THE GIRL THAT SITS WITH ME

Across the room my mom lies still, staring at the ceiling.  She’s counting tiles.  How many times has she counted them?  She’s lived in this room for 30 years.  But now she is bedridden and her mind, as she herself once said, “has gone somewhere else and left me behind!”  

“14.” She says.  

“14?” I join in as I put the food down next to her.

She nods.  “And seven across,” I add.

She counts the parallel squares above her.

“Yes!” She says.  And we fall into silence, looking at each other.  

I smile.  A big broad goofy smile.  My personal crutch to mask what’s really going on inside.

“So many teeth!” She exclaims.

“Yes, 28, full set!” I reply.

We’ve had this conversation before.  I know it well.  Mom is fascinated by teeth.  She’s been without hers for so many years.  She had dentures once, that she only wore when other people would be looking at her, but that she would take out, wrap in a napkin and tuck away in her purse before eating.  Gums of steel after all these years.  But nowadays she misses them.  Something real and yearning under the simple statement.

She mischievously mocks my smile spreading her empty gaping mouth wide.

I generate a laugh.  We both make laughing sounds.

The familiar routine comforts me.  As her memory, and our joint memories drift away, I have found the need to feel close through these repetitive interactions.  It’s something…

“Is your mother still alive?” My mom asks out of the blue.

Stunned I don’t know if she’s joking, being literal, or probing some deeper spiritual meaning to what’s happening?  Is she still alive?

I take the lighter choice… “Yes, I’m having brunch with her right now!”  

She looks at me confused.  My insides start to turn.  Wait.  Is she really asking that?

Her eyes look at me.   But they don’t seem to see me.  Mom.  Mom?

She stares at me hard.  I encourage her to eat another bite, lifting a fork full of food to her mouth.

“I don’t want it,” she barks at me.  “Why are you pushing that on me?”

What????  I’m… not.  I think…

“You don’t have to eat it,” I manage to get out. 

The room goes quiet.  Mom gazes back up at the ceiling, “Cosmopolitan…” she announces reading some word she see’s written in the light reflections.  “Do you see it?”

The room feels heavy.  I drift out, out of the room, out of my body… out of my mind. 

Days pass.  Mom refuses to take her medication. 

“I don’t want them!”

“Mom,” I continue to use the word, forgetfully or hopefully, but she stares back at me blankly.

“Mom, you’ve been taking these medications every day for many many years.”

“I don’t know what they are!”

“They are to regulate your thyroid, to help you sleep, to calm your restless legs.”

She eyes me skeptically.  And with her eyes narrowed shakes her head slowly but determinedly NO.

Does she know something I don’t?  Maybe she doesn’t need these.  My mom has been on some sort of medication all of my life.  Anti-depressants, anti-anxiety, anti-anger.   Maybe she wants to feel everything?  Or maybe because of her dementia she really doesn’t know these medications help her.

Mom manages to sleep.  Then stares.  Then sleeps.  Then is wide awake for days.

I don’t know what to do.  So I just sit.  I actively sit.  No scrolling.  No texting.  No watching.  Present.  All my energy is here.  Can you feel me mom??  I’m right here..  do you know?  

Normally I’m a doer.  I do things.  And anything is better than nothing.  As long I’m doing.  Cause not doing is unproductive, lazy, unacceptable.  Always doing.  That’s a win.  But today, I choose to Not Do.  Today I choose to sit, staring, without activity.  Today, I am Being. 

Being in this space with my mother who no longer knows me.   Being in this room full of memories, sounds, images, items, emptiness, longing.  Being with myself.  Yikes!  This is some hard work.  This not doing.  But it feels right.  To just sit.  To be right here.  Right now.

“Are you bored here?” My mom startles me out of my thoughts.

“No!  I’m happy to be here with you.”  It comes out sounding so insincere, but it’s true.

“You look bored.”  But Mom.  I’m just being with you.  I’m Being… here….now…with you.

“You can go if you want.”  Ufff… Well I don’t want…. “What time does your shift end?” She asks blankly.

