TheBanyanTree: Helen's daughter

[sash]

An open letter to my mother's best friend.

Greetings Joy!

What a treat to read the letter you sent to Kate.  Sorry dad and I fell
off the radar.  Just rambling folks, I guess.  Here are the current
addresses.

I'm glad that you and Chuck are doing so well, and it's great to hear
about the grandkids.  We're doing fine.  See Ned's picture attached.  Hard
to believe, eh?

You asked about mom - how she was and what it's like.  Well, most people
get an easy to swallow dose of sad-but-coping.  You were always the
reality check in mom's life, so I feel like you would want more.  You
deserve more.

Mom's physical health is good.  On that point, you wouldn't believe it! 
She's a tiny little thing.  Shorter than she was, but also skinny.  After
all her struggles with food and diet, NOW she's thin.  She walks
constantly.  Still an insomniac - that part of her personality remains -
so she wanders at night as well.  One of my clearest images of her?  Hot
summer night with the lights off, windows and front door open, sitting on
one towel with another one over her stomach.  She has a damp washcloth on
her head, a glass of ice with a Tab beside her, and a half eaten orange in
her hand.  The only illumination comes from the flickering black and white
tones of an old murder mystery on TBS.  The mute button on her remote
control is shiny and words buffed off from diligent silencing of each
late-night commercial.  That was the best part about having a remote. 
What a great invention.  And how would she have survived without Nick and
Nora and reruns of Ellery Queen?

TV holds no appeal for her now.

It's like trying to get an infant or a dog to watch.  How do they know
it's not real when we, with full thinking and perception, get so sucked
in?

She will still carry around food.

And a book.

She hasn't been able to read for years - her focus is much shorter than a
sentence and a plot?  Well - let's say even a board book would be
overdoing it.  There is something about the weight and feel of a nice
hardbound books though.  She "borrows" books from the 'library' at her
care center.  She also picks up other peoples glasses, parts of the table
decorations, and random articles of clothing or jewelry.  At our review
meetings, the staff tries to discrete talk around that issue saying that
mother is "a shopper" or "a collector".  So we shock them a bit by saying
"Yeah, she's a kleptomaniac, but it's not like she's headed off to the
pawn shop."  (I guess being realistic is not a common trait amongst the
family members.)  Heck, she's spent her whole life in a house FULL of
stuff - all of it hers to touch and itemize and sort.  Now she's supposed
to remember what belongs to her??  She doesn't even know that I belong to
her. If that's the worst they get from her.  OK - it's not the worst, but
really - all the more reason not to be upset about it.

I do miss seeing you, Joy.  I was always grateful for the realism you
brought into our lives - which could be pretty surreal.  As a kid, there
was something a little scary about you.  You seemed so powerful and
competent.  But it did give me some stability to know that at least one
person in the world saw through my mom's issues and smokescreens.  It
wasn't until I was older that I realized that seeing through all that and
still loving and honoring her took amazing compassion.  I have a very good
friend who can seem harsh and powerful sometimes but her heart is
enormous.  She has run many non-profit groups, has a wicked sense of
humor, and is always pushing me to be more.  She really does remind me of
you.  I'm glad she's here - for me and for my family.

So back to mom.  The physical piece is pretty stable.  Diabetes - under
control.  Blood pressure - under control.  Cholestrol, acid reflux,
depression, hemorrhoids, dry skin, mood swings.... everything is under
control.  Well - aside from the disease that is coating her brain with
plaque, of course.  My quess is that she will still live to be 100 and the
damn plaque will have to work its way through her other organs.  Hard to
believe with HER medical history that she will probably die of
Alzheimers.  Ironic doesn't even cut it.

Well - that's the 'how is she' part of your question.  As for "what is it
like?"

Is it a total cop-out to say "hard to explain"?  Alrighty then.

Does she know me?  Not for years.
Does she know anyone?  Maybe.  Sometimes.  Fleetingly.

She doesn't really say anything - just a sustained, hissing "Yessssss"
that brings to mind Tolkien's Golem.  In moments of agitation there is a
long "nooo" with fierce head shaking and a glint in the eye that you would
recognize in a heartbeat.  That's the moment I remember the mom of my
childhood - the verbal swordswoman with a piercing glare and lightening
tongue.

Even with that limited vocabulary, she will sometimes 'speak' to us.  A
hand on my cheek.  Drawing her finger down my nose as she twists her mouth
to the side in a grin.  She doesn't SAY "Doot, doot, doot" but I hear it
in my mind.  Or a conspiratorial forehead leaned in to touch against mine
as we share a joke that neither one of us heard.  Too bad, that.  I could
use a laugh at those moments.

But those moments?  They are only a heartbeat.  A fingersnap of time and
then she's just not there.  She turns her head and taps the glass of the
aquarium - completely unaware of the tall stranger beside her.

I sit and watch her in those moments when I've been dismissed.

No.  Not dismissed - that is an action verb.  And not forgotten - because
I wasn't really there to begin with.  Not abandoned even.

You know, young babies have to learn that things continue to exist outside
of their field of vision.  The favorite rattle isn't just hidden under the
blanket - it has ceased to be - even if they watched you cover it up. 
That's why peek-a-boo is such a big hit.  In the early days, they really
are shocked and delighted when you show up.

So where does the toy GO when that small child hasn't learned about
permanence?  I want to know because now I AM that toy - hidden under a
towel.  An innocent victim of a "Someone Else's Problem" field.

>From that nowhere space, I can watch her - stare openly at her.  It's an
alarming thing, to observe that way without impacting that which is
observed.  Even babies and animals play to their audience, but not mom. 
She is not impacted by my presence as I stare directly and openly at her.

