaned from the machine. He breathed on his own again, but got stuck at the hospital.Jimmy remained in limbo. His nursing home refused to readmit him. No one else around the state wanted him either. He felt dumped.With little changing, I worried what would happen to me sitting in his hospital room. Selfish, maybe? My reality: If I don’t live, I can’t stay.Jimmy didn’t like my new plan. I visited London. He enjoyed my stories.Later, Jimmy wanted baptized. His God Squad preferred dunking. Complete immersion would kill him. He dropped that goal.One day, I received a call that a nursing home accepted Jimmy. The home in Savannah was more than six hours away from me. The hospital shipped Jimmy South. He blamed me for letting this happen. I couldn’t do anything about it, but arguing about this didn’t change our reality. An ambulance picked him up. I followed.I panicked at this distance. If something happened to Jimmy, I might not make it to his side. This move jeopardized my promise to be at his side.People from home step in to help — a doctor, a nursing home and an ambulance company. It took one offer of help to right all the wrongs. This move gave us hope.We didn’t care that we had to train up a whole new staff. We were home. The nursing staff cared.Without the health care dramas, our routine unsettled us. It sucked.The frequency of Jimmy’s X-rays increased. It scared me. Jimmy's treatment options dwindled with each one.An elephant arrived unexpectedly. The fat giant landed on Jimmy’s chest. Heart attack or elephant either way it hurt. He couldn't breathe and this time it was different.This shortness of breath hurt Jimmy. I couldn't breathe either.Jimmy worried he would smother to death. He decided to refuse treatment and let life happen. Without treatment intervention, he died. Jimmy knew the consequence. He had been fighting it for almost four years, since the first time we interrupted death following his stroke.When Jimmy left us, his clock became a clock.At the funeral home, I checked his ring before saying goodbye. The funeral director asked, if I wanted his wedding band. It was his. It stayed with him. He never could wear it at nursing homes for fear it would be stolen.My uncle noted the large turnout. “It’s a good crowd for a Tuesday funeral,” he said. I wished I could share that tidbit with Jimmy.Some say to wait six months or a year before making a big change after a death. I left in six weeks and moved to North Carolina. I returned to newspaper work.Unlike a sudden death, I dealt with the possibility of Jimmy's death from the moment of his stroke. I prepared myself for his death multiple times over four years. It wasn’t any easier, because I knew it was coming. I returned to his empty nursing home room to gather his belongings after the funeral. The first day I didn't go to the nursing room proved he was no longer with me. I was alone. Despite all my preparations, I was never ready to say goodbye.I visited his grave twice. I had nothing to say to his headstone. We spoke when he was alive.