I was never an ICU nurse or a home health nurse. My career has always been in pediatric emergency nursing. While we see special-needs
patients frequently, they are managed by family at home and usually come to the ED for help with a clogged gastrostomy tube
or a broken central line. I never thought much about what a family goes through in caring for a loved one at home until my
friend and running partner, Bob, got diagnosed with ALS (Lou Gehrig's disease) in 2006.
The last run
Earlier that year, during one of our runs, he showed us muscle fasciculations in his chest. We told Bob it was probably nothing,
but we knew it wasn't good. That fall, we ran a marathon and qualified for Boston, which was Bob's goal. Two weeks later,
after extensive testing and second and third opinions, he was diagnosed with ALS. We decided to keep training.
Eventually, Bob lost the use of his hands and most of his upper body strength. Even so, we ran some of the race, and walked
a lot of it, but we finished. The Boston Marathon was Bob's last run. After that, we met every Saturday to walk with him.
Soon, he couldn't swallow and needed a feeding tube. His children and wife, Deb—who has lymphoma and was receiving chemotherapy—learned
to give him tube feedings. When he became too hypoxic to walk with us, our Saturday runs ended with us going to Bob's house
and giving him his morning feedings. As the disease progressed, Bob's respiratory system became more compromised. One year after diagnosis, he decided to get a
tracheostomy and a ventilator. I, along with many other friends, learned how to suction a trach, to manage the ventilator,
and to bag him. His family learned to deal with mucous plugs, prevent pressure sores, and adjust the ventilator. They created
a hospital room in the house, and two of his sons moved home to help care for him. Marathon medals and pictures surrounded
his bed, reminding everyone that he was still "Bob the marathoner" and not just "Bob with ALS."
Valuable lessons
I learned several things from this experience. The most important is never to judge the choices of others. We can't know what
we would do unless we are faced with a similar situation. Additionally, don't define a person by his disease. Despite ALS,
Bob is positive and interested in all that we are doing. He welcomes our weekly visits, and his wife now focuses on him and
not just on her own terminal illness.
As nurses, we are lucky to have a career where we make a difference and get to witness such courage. Like Deb says, "I don't
believe in miracles; I depend on them."
DONNA THOMAS is a member of the RN editorial board and director of the Emergency Department and Rapid Treatment Unit at Primary
Children's Medical Center, in Salt Lake City.
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