Pause.  Space.  Blink.  Breath.  She doesn’t know.   It doesn’t hurt… It doesn’t hurt… it doesn’t…

Can I just run screaming from this room? Please.

“Would you like a yogurt?” I toss out.

“Yes.”  

Distraction successful…. For both of us…

The usual sluggishness is dissipating, when I walk back in the room she’s still awake.  More than awake.  Active. 

We eat yogurts together.

“Are you married?” Her eyes inquisitive.

“No, I’m not.  I’m divorced.”

“Are you unhappy that you aren’t married anymore?”  This is a new line of curiosity.  

Hmm…  “Well yes and no.”  I give an honest answer.  

She contemplates it.  “I wish I had been with a man.”  

Oh dear.  This is really new territory…. Umm.  “You don’t think you’ve ever been with a man?”

“I haven’t.  But I would like to know what it is like.”

Her desire is real and makes my heart hurt.  I know she was unhappy in her marriage.  I know she was sexually assaulted.  Is she talking about a physical experience she never had??  Are we having a real conversation about something deep inside her, wanting a feeling she didn’t get?  Or is it that she simply just does not remember her life?

I resort to my comfort zone and make a joke… sort of… “We could order one of those sexy guys that come into the home and dance for people… Should we do that??”

She gives me a silly side look.  “No!  That’s ridiculous!”  We smirk at each other.  Would she like that??  I wonder…

Awkward silence.

Talking to my mom as if we are strangers stirs things I’ve never felt before.  What does it mean if everything you’ve known with someone is suddenly gone?  No shared memories.  No common experiences. No relationship.

“The room was so small, my bed was right up against the closet door.  And the walls green.”

Another new direction….  “Green walls?  Was this in your apartment in NY?” I pursue.

“No.”

I have no idea what she is talking about….  “Did you like the green color?”

“No.  I hated it.”

I wait for any more morsels to come out.  

I want to understand.  Each hour it seems my mom is in a different age, place or time frame. Mind going all the time.  I am drawn in.  Curious, so very curious.

She’s still refusing the medication… Does the medication help her… or me …I wonder?  There must be a toll for quieting the emotions all those years, calming the system. Perhaps other things get quieted too.  Things that the world doesn’t get to know about.  An inner numbing.  A smoothing out of the wild interesting edges.

Is this what she wants?  Maybe she likes this wild free place in her mind?  Or is she lost?  Confused? Exhausted? Alone?

I wander into mom’s room after a long walk outside feeling revived.

“Ouuuuuuuuuuuuu!!!” “Ouu Ouu Ouuuuuuuuuuu!!” Mom howls loudly at me … like a coyote.

It takes me a moment to become present with whats happening.  

“Wooof woof woof woof woof!” I join in.

“Ouuuuuuuuuu!!” 

“Woof woof woof….” “Ouuuuu!!”

I hop onto the bed next to her in the shape of a dog.  She howls some more.  I howl some more.  Then meow, wagging my butt like I had a tail.  We are communicating….  We are in the moment….  We are alive…. We are….together…

“Ouuuuuuuuuu!!” “Woof woof woof….ouuuuu!!”  For as long as it can last..

Laughter breaks out… and then subsides.  Eyes wander.  Silence.

“When will I get to go home?” She urges.

Meet her where she is.. thats what the experts say….Yes… OK….  “Where is your home?”

“I don’t know.   But I know it’s not here.”

“What does it look like?”

“I’m not sure, but I’ll know when I’m there.”

I quietly contemplate this…. Where or what is home for her?

Could it be because the furniture is not her own?  She inherited this house.  She use to say it wasn’t hers because she didn’t earn it herself.  It’s a house packed with possessions from a dozen deceased family members, furnishings from the Aunt that raised her. Is that bubbling up from some deep inner disappointment? “What a beautiful place you chose to live,” I recently had said… “I didn’t choose it,” she simply responded.

I wait for her to say anything.  Wondering what avenues she’s traveling in her mind.  It seems like there is some other light happening.  Some other stories. Some other reality.  

Am I meeting a different mom?  Are these cracks in the mind, or windows to something I never knew, that never got to be released?

