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 energy to do crafts with us and support us in all our activities. As adult children, she was the kind of mother who would send us articles of interest, buy us things she thought we needed, and call us when the weather looked like we may 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 one 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 (if you catch my drift). 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. 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 dad, my brother, and I became her caretakers with the help of a fulltime caretaker who taught us so much. Pat taught us not only how to take care of my mom, but about how love to her through it. She also calmed my mom and assured her that it was ok to let us take care of her. It was my honor to be able to take care of my mom through this, but it is my wish that no other family has to be put through this relentless and cruel disease that has no cure.
My mom died in April 2019, one month shy of my parents 59th wedding anniversary. Our family was fortunate to have her with us for almost 8-months after diagnosis, but this disease affects people of all ages and in most cases, people die within weeks of their diagnosis. This disease needs to be brought to the forefront and cured. We need to further the research that the CJD Foundation does so no more families have their loved ones taken by this disease.
Text to Give
To donate to my Strides for CJD text STRIDES2022 to 50155.
Donations of $250 and above are considered sponsorships.
Diamond and Platinum Sponsors will have their name or logo displayed on participant t-shirts, the Strides for CJD website, and signage. Gold Sponsors will have their name or logo displayed on the Strides for CJD website, and will have their name listed on participant T-shirts and signage. Silver and Bronze Sponsors will have their name listed on the Strides for CJD website only.
Strides for CJD is an annual walk/run to raise awareness of Creutzfeldt-Jakob Disease (CJD), a rare neurodegenerative disease that has no treatment or cure. Through this event, anyone -- anywhere -- can pay tribute to their loved ones and raise funds for the CJD Foundation, a 501(c)(3) organization.
Funds raised support our programs including:
Our 24/7 helpline, support groups, conference, and other family programs throughout the year.
Research grants to help scientists make important discoveries and bring us closer to a cure.
Medical education to help raise awareness and understanding of prion disease.
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