We waited with great anticipation for August 17, the day when we would FINALLY have some definitive answers.  The neurologist had stated Flo didn't have a classic Alzheimer's - she was too insightful and sharp in certain areas.  It wasn't consistent with the level of degeneration he was seeing in her short-term memory.  As a family, this is what has made this journey so confusing.  It was a relief that a professional finally saw this.  He prescribed an MRI and EEG, saying that these procedures surely would give us a diagnosis. 

Sounds easy enough - unless you're familiar with Flo's disdain for going to ANY doctor.  If you've experienced Flo in such settings, the neurologist's words would immediately set your teeth on edge and send chills up your spine.  Oh, the stories we could tell!  In one breath, Flo will tell you she hates doctors and doesn't need to go, and in the next she'll indignantly insist she goes regularly, every six months in fact!  She makes this claim for the dentist, too.  Ummmm, not true.  But I digress.

In truth, the EEG and MRI could not have gone more smoothly.  Even if they hadn't, it would've been worth every second just to get the answers that have seemed just out of reach. Something to hang our hats on.  That yearned for "ah-ha" moment we've all been craving that would explain some of the craziness and give us that SOMETHING to cling to when our sanity is hanging by a thread. 

But no.  That didn't happen.  In fact, if I could turn back time and undo this whole thing, I might be tempted to.  But that's my negativity creeping in.  It was still worth it, because now we know for sure there is no brain tumor.  There is no hydrocephalus.  There is no vascular dementia.  There is also no evidence of Alzheimer's.  Not yet, anyway, the neurologist explains ever so casually.  Maybe it'll develop into that.

Develop into that???  Does that mean this is the BEGINNING of the journey?!  I feel shock set in and it begins to numb me, head to toe in a slow progression.  There is a simultaneous roaring in my ears that drowns out whatever the doctor says after that.  I see his lips moving but all I hear is a loud, helicopter-like whirring in my head. It's not that I want to be at the end.  Not at all.  I just can't imagine that this is the beginning - that this is only the START of something.  That there is no light at the end of the tunnel.  That we have no idea what happens next.

Rather than narrow the field for us, the neurologist oh-so-casually (in my imagination he stifles a yawn, sneaks a glance at his watch, and thinks about whatever he's doing for lunch) opens it up wide as the sky. The vaguest diagnosis allowable in medical science, I'm sure.  "Neurodegenerative disorder, not otherwise specified." 

Turns out, the term "Flozheimer's" that one of our family members endearingly and humorously coined in an attempt to put a name to our journey is spot-on.  The neurologist explains that the bulk of the symptoms we are dealing with --obsessions, compulsions, repetitiveness, fearfulness, anxiety, depression, trouble with boundaries, defiance--is simply put, full-on Flomama minus the filters. FOFMTF, if that's too much of a mouthful.  Her short-term memory loss makes it impossible for her to monitor or edit her own behavior.  No mask, no filter, no moment where she considers something in her mind before blurting it out.

Now having figured out we are here to get HER test results, not mine as I've misled--I mean, compassionately deceived--her to believe, Flo becomes defiant, insisting nothing is wrong with her and she will NOT take medication.  The neurologist shrugs his shoulders and agrees, on one condition:  that she remember three words:  dog, house, and . . . and . . .  Hoooo boy.  What was the third thing . . . LAMP.  Was it lamp?!  Or ball???  (As I'm typing this, I wipe sweat from my brow as my heart thuds loudly in my chest, wondering what my future holds.)  Yes, let's go with BALL.  That's it!  Because a DOG lives in a HOUSE and plays with a BALL.  YES!  Dog, house, ball.

He has her repeat the three words to him several times to make sure she's got it, and she rolls her eyes at him like he's crazy, insisting of COURSE she will remember them 5 minutes, then 4 minutes, then 3 minutes, then 2 minutes, and then 1 minute later.  We repeat the test that many times, and each time she can't even remember the conversation.  

After the tests, the neurologist adds a new word to the mix.  I think he sees the desperation on my face and knows I need SOMETHING more.  Maybe if he can throw out one more word, this strange redheaded woman with the crazy look in her eyes will relent and leave his office.  "Amnestic" he says, and I pray that Wendy and Ashley, listening in and offering support via speaker phone, are scribbling this down so we can all google it later.  Ummm, NOT that I won't remember or anything . . . But, I digress again!  As he explains, I think of the movie "Fifty First Dates."  Except, there's nothing cute, fun, romantic, or funny about this.

Having dropped this final word, the doctor seems satisfied he's done his job and appears ready to bolt.  I, on the other hand, am NOT ready or satisfied.  I struggle to conjure up a fancy medical word that will mask my desperation and answer the questions burning in my mind:  What happens from here?  What does the future hold?  How long do we have?  Prognosis.  That's it.  That's the fancy word that neatly summarizes all of what has consumed my thoughts for months and months.  Prognosis. 

Prognosis.  Three syllables.  In a flash, I think to myself that a word that holds such power over a situation should have more syllables, or be hyphenated, or something.  Just so that the importance of the matter is impressed upon the listener.  But (at least for now) I do have a filter, and I use it.  Instead of blurting out what I'm really thinking, I collect myself, and in the most sophisticated tone possible ask the doctor for a prognosis.

I'm not even sure why I ask. If this man takes an existing diagnosis and makes it broader instead of narrower, he is certainly not going to pull out a crystal ball now and pinpoint a timeline for this journey.  Even knowing this, I think a part of me is hoping there's something I've missed, something this trained MD will know that I don't.  Instead, the theme of disappointment continues, and I see the shoulders rise and fall again, with words that I'm sure convey the equivalent.  

The doctor says maybe in another six months we'll know more.  Six months.  I remind myself that this man seems to be under the impression that this is the beginning.  He apparently didn't review in his notes how long we've all been doing this already.  So to him, that must sound reasonable, even worthy of a shoulder shrug.  As for me, I feel a wave of snark set in, and I'm tempted to offer a mini-mental status exam to him to test HIS memory.  That thing about the filter again.  Yes, I have one.  For now, I will use it.

He prescribes Zoloft, which has worked in the past for her OCD, and also tacks on trazodone to help with sleep.  Later that night, as I recount the visit and my concurring disappointment for the hundredth time to Ryan, he observes that she hasn't spoken about our dad lately.  Not that this is a good thing, per se, but typically her reminiscing about my dad coincides with severe depressive episodes.  So, in that sense, it is positive. 

Yes, I remind myself, she hasn't been as depressed lately.  She seems happy.  She seems content.  She laughs often.  She is well-dressed, well-groomed, well-fed, well-loved, and well-cared for. 

And for now, that is enough. 
























  


 

Her short-term memory, he explains, cannot get any worse.  After many diagnostic tests, he proves she is unable to recall short-term information past one minute.