She is inside… not sharing for now.  

I take comfort in the routine of changing diapers and bedding.  The bodily hygiene process doesn’t bother me.  There is something nurturing to be hands on, caring for a loved one.   It’s all I have now.

“I hope you get paid a lot?” My moms eyes big and probing spark out at me.

“Ha.  I’m not getting paid.” I lightly answer.

These lines.  These lines of lying and lovingly steering.  ‘Don’t disagree with the illusion. Go along with whatever they say, it reduces their anxiety.’ 

“Then why are you here?” Her words are harsh, challenging, feel personal. 

I can’t do it.  I’m cracking open.  

“Because I’m your daughter.  And I want to be here. I’m doing this because I love you.”

She scoffs.  “Your too old to be my daughter!”  

Ouch!  Noooooo.

Moms eyes flick towards me.  I smile.  It’s me mom.  See me.  Please.

Her eyes dart around for a moment… assessing.

“I want to call my mom.  I’m worried about my mom!  Give me the phone!!”

I hesitate….  How old is she now?  How old does she think she is?

“Your mom’s not here.”  I offer truthfully.  Trying to figure out what is the kind thing to say..  What would soothe her.

She yells. “Give me the phone!  I’m going to call her!!!”

I panic….  Against my will, honesty bursts out.

“Your mom isn’t with us anymore.  She died a long time ago.”

Shock and sadness cover my mom’s face.

“Why didn’t someone tell me!  What happened?”

Oh this is so awful.  I am not equipped to navigate this.  A flood of real emotions swirl in my moms’ face.  She seems very young, innocent… devastated…. 

I am horrified.  How do I make this right???

She rolls away from me.  I’m confusing… and hurtful.  I’m sorry Mom.  I’m so sorry.

I sit near her.  I want her to know me.  But I also want her to know I’m here.  I’m listening.  I want to do what’s right… what’s right for her… What is that?

Can I get a glimmer to shed light on where she is?  What it’s like for her right now?  What’s happening in her mind?  Are they memories from times I don’t know about, dreams, desires, illusions?  Reality feels so fallible and fragile when it can shift around in the brain from one hour to the next.  

Hours pass. I bring in a drink for her.

I sit.  Back to Being.  I’m getting practiced at this Being thing.  Here I am….  Being.  Yup. Totally Being.

We look at each other, then away from each other, then back to each other awkwardly. 

Eventually my mom rolls away from me towards the wall.  My sister comes into the room walking around to the other side of the bed where she can make eye contact with mom.

Mom leans in to her.

“Is that girl that sits with me still here?” My mom whispers.

I hear the words.  

I realize she’s talking about.. me.  

Life drains out of me.

My moms thinks my sister is her sister, though she was an only child… So many alternate realities…

Does anything really mean anything??  When the story can change so easily??  My existential reflection is wearing me down. 

I miss my mom.  Despite as hard as it could be sometimes, it’s harder to be “The girl that sits with me.”  

So many sleepless nights, waking every hour to peek in and make sure my mom is comfortable, awake, asleep….   alive…. 

With support from the hospice team mom has started taking her medication again, including something for cognitive decline and memory.

This morning I pop my head in… “Good morning,” I brightly exclaim.  

“Is it still morning?” She jokes.  A familiar joke.  She’s very tired.  The medication lethargy has returned.  Eyes heavy, not as alert as the previous amped up weeks.  But, she’s looking at me.  I think.  Seeing me.

“How are you feeling… mom?”  I tentatively drop.

“Fine…daughter,” she counters… with one of her previous playful responses.

The medicine is working.  She is back in our reality.  It seems her mind has glued back together.

I am relieved.  So so very very very relieved.  

But there is something else… I hope it’s right… right for her… I will never know.  Now we are in this time, in this place together.  We know each other.  

But do we really?  And what will I never know in all those other places, and times, and ages where only now under these circumstances did they appear?  I feel like I traveled to so many different moments in my moms life over the past month, and also maybe to her dreams?  

Or …to some places that only exist in the cracks.