“I think I need to see a doctor,” she said to my dad. “Today, I messed up the active shooter drill; I forgot to lock and secure the door.” The kids that once loved her and embraced her were gone, their replacement, a set of unforgivable teenage monsters, cruel with every fiber of their being. Their response when the principal walked in saying expressing my mom’s mistake and that the room would have been at risk was, “You would have killed us!” It struck her to her core. It terrified her into an unthinkable state. It was the first sign that the mild forgetfulness was much bigger than she could have ever imagined. It was the first step for my family to join the path that millions of families had faced and millions will continue to face until there is a cure.
The First Appointment
After discussing the chain of events with my dad, the signs of what was happening was more than forgetfulness. The first step was to start with her primary care doctor, so my mom went to see her nurse practitioner (NP).
My mom decided to go alone, considering it a routine visit and an opportunity to bring up a health concern she didn’t think my dad needed to be there. When she explained to the NP she was having a lot of forgetfulness the NP began asking her some basic questions, items like “can you tell me about a current event that has taken place recently?” and “who is our current president?” My mom responded to these questions to be best of her ability. After the Q&A session, the NP asked my mom, “And have you always been this ditzy?” Flabbergast when she returned from the appointment, my mom couldn’t recall much of anything other than this statement because she was so appalled. Anger infused and limited to no recommendation obtained the search for answers halted.
During this span of rage-induced ignorance and no plan moving forward, my mom continued her life. New curriculum, a new principle that provided no support, new expectations for lesson plans and how to create them, no training on any of these items, and students that continued to take advantage of her cognitive decline. My mom’s stress level began to hit the roof and forgetfulness continued.
Fear continued to grow. My mom called the Alzheimer’s Association 24/7 helpline and spoke with a representative about her situation. After discussing her symptoms with a wonderful and kind gentleman, she asked him, “Could this just be stress?” He told her that it could stress and there is a direct correlation between the type of stress we face either short term or long term that can have a huge impact on our brain and memory. And there it was, enough justification for my mom to deny the fear, to turn away from the A-word and go back to her life. And so she continued, undiagnosed.
Finally, after some time and the cognitive decline increasing, along with the stress of work and other responsibilities, my mom was able to get an appointment with a neurologist. The doctor performed mental status testing. The doctor explained that she would need to see a trend before a diagnosis could be made. A future visit was scheduled and another until about two years after my mom started seeing the neurologist. Then, the appointment that seemed like all the others turned into the diagnosis appointment. The doctor looked at my mom and said, “You have Alzheimer’s Disease,” and from my mom’s perspective, that was it, and the doctor left the room.
Early-Onset Alzheimer’s Confirmed
As with all major diagnoses, my parents decided to get a second opinion. The neurologist obliged and connected our family with an Alzheimer’s Disease Center to meet with the director at the time.
As I stepped into the Alzheimer’s Clinic with my parents, trepidation and angst-filled me. This was the first appointment that I had been to with my parents since the process began. What we were met with was a welcoming and inviting team of staff members. What we left with was the unsettling news that changed our world: my mom had Alzheimer’s.
Tell Me Your Story
Every Alzheimer’s story diagnosis story is different. As caregiver’s the diagnosis story is the story that connects us most. It is the beginning of our journey. The life changing diagnosis that not only impacts your loved one’s life, it also impacts yours.
Tell me your story. Was it similar to my mom’s? Better? Worse? I want to hear from you.
Check out my post about how to respond when a loved one is diagnosed with Alzheimer’s.