Perhaps if Schroedinger's cat had suffered Alzheimers...

Watching her, I'm glad to see more contentment, moments of happiness, or
surprise.  I look for traces of my mother.  Her face is there - you would
recognize her - but that face is in a relaxed state that I have never
seen.

Well - maybe once.

I was in high school, so early 1980's.  She had been having problems with
nosebleeds - do you remember?  High blood pressure, dry weather...who
knows.  They were really bad and one night we took her to the emergency
room.  I think it was during the summer, or perhaps during Christmas
break, because I remember Kate being home.  Anyway, they decided to
cauterize the wound.  They gave her some valium to relax her a bit.  
Ridiculously optimistic of them, since the pharmaeutical cocktail coursing
through her veins at any given time wouldn't even hiccup with the addition
of something as innocuous as "mother's-little-helper".  To anaesthetize
the site, however, they used cocaine.

Kate and I were a little boggled by that.  Cocaine was just coming into
its own at the time and was the fancy-schmancy drug of the rich and
decadent.  No hippy deadbeat aura was attached to it like pot or LSD.  It
did not yet claim strung out junkies like heroin.  That would come later. 
Cocaine!  At our local ER?  Who would have thunk it?

>From a medical standpoint, it completely numbed the injury site, it
relaxed the patient, had minimal systemic side effects, and the 'high' was
short lived.  The perfect anaesthetic for the job.

So Kate and I watched our mother become cheerful.  She was charming and
clever, although a little slurred, and her face was relaxed and calm. 
This wasn't just the "good and clever patient" persona that we knew so
well from the hours, days, and weeks of our lives spend in the hands of
medical professionals.  This was a kinder, gentler, cooler, mother we'd
never seen before, prompting my sister to wonder what it would be like if
we could just keep mother stoned all the time.  Maybe some brownies?  Some
homemade rye bread?

Or maybe I'm just placing Kate there because I am remembering so vividly
telling her about it.  Many times I was alone, standing in the emergency
room with mom.  When I was the patient, Dad would come along but most the
time I was the driver, purse holder, and presenter of insurance cards. 
Dad had to get his sleep so he could get to work in the morning.  I can
remember laughing with Kate about the cocaine, but that would have been
later - not right there in the ER.  Hmmm.  Ah well - it's not like I can
ask mom.

I do know that YOU weren't there that night, Joy, but you saw my mother in
a different light.  You saw her at committees and meetings.  You saw her
in her strength as an organizer and an intellectual.  Maybe she was
charming and calm and cheerful with you?  I saw her in her strength in
other ways much less condusive to a relaxed and peaceful demeanor.  So
picture the most relaxed and mellow version of mother that you can summon
up.  Give her a couple of Vodka Gimlets (still one of my favorite drinks
as well).  Now take that face and place it on the body of a teletubby. 
The purple one, I think.

I know you can picture them.  Your grandkids might have missed them in
their glory days, but Jerry Falwell brought them to the front page.  Well
- mom wears these special outfits.  Basically, rompers.  They have long
sleeves to help her stay warm and they zip up the back to help her stay
dressed.  They are comfy, practical, and the caregivers love them.  When 
you put them on a little frame, however, a frame that still carries some
excess folds from the significant weight loss...  Instant teletubby.

With my mom's face.

If my mom had been painted as an aging cherub by Rafael Sanzio.

Not an easy image to conjure up.  A pixie doll with an ugly painting
stored in the attic somewhere.  If only botox could relax your face so
well.

Watching her walk around, she seems to be contented enough.  She doesn't
show any pain or distress.  From time to time she will have a moment of
disapproval at someone that walks by, or if someone tries to take
something from her.

That state of contented comfort is so alien to the mother I remember that
I really have to focus on the person who is standing before me.  The Helen
that you and I remember isn't here.  If she were, she would be horrified
and it's certainly easy to move into horror on her behalf.  Heaven knows
that we have all moved in and out of that place of horror during this long
path with mom.  But if I stay there - in loss and horror and grief, I
really miss something.  I miss the only grace that this disease has
offered us.

Helen isn't here anymore.  She has somehow joined me under the towel -
just past the field of consciousness.  But the disease that has taken her
from us has also spared her knowing that she is gone.  As much as I miss
my mother sometimes, it is a blessing.  It makes the visits and the entire
concept of this disease almost bearable.  Almost - but not quite.

But this woman that stands here is still family.  I see it when she
touches my cheek or when she says "Nooooo" to the resident cat.  Mom
always hated cats.  I can look at her as she picks up a book, waves at a
balloon, or tastes the edge of a silk flower and I see Ned's smile as it
was when he was an infant.

The progress of the disease is unpredictable.  We have no idea how long
she will be here, how long she will be in this phase, or even what comes
next.  I miss my mother.  I will miss this other person too, when she is
gone.  I try to remember her the way she way:  Smart, confident,
obsessive, undisciplined, creative, excessive, crazy, committed.  Your
letter was a special gift because it reminded me that I don't carry those
memories alone.  You knew her - neuroses and all - and loved her.  I'm
very grateful for that.

So - I'm guessing you may never write again.  That was probably WAY more
information than you wanted.  Then again, you never turned away from the
reality.  I can't picture you starting now.  Next time I visit mom, I will
tell her about your letter.  Maybe your name will trigger a moment - one
neuron hitting another neuron and finding a plaque-free receptor.

It sure did for me.

All my love,

SarahAnne
(Helen's daughter)