Tuesday, April 14, 2009

Five of the many who deserve "notice"

While care giving feels like a lonely task, the truth is I was never really alone. Jimmy lived in nursing homes and hospitals following his brain stem stroke. It was a choice I reluctantly embraced about two weeks after the stroke. 

"It will be a 25-hour, eight-day a week job," Dr. Gallagher told me, when he shared the news that he felt the paralysis would be permanent. Jimmy was 33 and I was 30, when we received this news. 

The decision to choose a nursing home is a difficult one. People seem to panic when they say, "I had to put my father in a nursing home." I don't think put is the right word. Jimmy was cared for in a nursing home. It was the only choice that seemed reasonable for us.

One night I sat in the Erlanger ICU waiting room in Chattanooga, Tennessee wondering, "Now how do I work 45 to 50 hours a week, take care of Jimmy 24/7 and keep a roof over our heads?" The numbers weren't adding up — even when you threw in determination, faith, love and promises of help from family and strangers. 

The complications that arose from that decision are another story including multiple examples of poor care to an eviction notice Jimmy received from a state nursing home for combat veterans. He was accepted, because he was a Gulf War Veteran. But the complexity (being mute and completely paralyzed) and the high price tag for his care (100 percent dependent), apparently nullified any promises of free, health care for a combat veteran.

Today, I was thinking about the people who helped Jimmy and me. I wanted to participate in “The Noticer Project,” which is a worldwide movement to “notice” the five most influential people in your life.

Andy Andrews wrote in a letter about the project, “My new book, The Noticer, is rooted in the belief that our time on this earth is a gift to be used wisely and one of the best ways to use that gift is by noticing those who have made an impact on our lives.”

So, I decided I should notice five people/organizations, who helped us. And, take a leap of faith that the one million and one other people, who helped us, will understand the list was limited to five and won’t get their feelings hurt.

1 — My twin sister Tracy S. Williams. She was pregnant when Jimmy had his stroke. She sat beside me in the ICU waiting room with her swollen feet propped up on the vinyl recliners. My niece Rosa was born prematurely in an emergency C-section. Ironically, as Tracy learned how to care for her new daughter, I too was learning how to dress, change, care and feed through a tube my 33-year-old husband.

2 — Mom and Dad Stenberg. My parents were there at every turn. They collected mail, fed dogs, visited and did whatever was necessary to help their children.

3 — J.W. Chastain. Jimmy’s first cousin and a great friend. J.W. would visit Jimmy at all of his various locations whether it was two miles or 200 miles away. J.W. was “Mr. Fixit” when it came to the wheelchair headrest and any other mechanical problem that needed attention. J.W. could advocate cordially or raise the roof, if Jimmy needed something. J.W. was there from the first day of Jimmy’s medical crisis to his last. No one could ask for a better friend.

4 — Gilmer Nursing Home Staff in Ellijay, Georgia. The staff was exceptional.  They went above and beyond their job descriptions to make Jimmy feel loved and ensure he was well-taken care of here. Jimmy knew what it was like to be mistreated, so the care provided here meant the world to him and all of his family.

5 — Shepherd Center in Atlanta, Georgia. I know it’s a catastrophic care hospital, but the lessons we learned here served us throughout the four years Jimmy lived following his stroke. We learned how to communicate with each other and health care staff. We learned how to advocate for Jimmy’s care. We learned the foundation of his care here. These lessons were crucial to our survival each day — as patient and caregiver — in hospitals and nursing homes.

Obviously, there were many more, who helped Jimmy and me.  Whether it was Patti or the gang at The News Observer; family or friends; or the many strangers, who stopped by to say hello or to play Scrabble; please know that you helped. You were appreciated (and noticed) then and now.