July 14
 
 

There is a scale to measure dementia.  The top end is 23.  I guess that means a person is fairly able to go about their day to day business like anyone else, except, of course, that someone is worried enough about them to drag them to a doctor's office to have their dementia levels tested, which likely wouldn't be the case with you or I.  With every point taken away, it's a different little piece of your loved one's personality dissapearing before your eyes.  At the top end of the scale, you might not notice.  You'd chalk it up to old age or lack of sleep or a lingering cold, but dementia?  Last thing anyone would think to blame.

We first took Angelo to the Adler Center for Geriatric Assessment about 4 months after he got out of rehab, probably about 8 or 9 months after his brain surgery.  We were assigned a case worker, and Angelo was given a doctor.  Our case worker took history from us, what had happened, what we'd noticed going on with him, how he'd been since and before surgery and why we'd brought him in.  Anyhow, to make a long story short, 8 months after his surgery, he was a 19 on the scale.  Not perfect by far, subtle changes were definitely noticed by everyone who spent time with him.

Six months ago, we brought him back to Adler.  We weren't told that they were assessing him on this dementia scale, because really, it never came up.  He was more or less holding his own.  He tested at a 16.

Monday was another 6 month followup, and the last 6 months have been hard.  We are quite literally watching him dissappear before our eyes.  He is having more and more difficulty walking, of forming sentences, of knowing who people are.  He hallucinates, he is becoming increasingly incontinant and from a day to day basis, he is like an entirely different person.  He will wake up in the morning, go down to the kitchen and ask my grandmother "Where is the first Eleanor? When did you get here?  Where did you sleep last night?"  He will tell her to make herself comfortable, to eat anything she likes.  When she goes out for brief periods of time, he begs her to come back before she is out the door.  When she returns 30 minutes later, he accuses her of being gone for days.  When I call them on the phone, he can not hear me, no matter how loudly I shout.  Often, I simply hang up on him, knowing it's futile to even try.

At my cousin Megan's wedding last month, he had no idea who she was.  He didn't know my Aunt.  He didn't know my other cousin, Susan.  He, of course, was pleased by the attention of two pretty girls, but that was it.

Monday at the followup, Diane the caseworker came in after taking notes about the previous 6 months.  She shook her head sadly at the new ways he is failing.  My grandmother sighed deeply at one point.  She clutched the bag in her lap.  She looked down at her hands and said "I am afraid that I will walk into the room, and he'll be dead"  I stare at her, blinking back her tears and know that later, when I replay the conversation in my head, I will not be able to blink them back, no matter how hard I try.  I will never forget the moment the doctor walked in and tells us that now, he is a 10.  What does an 8 mean?  What happens when he's 6?  2?  What will I do when the time comes when he no longer knows who I am?  When his eyes don't light up when I walk into the house?  When he can't stand to meet me?  When he doesn't grin when I fling my arm around his frail shoulders and tell him that I love him?

There are decisions to be made, sooner rather than later.  I've realized that my grandmother won't--can't make them.  I wouldn't be able to either.  We never came up with a plan B.

Every night before I go to bed, despite the fact that I believe in no particular god over any other god because I have very complicated feelings towards religion, I say the exact same words, addressed to a vague concept.  I figure that maybe some god will listen and pass along the call:

Dear God:  Please watch over my grandmother and grandfather.  Make sure they're okay, and if they're not okay, please don't let them hurt.  Please watch over my mother, Nick, everyone I love and keep the world safe.

I hope it helps.
 
 

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