Myrt 90, Me 60

  

Driving to visit my mother today, I had the usual tortuous conversation with myself. 

I wish she still lived with me. 

She wanted to be with others; she was unhappy. 

She ate more when she lived with me and I made sure she stood a few times a day. 

It was one step forward and two steps back, not the other way around.

She seems weaker.  She has lost weight.

She is 90 and in the end-stages of Alzheimer’s, of course she will become more frail.

I miss her and I wish I could care for her.

You forget how your spirit was ravaged by bearing close witness to the pernicious workings of dementia.

It’s a long drive so I force myself out of this pathetically sad self-talk and turn to an audio book for thought-rescue.   The diversion does not last long though.

I start trying to make sense of my mom’s journey from being the person who was as stoic as a rock to her new diminished form, helpless and vulnerable.  Imprinted on my heart is this woman who seemed to be able to handle any dang thing that life threw at her.  As a child and as a teen, I never saw the woman cry and I never saw her out of control, and believe me when I say that life had given her plenty reason to break down.  She never did.   Now the tears of a lifetime flow freely.  So many tears.  Is it an old, unnamed sadness which has breached her wit’s weakened walls or is it newborn sadness, swelling and spilling from some tiny comprehension of her own suspended consciousness.  In other words, is it a clear and present suffering?  I will never know. 

Just a year ago, I would have described her mind as tangled wires – like those eternally knotted up earbuds in every kid’s backpack - which a patient hand can lay straight and smooth again.  But, no amount of love, kindness and patience can unscramble what is left now.  I did not know that those tangled days were the good days.  Now … now her mind is an open window where people drift in and out like scents and she never seems to fully grasp a presence; it all wisps away.  These days, I always, always hold her hand when I visit ….

because I do not want to be that disappearing scent,

because I do not want to vanish into thin air,

because of this I do not let go of her hand.

I turned 60 yesterday and it was a wonderful day.  I felt grateful all day.  So, today I told Myrtle that I had just turned 60.  She smiled weakly, looked around the memory care unit and said with a serious certainty, “Oh, you’re older than me.” Glancing once more at the folks sitting nearby, she mumbled, “I’m still in the waiting room, I see.”  Then she closed her eyes to sleep again.

I am not sure who she thought I was or where she thinks she is today.  It didn’t really matter.  I clung tightly to her hand, wondering.  

I wondered - when I am gone from her memory, where I have lived for 60 years, what does that mean.  Is it a part of her that has vanished or is it a part of me that has vanished? 

I wondered -   if I were to leave this good earth tomorrow, how can I “live on in her heart”, if I am already no longer there?   And, if she has small memories of me cocooned in one of dementia’s locked chambers, memories which I have forgotten, aren’t they now forever gone? 

If something of me has vanished, and if in the end we are only all the little things we have left behind, maybe this is why I feel such a fathomless sense of loss. 

Without her memories of me, I am simply less.  And broken-hearted.   

She can’t seem to stay awake, so I leave.  Climbing into the car with a hot lump in my throat, and while contemplating all of these profound questions, I start routing through my backpack.  I’m starving.  I find a protein bar.  The preposterous juxtaposition of the sobering need to eat with a struggle to puzzle-out divine philosophical inquiries is not lost on me.   

I roll down the window and eat. 

The sweet scent of freshly mown grass drifts in, bearing dozens of childhood memories.  I close my eyes and drink deeply of that perfume and I swear I can hear the far away happy chatter of kids at the public pool and I can smell the cherry Kool-Aide my mother is mixing and I can feel the hot sun on my face.

Ringing the Bell, Tapping Out, Crying Uncle

Whatever you want to call it, I am throwing in the towel.

Tomorrow Myrtle is moving into a facility where we hope she can get more of the kind of support she needs and wants – where we hope she will be happier.   For many, many days I have felt like a quitter.  It goes without saying that caring for Myrtle is the single hardest thing I've ever done.  And I don't usually quit.  Until now.

Here's the thing.

Myrtle is doing well, all things considered.  In my home she has gotten much better food and nutrition. She is wheeled outside in the sunshine for a walk almost every day and often two or three times a day.  She gets more attention to hygiene matters and she has a spectacularly beautiful view from every window.  Art supplies, great picture books, and access through Netflix to all of her beloved nature documentaries.  She is hugged and she is loved.   And, you know what?   She wants to be somewhere else.   She wants to be where there are other people like her.

Every morning at breakfast she looks around and says:  "Where are all the other people?"   She is used to sitting in rooms lined with old folks sitting, chattering or napping, or scooting around in their walkers or wheelchairs.   Every day it is clear to me how lonely she is.  This is probably the single thing which I am unable to change.  I can’t fix her loneliness.

She is stronger and healthier than when she first came to my home.  True.  

Yet, all she wants is to sit in a circle with other old folks, have confusing chats, laugh at nothing in particular, complain about the food, and peacefully watch the dust settle onto the tops of chairs and the sweatered shoulders there.   

She is looking for her people, and, in a way, her humanity, threadbare though it may be.  She does not want the unique comforts and beauty of her home in Medford.  She does not really want what I have constructed.  

“Where are the people?” she asks.  

“Where are the others like me?” she wants to know, every day.  

“I want to go where all the others are,” she tells me.

