First symptoms, feeling alone, and finally redemption
Let's just start at the beginning.
Oh wow. Getting back into the headspace of this time instantly brings back that all too familiar knot in my stomach. It was arguably one of, if not the hardest part of this entire journey so far.
Mom was diagnosed with early onset Alzheimer's Disease in the fall of 2014 at the young age of 61. Getting there felt like climbing the highest mountaintop without any gear. It was chaos. No one knew what to do.
No one even believed me at first.
Before I get too ahead of myself, I'll share with you how Mom's behavioral changes ended up on my radar. In 2011, due to a crippling era of depression, at 33 I moved back in with my mom and stepdad.
Packing everything I owned into a tiny Uhaul, I made the humbling journey from Orlando to NE Florida where they lived. With my head hanging low I moved things into my childhood bedroom.
I felt like a supreme failure but looking back, it was all perfectly aligned.
While it was an unfortunate reason to be with her, that time gave me the opportunity to become closer to Mom than ever before. I knew her. Well. All her idiosyncrasies and typical ways of being were etched in my mind after being with her day in and day out for over a year.
It was a time when I began to deeply know her in this way I never imagined I would. It is a period when I began to see her less like Mom and more like a fellow human being playing the role of a mom.
She also played the role of my best friend. When I shut everyone else out of my life that loved me - I remained tethered to her. She would check on me but afford me privacy, she expressed worry over my tears but knew this was my journey to navigate, and she helped me claw my way out of depression one walk at a time (that’s a story for another day).
(Mom + me, 2012)
Once steady on my feet, I moved out but still saw Mom as often as possible. It was toward the end of 2013, only a year or so later, when I noticed some of her very familiar ways of being begin to change.
I chalked it up to aging, but my intuition kept nagging me like I used to nag my mom when she told me no. Months went by and the call to address these changes only grew in my heart.
Some of the behaviors (that I now know are symptoms) which led me to worry:
Slight changes in her personality - more sadness and less Patti pizzazz
Inability to keep her famously organized *by season and holiday* linen closest actually organized
Her vocabulary started to shrink - her once robust choice of words began to fall short of the flare they once held
Notice that I didn't mention memory?
Yeah that's because Alzheimer's Disease is about WAY MORE than memory loss. Memory issues weren’t present in the very beginning.
But that time, all I knew about dementia was forgetfulness, so the neurodegenerative disease wasn’t even a suspected culprit. I didn't know what was going on with Mom, but these changes weren’t in my imagination.
So I started having side bars with my stepdad and sisters. I tried to explain what I was witnessing in Mom. I even called on my dad's counsel (they had been divorced about 15 years) because I wasn't getting anywhere with anyone else.
Everyone had an excuse or a reason to dismiss my concerns – she had just retired from being a day care director after 25 years. Some folks thought the issues were due to this major life change, and while I suspected that had something to do with it, I was positive that wasn’t all to the story.
Rejection after rejection, I was pissed. And I was sure. Sure that something was happening with Mom, but no one would really hear me and the common response was that I was worrying too much.
It was an extremely isolating time.
After countless conversations with anyone who would listen, finally others started to notice what I had. FINALLY, they believed me. Finally, we could get Mom help. I thought the hard part was over and it was smooth sailing from there!
Welp, was I wrong.
I took my concerns to the lady it mattered most…Mom. As you may have guessed, she wasn’t too keen on the idea that something was going on with her and refused help. She even grew resentful of me for a period and all I was trying to do was help my sweet mommy.
Thus began the arduous trek to the doctor’s office. A story in its own right.
Coming next week…how we got the diagnosis and the experience with her first neurologist.