Begin the Beguine

Mom didn’t just show up at the doctor’s office one day and get a diagnosis of Alzheimer’s.  It took years.  Family and friends chalked it up to grief after dad’s death 5 years prior, which seemed reasonable.  But two years after Dad died, her odd behaviors and forgetfulness never subsided, only grew worse.

I was living out of state when I needed to move closer to Mom.  Staying with her allowed me to see unusual behaviors, at all hours of the day, that would otherwise go undetected by a one or two-hour visit, or a half-hour phone call.

I saw that her office had become a catch-all for clutter, crap and post it notes.  She was always an extremely organized person, yet junk mail, unpaid or delinquent bills were lost in piles everywhere.  She was having difficulty with the TV remote, retrieving emails from her computer and voicemail from her cell phone, which used to never be a problem, even in “grief.” 

She’d completely space appointments even after meticulously looking at her calendar that morning.  Her hand-writing, at times, was shaky and childlike.  Her gait became more shuffled, tripping and falling more often.  Housekeeping became irrelevant.  Cooking could result in a five-alarm fire if I wasn’t present.

But what struck a chord was listening to her practice the piano.  She had started studying again 8 months prior, which, in and of itself, does not scream “dementia.”  Mom was a very accomplished pianist in her younger years, pregnant with me when she was studying Beethoven’s Sonata, Opus 13.  I studied as well so I understood effective practicing.  When a section became trouble, Mom would properly break it down slowly hands alone, then hands together, building the tempo until the passage became natural and fluid.  Again, this seemed a far cry from “questionable, demented behavior.”

The next day, however, she would stumble over the same passage with the very same mistakes.  She would repeat the process to (re)learn it, which, again, I found encouraging, but it would happen the next day, and the next day after that.  She made no progress in her studies because everything was lost after 24 hours.

Once I settled in my own home, the phone calls started coming in from Mom’s closest friends voicing their “grave concern for her forgetfulness.”  They had no idea what else lay behind the velvet curtain.  Thinking I had their support, I’d talk about what I saw and experienced, but ultimately their support was relatively short-lived, for reasons unknown; denial perhaps, grief to see their friend failing, I don't know.  Family didn’t get it either – they remained stoic and pretty much in denial that Mom was “just fine.”

No one ever got in the FACE of it enough to really know.  The consensus was I was over-reactive, difficult, or embellishing.  No one wanted to hear what I saw or help me try and figure out how to handle what I was seeing.  I was on my own.  There is nothing worse than doubting myself because others doubted ME.

I remember feeling as if the room was beginning to darken.  I remember feeling as if the doors and windows were beginning to close in on me.  I was doubting my own judgment, my perspective and even my sanity.  I remember feeling angry, embarrassed, sad and resentful.  I hated knowing the truth but I could not deny what was happening right before my eyes.  Truth didn’t give a crap what I felt or thought about it – I had to buck up or buck out, which made me feel even more alone and pissed off.

For the next year I refereed Mom’s life.  I secretly paid bills, photo-copied her calendar for myself so she followed through with appointments, monitored her bank accounts, kept up her credit score and cleaned the house.  I did this as quietly and secretly as possible to not disrespect her autonomy or dignity.  That kind of “sneaking around” took its toll, as did the lack of being believed and supported.  So, at times, I was a complete bitch, tyrannical even.  Then I would become embarrassed by my behavior and would isolate myself from the world.  I would literally just put my head down and take care of business as needed.

What Is True For Me  

This was a dark time …and the dance was just beginning.  I took notes and dated them to see patterns of decline, or refer to them to assuage the doubts that crept in as to what was happening to Mom. 

For the first year, my notes came in handy for doctors, insurance agents, attorneys and the like.  Then, fortunately, after the first year of my living locally and

taking notes, she was diagnosed.  I kept up taking notes a total of 4 years, including the year after Mom moved into Assisted Living.  I needed these references as much as I needed air, because accepting the truth of what was happening to Mom, and being honest about it, would be the only thing to keep mom safe and keep me from veering off into the ditch of denial.