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During a chilly morning in early April, John woke Janet up for school. Janet usually gets up early, but today she did not get up at her normal time. John knocked on her bedroom door and could hear Janet mumble.
“Peanut, you need to get up. You are going to be late for school,” John said.
“Ok Nancy... I mean.... Dad,” Janet said.
“I’ll make some breakfast,” John said.
“Ok Mom.... Dad,” Janet said.
John went downstairs and prepared a quick breakfast. A few minutes later, Janet came downstairs in her basketball uniform from her summer league when she was in sixth grade. She grew since then and the uniform barely fit her.
“Peanut, is that what you wanted to wear to school?” John asked.
“Oh, wow I don’t know why I put this on,” Janet said giggling. She put her hands to her mouth, something that she has not done since she was a small child.
“Why don’t you put something on more your age,” John said laughing back. John thought she was joking.
Janet went up to change and came back downstairs in regular clothing. She ate her breakfast and barely made it for the bus.
John went to work at the group home for the day shift. Around noon, he received a call from the school. It was the school nurse. She called to tell John that Janet was experiencing some odd behaviors and she was complaining of a bad headache. John asked what odd behaviors and the nurse told him that she was attending the first-year classes. When the other students thought she was joking, she laughed then asked to go to the nurse.
John called Janet’s primary care to make an appointment for today. He managed to get an appointment at three. He asked his supervisor if he can leave early which she allowed. John picked Janet up at school and she was in the nurse’s office with a cold cloth on her head. She smiled at him, and they left.
John and Janet made it to the appointment on time. Janet was very apologetic, and she said she did not know what was happening. She said she has not been sleeping very well the last week; often waking up. Janet was thinking she might just be overtired.
At the appointment, the doctor checked her vitals and found nothing that could contribute to this confusion. She referred Janet to a neurologist, who specializes in brain activity. John called the neurologist at Mass General to schedule an appointment. The appointment was scheduled for the end of the week. John took the rest of the week off from his job and Janet took the rest of the week off from school.
During the next few days, Janet was back to her normal self. She did have a few instances of confusion. One day she asked to go over Nancy’s house to play cards, which John told her that Nancy died a year ago, which she cried and then remembered. Another day, Janet had trouble tying her shoes. John was getting more concerned, and it felt to him that this appointment would never come.
The day of Janet’s appointment came, and John took her. The neurologist was kind and talked to both John and Janet. John told the neurologist of Janet’s ongoing situations of confusing and odd behaviors and Janet told the doctor that she has not been sleeping well. The neurologist ran some tests on Janet, including CT scans and MRIs. The neurologist scheduled an appointment for following week to discuss the results once they were completed.
John and Janet had a good weekend as they waited for the results. They went to the beach and played basketball. Janet loved going to the beach. She always collected seashells and spent time cleaning the trash from the beach. They also went to the movies and out to pizza. John was beginning to think it was just a phase and that she was getting back to her usual self.
The appointment was scheduled for a Wednesday and that Wednesday came. The neurologist met them in her office. The neurologist had Janet wait in the waiting room and gave her some puzzles to complete.
“Mr. Remington, it is rare this early on, but I believe your daughter has dementia,” the neurologist said.
“Isn’t she too young for that?” John said with concern in his voice.
“If you look at Janet right now, it looks like she is struggling with those puzzles. Those puzzles were designed for toddlers and are quite easy to complete for a smart lady her age,” the neurologist said.
“I see. Does that mean she will...?” John could not finish the question as he got choked up.
“It is rare for young people to develop it, but it has happened. With the right treatment the dementia can be slowed down and contained. If successful she will live many years. With Janet being young and for us to catch it this early, I think she will be fine,” the neurologist said confidently.
“Ok what will we need to do?” John asked.