The nurse received report and headed toward the room with a good bit of reservation. After all, she had never taken care of a patient with ALS before. She was familiar with the disease through her readings as a student, but had never met anyone with this type of process. The many potential problems ran through her head and she hoped that the shift would go well.
Groaning and grunting sounds were coming from the room and the nurse thought perhaps the woman was in some type of distress. As the nurse headed toward the door, she hoped that the previous shift had enough sense to have the proper respiratory equipment in the room in order to suction if needed.
Bob was leaning over the bed with a communication board trying to ascertain what his wife’s wishes were. Through moving her head slightly and clicking her tongue, Sarah was trying to get her point across. Her husband was getting a little frustrated and the nurse asked if she could help.
“Sarah’s getting too tired to tell me what she wants. I think she needs to use the bedpan.” “No problem”, the nurse replied, as she went into the bathroom to retrieve the bedpan. “She is totally paralyzed except for the fact that she can still move her facial muscles and nod her head. I can help you turn her over if you would like me to. I take care of her myself pretty much full time.” The nurse explained to Sarah that she was going to assist the husband put her onto a bedpan and then they proceeded. Sarah grunted and wiggled her eyebrows at the nurse to let her know that something wasn’t quite right. “Are you on the bedpan okay? A nod told the nurse no. More maneuvering and then finally success.
The nurse shuddered to herself and thought how horrible! This is the disease that she dreaded the most. The patient becomes a prisoner in their own body. The mind is totally unaffected while the body fails around it.
The nurse and the husband left the patient on the bedpan and stepped out of the room to give her some privacy. This was a chance to get some much needed information regarding just how far into the process his wife was. The husband was a wealth of information regarding the disease process and told the nurse that Sarah had been diagnosed two years ago and deteriorated pretty quickly. He described the process by which the neurons stop firing to the muscle and the atrophy occurs. “Sarah started having trouble speaking and the doctors thought she had a stroke at first.” She was tripping on her own feet and it was misdiagnosed by 5 different doctors.” “She is getting weaker by the day and I don’t know how much time I have with her.”
Stay tuned for the rest of the story….