After a lot of thought, I am going to share my perspective on my dad’s last few months.
My dad was diagnosed with (sporadic) Creutzfeldt-Jakob’s Disease in July 2024.
Where to start?
My dad was a perfectly healthy, active, 55 year old man with no underlying health problems. My dad was always a person who was very attentive, thorough, knowledgeable, and precise with everything he did. My dad built my parents house, along with a full greenhouse on the property, fixed everything he knew how to or researched how to do it if he didn’t know, and was a hardworking man in every aspect of his life. My dad was the most selfless, driven, compassionate, humble person I ever knew. He loved his wife, kids, and grandchildren more than anything in the whole world and would protect and care for us with absolutely every ounce of his being.
As my twin girls and I live a few hours away from my parents, we would FaceTime and send pictures very frequently. This information is very important for details in my story, as my mom would constantly text or call me with all new occurrences and updates.
In January 2024, my mom started to notice some things that were “off” going on with my dad. Of course we didn’t think it was anything too serious, as you know, as a typical human gets older, you would think that these would just be normal symptoms of aging. For example, my dad seemed to lose some slight track of days and times, but nothing alarming as he was working full time and always kept himself busy with projects around the house. During FaceTiming with my parents, Dad seem to be quite normal and his usual self.
In February 2024, my dad seemed to be a little more anxious than usual, but we had some stressful events going on in our family that seemed to just be an effect of that stress. However, in the first week of February, Dad seemed to be having trouble remembering daily activities that he had been doing for several years (10+), such as making his coffee, and packing his lunch for work. He was also having trouble operating his phone. As we got into the second and third week of February, my mom was informed from my dad’s workplace that Dad was forgetting how to do his job duties at work. And it was on the 19th of February when we truly found out something serious was going on, because my dad forgot how to drive home from work (where he had been employed for 10+ years). My mom, sister and I, began throwing ideas around for what was going on with Dad. I immediately thought that he was suffering from PTSD, anxiety, and depression. As my dad was fidgeting more often, and his mood seem to change very quickly, and he would obsess over topics and situations. My second thought was my dad was having some partial seizures to cause him to forget things, so my mom took him into the doctor to get an MRI and it was completely clean. The end of February Dad was having “impending doom” episodes and lost all problems solving skills, he also was having trouble writing full words and his perception seemed to be off, which also led my mom to take him to the eye doctors. The eye doctor claimed that his vision was fine that there was just a “disconnect” at the back of his eyes. And within the next week, my dad seemed to have more of a temper and thoughts that his family was keeping things from him. FaceTimeing my dad started to change slightly as his attention was very short.
In March 2024 dad stopped working and continued having a short temper. My dad also started to suffer from extreme insomnia. My mom would inform me of situations where my dad was hallucinating, or thinking inanimate objects were real. And at this point my mom looked into the VA for PTSD symptoms or possible military chemical exposure…. my mom informed me of so many back-and-forth interactions between the VA and other doctors. I could truly hear the frustration in her voice when so many people in the medical field let her down. Especially considering the biggest disappointment was a place that was supposed to help veterans. My dad seemed to have “slightly normal” days, but then he would forget where the bathroom was and ask questions multiple times, not remembering the conversations already happened. I began to FaceTime my dad almost every day to observe his symptoms and give him peace and happiness seeing me and his grandkids. Dad seemed to be more somber and not have a whole lot to say. But he would always smile and laugh when his grandkids were talking to him on the phone. My parents came to visit the girls and I for Easter and Dad still seemed to be somewhat “normal-functioning“, but he was very anxious acting, and didn’t always have a lot to say. My dad also had no idea where anything was at this point, including the house that he built almost 26 years ago.
On Easter weekend, this was the last time my girls got to see their papa.
April 2024 we began speculating of more reasons why these things were happening to Dad, because none of the doctors could give us answers and every appointment was booked out for several months. So our family did our own research. The most we got from doctors was that my dad was experiencing early onset dementia. But we did not believe this at all. We believed the dementia was caused from something more. And at this point, Dad did not want to eat or drink a whole lot, and my mom tried to come up with several different ways to feed him food, or make him nutrition smoothies. My dad also was struggling with personal hygiene. Which was very strange for him being a veteran and always being clean cut and taken care of. My dad would refuse to have anybody trim his beard or his hair and seemed to be forgetting several friends and family members in his life throughout the years. My dad would also sit next to my mom while she was working during the day and not move off the couch or do anything for several hours and just blank stare. Facetime was difficult at this point because he didn’t understand where my voice was coming from or what usual objects (such as a phone) even were. My dad seem to have way more hallucinations every day, including people on the TV being in real life, people in mirrors coming to get him, pictures on the wall being real, and other unimaginable things. My dad would also be awake for many hours of the night. Towards the end of April is when we weren’t quite sure if he remembered my sister and I.
May 2024 just seem to get worse every day with constant escalations of hallucinations, forgetfulness, and the inability to do any daily tasks at all. During the month of May and June, my dad had several different appointments with different doctors and specialists who couldnt provide any answers for what was going on with my dad. All of my dad‘s lab work and MRIs and other scans were completely clean. And wow, my mom was an absolute superhero taking care of my dad full-time, scheduling appointments, and working. My birthday is at the end of May and this was the first year he had no concept of dates so he completely forgot about it (which is a huge deal considering my dad would call me and send me happy birthday videos of him every year).
June 2024, my dad stopped eating for several days at a time and was in and out of the emergency room for that and constant falling. FaceTime calls got shorter and shorter through the month of June as my dad was… no longer my dad.
July 2024 my dad got admitted to blessing hospital and had several other scans and lab work done and it wasn’t until one day in the first week of July that my dad‘s MRI came back “lit up”. The doctor said his MRI looked like someone who drowned and was dead for 15 minutes and came back to life. The second week of July, my dad had a spinal tap and finally got diagnosed with sporadic CJD only about a week before his passing. I went to go visit him in the hospital and stayed every night for a week to support my mom, and be there for my dad in anyway I could. I also knew that the end was coming and needed to have some closure.
I had some relief, knowing that my dad was still in there somewhere with his occasional laughs, curse words, and proud dad looks. However, my dad was very much nonverbal at this point. There was a turning point where my dad looked directly at me and asked in full sentence, “did I die?”, and I knew he was aware of the end in site, and he thought I was my grandma Kathy, and I found comfort in being whoever my dad needed me to be in that time and having the tie between my grandma, my dad, and me.
After I headed home from hospital, my dad passed away four days after I left. On July 18th, 2024. From the start of minor symptoms, my dad’s life ended within 5 months.
Creutzfeldt-Jakobs disease is the most awful disease I have ever heard of and witnessed. There’s no rhyme or reason why my dad got the disease, there’s no cure, and there’s no closure for fitting the puzzle pieces together.
I will advocate and honor my dad with every part of my soul for the rest of my life, and in hopes that we can find a cure for anyone else.
I love you dad, more than anything in the whole world ??
Forever, your “little lady”.