My mom was a wonder woman. She had 5 children in 5 years, with my sister and me being born in the same year (Jan and Nov)! She kept us in line, kept the house spotless, and still had the energy to do crafts with us and support us in all our activities. My mother never stopped being a mother even when all of us became adults. She was the kind of mother who would send us articles of interest, buy us things she thought we needed, and call us whenever the weather looked like we might need an umbrella. She never stopped putting us first. She truly was the best mom.
After we were all out of the house and on our own, she started to work. She got a job that allowed her to advance and retire 20 years later from Northrop Grumman in Human Resources. Not the type of person to sit idle, she became a crossing guard in retirement. Her children at her crossing loved her too, so much that one dressed up as a crossing guard for Halloween and said she wanted to be a crossing guard just like her when she grew up!
It was on a girls’ weekend with my mom and my sisters in late June 2017, that we knew something was wrong. My mom, the woman with a steel trap memory and OCD tendencies, was losing track of her belongings. She also couldn’t bear the three sisters' excited banter. This was a woman who held all of us together emotionally, never losing her cool, raising her voice, or falling to pieces. Now she was crying in front of us when we had our normal sisterly squabbles.
Returning from that trip, we witnessed things changing. Her personality changed. She would get angry. She would say mean things so out of character for her. Her forgetfulness got worse. There were car accidents. She couldn’t fill out her timesheet online anymore. She complained of changes to her vision. She left the house one day and couldn’t find her way back. Thankfully, she was only 2 blocks away and a kind man brought her home. At least she knew where she lived.
Something was wrong but she was also 76 years old so doctors evaluated her as if she had Alzheimer’s, not really telling us what was wrong. It seemed like every test took months to get back results. She continued to decline, withdrawing, becoming a meek woman, someone who was not her. We finally got the diagnosis in August 2018, over a year later. After her diagnosis, we all went on overdrive to figure out what we could do to help her. This is how we found the CJD Foundation and the Cleveland Clinic. I still remember when we arrived at the Cleveland Clinic in October 2018, how upset she got when she could not sign her name. She never gave up and tried and tried until she finally eked out a signature (not one that resembled her signature, but she wrote her name on the paper). We started hospice care immediately on the advice of the Cleveland Clinic.
It seemed like her cognitive skills went downhill rapidly after her assessment and eventually she was robbed of the ability to even know how to dress herself or do her normal household chores. She was unable to have a conversation, then speak in full sentences, and it broke my heart every time she would say she was sorry. I knew she was sorry to have us take care of her. She was the person who took care of us.
My sister Timi dropped everything and left San Diego for two months to be with my mom and to help. My sister Leslie came in from Austin and my brother, Chris drove up from Richmond whenever they could. When my mother needed full-time care, my dad, brother Dennis and I became her caretakers with the help of Pat, a professional caretaker who taught us so much. Pat taught us not only how to take care of my mom, but about how to love her through it. She also calmed my mom and assured her that it was ok to let her family take care of her.
My mom died in April 2019, one month shy of my parent's 59th wedding anniversary.
CJD affects people of all ages and in most cases, people die within weeks of receiving a CJD diagnosis. This disease needs to be brought to the forefront and cured. We need to further the research being done and the work of the CJD Foundation. It is my wish that no other family has to be put through this relentless and cruel disease that has no cure.
Cori Asaka Pratel Team Captain $1,000.00
