The Morris County Strides event will be in memory of, and support for all those who have been impacted by CJD.
My mom was my everything. Her name was Helen and she was a 5 '1 spunky, tell-it-like-it-is, kind-hearted, funny, always-on-the-go, Italian mother and grandmother. I knew something was wrong when the symptoms started back in April 2019.I saw her everyday. She was the strongest, most independent person I knew. She was my inspiration to keep going. I instinctively knew something alarming was happening. In the 3 months it took to get an appointment with a neurologist, her mental capacity declined rapidly.
My Mom became more confused by the day it seemed. She was also having mood swings. She was downright mean for no reason. I was scared, confused, and infuriated. I can only imagine how my strong willed, firecracker of a mother was feeling. What could I do? I didn’t have any leads and I felt like I was alone. I decided to love her and comfort her the best I could until we had some answers.
On November 19, 2019 my sister and I sat in the neurologists office and heard Creutzfeldt-Jakob Disease (CJD) for the first time. We had no idea what to expect. At that point the neurologist told us of the prognosis. My heart dropped. Terminal? No cure? 6 months at most?! My breath escaped my body. I don’t know how I finished that day. Wednesday morning I went to work and I took a leave of absence. I became her care-taker, full time every day. I spent my days with her watching her become a shell of the woman she once was. She could no longer be my mother and that was very hard to accept.
On December 7, 2019 we got her in a nursing home (one of the toughest decisions I had to make) As I started to research the disease I realized how quick and devastating this journey would be. I spent every day with her from 8am -8pm. My husband basically became a single parent for a couple months and I'm forever grateful for him and his unwavering love and support. I fed her, changed her diaper, washed her, talked to her, sang to her, hugged her.... And left crying every single night.
On December 26, 2019 my sister and I decided it was time for hospice. She couldn't swallow (it looked like it was painful), lost her vision, and her ability to speak and walk. Yet I was still there everyday with her holding her hand and telling her stories about the kids and what they were up to. I didn't want her to be scared or to know she was dying. I wanted to protect her as she protected me for the past 38 years. I wanted so badly for her to know I was there, she was loved and protected, and she could rest.
January 5, 2020 was the day. My brother, my sister, my husband, and 2 of her grandchildren were there for her last breath. I feel like it took mine as well. This disease is so ravaging and so rare it’s hard to explain to people who haven’t experienced it. I put my entire life on hold and she became my entire world.Looking back, I wouldn’t have changed a thing about that time we shared. I wouldn't have wanted it any other way. Every single day revolved around mom and then one day she just disappeared. I felt like my purpose was gone.
47 days after the official diagnosis, my Mom, so full of life and energy, was gone from this Earth. Her apartment was still full of food, her bills waiting to be paid, and her car with a full tank of gas. Nothing can prepare you for losing a parent even though it is a part of life. However, with a diagnosis of CJD, you don’t even have time to accept or process the loss. Usually by the time someone is diagnosed, their mental capacity is already diminished. There’s no time for acceptance or goodbyes. The person you’ve known your whole life is already gone and you have to adapt to this new “person”. The CJD Foundation played such an intricate part in my Mom’s journey. Every person I came into contact with was kind, knowledgeable,understanding, helpful, and compassionate. They provided resources that no one else had. It was a comforting feeling to know there were other people experiencing the same if not similar loss. The CJD Foundation was my anchor in a time of storms. Knowing I can’t bring my Mom back is a reality I struggle with, but the possibility of one day finding a cure so no one else has to go through this devastation is something I hope can be achieved.
This is My Story. This is Why I Stride.