Strides for CJD 2023

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. We saw her primary doctor on July 15, 2019. His response was that this was a "part of getting older" (memory loss) but I knew my mother. I saw her everyday. She was the strongest, most independent person I knew. She was my inspiration to keep going. It was more than that and instinctively I knew it. In the 3 months it took to get an appointment with a neurologist, her mental capacity declined rapidly.

One example that stood out to me as concerning was her inability to discern day from night. My Mom played a huge part in my childrens lives. She came over everyday at 5:30 AM to get them off to school. My job required me to leave early in the morning so Mom was there. Being an “old school” Italian mother, she’d come over and not only get them off to school but she’d make their beds, cook them breakfast, wash any dirty dishes, and even make MY bed! It’s safe to say we were spoiled, but it’s how she showed her love.Family was always her number one priority. One NIGHT around 9:00 PM she came over. I was upstairs brushing my teeth and I thought I heard her voice. I remember the kids laughing and my husband coming upstairs to tell me the “funny thing” that my Mom just did. She thought it was morning time and that she needed to get the kids off to school. (even though it was dark out) At that point I laughed too. Strange, yes but my Mom often juggled multiple things so it wasn’t out of the question that she was just confused. We had no idea this was just the beginning. My Mom became more confused by the day it seemed. She tried to hide it, she even had my kids not tell me if she “accidentally” came over to get them ready for school. She was also having mood swings. She was downright mean for no reason. My concern became more and more prevalent. It was so alarming to me that we went back to her primary physician on July 29, 2019 (only 2 weeks from her first appointment) and I was again told this was just a part of getting older. 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.

Finally on November 4, 2019, we saw the neurologist who ordered a whole slew of tests as part of a “dementia work-up”. We checked each test off the list. Her final test was an MRI of her brain on Friday, November 15, 2019. Monday morning, November 18, the doctor called me and told me to bring her in on Tuesday. 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. I remember my Mom (in her confused state) asking to go to the bathroom as the doctor began to explain things. She wanted to go alone, so we allowed her to. At that point the neurologist told us of the prognosis. I often wonder if my Mom knew something bad was happening and wanted to give us a moment to process it without her there. She was going to need us to be her strength and she knew that. My heart dropped. Terminal? No cure? 6 months at most?! My breath escaped my body. I don’t know how I finished that day but I do know my Mom asked “where we were going for dinner” (as if nothing happened) and I told her we’d go wherever she wanted. She was very excited for Panera, so we went. My sister and I sat in silence. Mom asked “why I looked sad” but I told her I was just a little tired. 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 5th I found her wandering barefoot outside her apartment at 7am. I remember her looking in everyone’s parked cars with the most frightened look on her face. My heart just shattered seeing her in that state. (we live in NJ-it's cold here in December) I had no idea how long she'd been out there and she was so disoriented she couldn't tell me what she was even doing. 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 and I didn't think it fair to have my kids (ages 13, 17, &18) witness their grandma in that state. 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. Although the staff at the nursing home tried to understand, they couldn’t. No one knew of the disease. I received educational information from the CJD Foundation which I used daily to help everyone there (nurses, doctors, physical therapists, aides) understand the magnitude of this disease. I remember arriving at the nursing home each morning not knowing what to expect. She would have crazy stories of foxes coming in her room and eating her food, her Dad (who passed away many years ago) would come to say hi, she might be angry and physically abusive; each day was different. It was like entering an alternate universe and I just had to go with it. We captured the fox, we sang to her Dad, and I allowed her to be as angry as she needed to be. I remember crying after one of her episodes because she was so nasty. Less than 5 minutes later, she put her arm around me and asked who made me so upset. I wiped the tears and said “no one Mom, I’m okay.” By the middle of December, my Mom stopped being able to speak. She became extremely sensitive to light, sound, and touch. I felt helpless and hopeless. All I could do was love her and make her feel safe and not alone. That became my daily goal. She slept a lot and I sat right next to her and held her hand not wanting her to wake up alone in an unfamiliar environment. Once she couldn’t walk anymore, we got her a wheelchair and I would push her around the unit for hours while she rested her head on my right wrist (usually pushing with only my left hand). I would talk to her as if we were casually out to lunch. Sometimes I would sing to her, “You Are My Sunshine” or a silly song like “A Bushel and A Peck”. She didn’t respond with words anymore but her head resting on my wrist was enough to keep me going.

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 feel like most people I've spoken to can’t truly understand. 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. I wanted to go sit in her apartment and wait for her to come home from grocery shopping or go sit at the nursing home and wait for her to come back to her room after therapy (I did both the first week she passed) I knew the end result was death and everyone said once she passed things would get easier but I don't think that's true. I think with time I’ve learned to deal with her absence a little better but the hole is still there. I know she’s around me and our family but I can’t say the pain of missing her physical being has gone away.

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.