We first learned of CJD during our mother’s first 2 weeks at a local Hospital. It was mentioned in a letter left at her bedside for me to find. After some research I'd decided this couldnt be my mom and was too afraid to even mention it to my family.
I first told my sister and we decided to remain hopeful. It was far to horrifying to imagine this could be our mother’s fate not now not ever.
Acceptance though wouldn't come until years after her burial.
She was practically normal in the beginning having only lost the ability to operate her phone. The endless doctors were as dumbfounded as we were. I had to push for more test because " Stress" was not enough of an excuse for the sudden memory lapse. As my sister described, after multiple spinal taps, EKGS, EEGS, and vitamin drips we would be told there’s nothing left to do but wait and watch.
Nothing could have prepared me for the 9 weeks I’d witness summer of 2021. In the aftermath, I would be reminded with each therapist that this was the natural progression of life. It’s apart of the human condition to live and one day die. However, the overwhelming sadness was not just from the loss of our mother but the grief of not being able to help her. You see I was always 2 steps behind Ma, she’d call me her “Shadow”. As a child I’d sneak into her bedroom just to hold her hand so I could sleep. In our last moments together I’d do the same for her.
As the days went by , I would watch my father sink into the floor each time he’d see her unable to save the woman he’d spent a life time protecting . She would ultimately forget who we all were, first our birthdays and then our faces. I wish I could put into words the profound pain that came with that.
Our mother was a caregiver through in through. I believe that is why we were able to do what we did as hard as it was. Caring for her required total selflessness especially in the last few weeks. We had to be her guiding light when she could no longer be ours. My mother would ultimately decline to a point she could not eat, speak, move or even blink anymore. But I still felt that no matter what she knew we were there with her and that gives me peace.
We are forever thankful for the resources provided by the CJDFoundation to assist families through these difficult times. It goes without saying that we wouldn’t wish this experience on anyone.
Helping to find a cure is one final step in continuing on our mother’s legacy.