I am either ringing the bell on my own foolish goals to cheat dementia of its full claim on my mother or I am simply ringing the bell on her stay here with my family, which has not been easy – not for one minute.   I’m just not sure which it is.  

I will visit her often, but I will miss her presence here.  I love you, mom.

Mickey Mouse Moments and the Wittgenstein Fix

Monday morning we were all preparing for a long drive to Broomall, PA to visit my sister and lots of extended family.  Myrtle would be coming along.  This was a stretch, for her and for the rest of us.   A bold and potentially ill-advised expedition - we were all a tad nervous.  We would leave at 11 a.m, I explained to Myrtle early in the day.  That was a mistake, because she began asking questions like:

“Will my mother be there?” 

“Why not”

“Tell them I’m coming”

“Tell my father I’ll be there”

“I see snow (it is on the TV program she’s watching).”

“Is it a very bad storm?”

“Do you have snow tires on your car?”

This was distracting but when we began to debate the time of day, I felt like I was caught up in a nonsense which threatened my own sanity. 

Myrtle wears a watch.  Always.  Compulsively, even.  I would place said watch at 30 years of age.  It is a Mickey Mouse watch.  To complete the absurd image of a 30 year old Mickey Mouse watch being worn obsessively by a 90 year old woman with severe dementia,  know that this watch has no hands.  No hands.  In many ways, it is timeless.

“What time is it?” she asks.  I look at my clock on the wall. 

9:30 a.m., I report.  

She consults Mickey. 

“Oh, no, no, no.   It’s 12!  We better leave.”

Ok, I am stumped.

“Look, look!”, she insists, pushing the hand-less Mickey toward me, so I can see for myself.

“Well?  See?  It’s 12 o’clock, not 9:30!”

It’s 9:30 a.m. mom, I state wearily.

“What?  No, no, no.  Just look!”  Again, Mickey the amputee, is thrust toward me.

Speechless in Medford.

Last night Myrtle asked if I had lost her glasses.  I ponder a bit before responding.  She had Lasik surgery some years back and she no longer wears or needs to wear glasses, but she does not remember this and never will.  She has vision in only one eye – and it is, essentially, 20/20.   I know this information will not get processed by Myrtle no matter what words I use, and I was very tired from a long day of travel (with Myrtle in tow).   So, I just tell her I will look for them tomorrow.

She does not like my answer and she scoots in her wheelchair to my 14 year old son’s desk.  Reaching the desk, she began yanking on piles of books, drawers, everything …. determined to find her eyeglasses among his odd little mountains of schoolwork, art supplies and electronic gadgets.

Time to redirect.

Mom, do you want some hot tea before bed?   I need my glasses.

Mom, can you see me?  Yeah, of course.

See, you don’t need glasses.   Get my glasses will you?

I don’t think you have glasses.   You LOST my glasses?  (incredulously)

I did not lose your glasses.   Get them for me, ok?

I don’t have glasses for you.   Where did you lose them?

It goes on like this for another 10 minutes until my husband looked up from his book and demanded that I produce some eyeglasses for her so he could read in peace.  “Can’t you just give her any pair of glasses?  Seriously, Ro, this conversation is breaking my brain.”  

He has a point.

So I found eyeglass frames.  No lenses.  Just a frame and a broken one, at that.  After putting these on her face she sighs, “Oooohhh, boy that is so much better.  NOW, I can see!  Where were they?”  After enduring half an hour of badgering over these eyeglasses, I desperately want the satisfaction of telling her that these have no lenses and that there is no way these empty frames could make any difference in the world.  I watch as she handles the eyeglasses, wrapping her fingers through the empty frames, completely unaware that there should be glass in them ‘thar frames.  My moment of satisfaction would never arrive – she will never understand that these are empty frames – no matter what I say.

Speechless in Medford, again.

Earlier this week when I was considerably confounded by the inscrutability of Myrt’s commentary, I remembered something I read a few years ago about sense vs nonsense as applied to sentences and language, generally.  It was Ludwig Wittgenstein.  I grabbed my computer and escaped briefly into Wittgenstein’s Tractatus Logico-Philosophicus.  Not a beach read.  Anyway, in order to separate sense from nonsense, he applies a whole system of philosophical grammar to language, using our familiar concept of grammar to establish the fact that meaning itself comes from the way language is used.  He marries logic and language (oh, happy day) to describe the rules of sense and nonsense.  It's such a relief to travel (if only in my mind) through orderly thinking.

Yes,  even Wittgenstein had his challenges ....I think he gave up on it all, eventually.

Nonetheless, I find this intellectual detour oddly comforting.... until I arrive at a different thought altogether.  The reason I enjoy reading Wittgenstein is because his thinking, like all philosophy, applies rules to things which aren’t as straight forward as - “How long should I boil this pasta?”    

And interactions with Myrtle have no rules whatsoever.  Social convention, the familiar shape of a conversation, the order of words in a sentence, the actual words themselves -- these all goes swiftly to hell in a handbasket.  I had a revelation  -  I am flummoxed throughout the day by what is a rule-less style of interaction and it is deeply stressful for me.  Maybe I like rules after all?

           

My sobering summary of these self-administered antidotes to nonsense:  Even as I complain about drowning in her sea of non-sequiturs, Myrtle is gradually losing her ability to speak altogether.   And when that goes, I know that I will miss the steady stream of nonsense, and I guess I will then strike out against the ocean of silence.