We're Back

Our vacation was wonderful, not at all how we had planned it, but wonderful just the same.  It seems to be the way things are lately.  Nothing goes as planned, but I'm learning that it's okay.  Life is nothing if not a series of changes right?

I was coming into the hallway as my son was coming out of his room and for a brief moment I didn't recognize him.  He's as tall as I am.

Change.

Within all that change we gently acquiesce to the daily rhythms of our lives.  Doctors appointments, chores, menu planning etc.  It's all good.

Aggression

Dementia is rife with aggression.  She's been mad all day.  Innocent questions are actually gauntlets thrown willy nilly.  "Did you like the new doctor?"  Me:  "Yes, I thought he was patient and a good listener.  I'm excited for you."  "Well, I thought he looked like the janitor!"  (and she stomps away)

Misunderstandings turn into an hour long dissertation on how no one understands her, her needs.

A discussion about a something impersonal becomes her cause.

Good grief!  Shoot me now!

I'm so close to going on vacation but it. just. doesn't. come. quick. enough!

How do you reason with crazy?  Is that politically incorrect?  To call someone with dementia crazy?

Because I could think of a few choice words but really none are any better.

Crack

There are times when it feels like if I breath, everything will fall. Something inside me will crack open with the intensity of a 9.5 earthquake and everything and everyone I know will fall through that crack and I'll never see them again.

Even when I try to give myself a break, as I did this past Friday, I feel the creaking, the bending and I quickly hold my breath...hold it, hold it, hold it!

Friday night a dear friend invited me to go see a play.  She paid, she drove...how could I say no?  Sergio took the kids to dance and I got ready for a night of culture in a L.A.  It was a really great evening.  The GPS took us through the worst of L.A....skid row, although I have no idea if it's still called that.  There among all the tents and the homeless I uttered my first prayer in a long time.  A prayer of gratitude, of "there but by the grace of God."  I noticed a buzz or busyness in this area and I noticed there were no problems.  My girlfriend was a little freaked out and apologized for driving through "this part of town."  I honestly didn't mind, I'm a witness now.  I don't look away from things that are uncomfortable or unpleasant...but somehow this was neither for me.

We arrived at the theatre early and had time to walk across the street to my favorite bookstore, The Last Bookstore.  We browsed a bit and then had a glass of wine before heading to watch the play.

The play was beautiful and sad.  It was presented by the Kulunka Theatre Company.  The company was created in The Basque Country, Spain, in 2010.  Three actors wearing exaggerated masks played out the story of Andre and Dorine in silence.  Andre and Dorine and their adult son are dealing with the effects of aging, dementia, memories and death.  Right up my alley.

There are several moments the were pivotal for me.  Dorine's son comes to visit and points out that her sweater is buttoned all wrong.  She shrugs it off as a mistake...she was rushing.  (CREAK)

Andre takes Dorine to the doctors office and she asks him to sit down in an empty chair, three times in a row.  He finally gets angry and sits down just so she'll be quiet!  (CRRREEEAK)

Dorine goes to the restroom and comes out with her panties around her ankles.  When Andre goes to help her pull them up, he realizes she's all wet.  He dries her up, and mops up the bathroom.  (CRAAACK!)

It took holding my breath until I just about turned blue not to sob through the whole thing.  It was sad but it was also funny.  What I wanted was to scream YES!!  YES!!  It's just LIKE THAT!  I felt I walked away with some sort of acknowledgment, a confirmation, an affirmation that this life does exist.  The sobbing I feared was not because I was sad it's was because I was relieved.  I couldn't let go and sob because I was afraid I would never stop.  It would open the flood gates to the exhaustion I've been keeping at bay.

The day it finally happens and it will, I'm not naive enough to believe it won't, the day it happens I will cry for days and sleeps for years.

You Can't Win Them All

It's no secret why we're here.  At least it's no secret to me.  My parents are wrapping up their lives.  From my point of view, they've had great lives.  Great in the sense that they lifted themselves up and out of poverty, great in that they were adventurous and took risks.  Their lives have been great in that they built and amassed a fortune (to them and to many).  Great that they raised two wonderful daughters, have lived to spend time with their grandchildren.  Great that well into their 80's they've been relatively healthy.  Their point of view may differ.  I'm sure they feel there have been some great moments, some terrifying moment, some boring moments and some terribly sad moments.  Such is most people's lives.  You take the good with the bad and in the end it's a matter of attitude.

Still it makes us all a little sad to see the "aging" part of the moment.  The aches and pains, the limitations, the screaming, not because you're angry but because daddy is hard of hearing.  It makes me sad to repeat myself over and over because mom forgot what I just. told. her. (Deep Breath)

These days my mom has been "in a mood."  This means she usually wakes up angry.  Angry about what no one knows...including her.  She heads to the kitchen to make dinner (Because I CAN still cook, you know!)  But she get frustrated.  Things aren't where she can find them.  She blames me for moving things around.  (The truth is that nothing has "a place" in her kitchen.  You want a spatula, you have to search in every drawer and even then sometimes you'll find it with the pots and pans.)  She slightly burns the beans.  She gets angry and says, "It's no wonder I burned them I'm in such a rush."  Sometimes I forget to let things go so I ask, "Rush?  Why are you in a rush?  It's 10:00 am"  She shoots me a look that lets me know I've crossed a line.  I've called her out.  See, she doesn't know why she's in a rush, but she anxious and she's cooking and I'm not helping by pointing out how insane this all is.  So I say as kindly as I can, "Why don't I get out of your way and let you work.  It smells delicious, Call me if you need anything."

Sometimes her anxiety goes away as quickly as it comes.  Sometimes it lasts for days at a time.  The litany is extensive:

Her house is overrun with children.
The cat is black and she doesn't like black cats.
I cook really weird things
We're all trying to drive her crazy
My sister doesn't feed her family.  They are starving.
I don't love her or my kids don't love her or my dad or my sister or her brother or whoever!
My dad is purposely trying to drive her crazy
He's hiding something from her
Someone always has to shit in the "clean" bathroom
I'm trying to keep the Mercedes for myself
My kids will grow up savages because they don't go to school

On a good day however:

She loves the laughter of children
The cat is so affectionate
I'm a good cook
We're all so patient with her
My sister is a good mother and wife
She lucky to be so loved
My father is a saint
My father has always been so generous with her
She insists that I take the car
My kids are so well mannered

but you know what...

Someone always shits in the "clean' bathroom.

You can't win them all.

When it's Good, It's Really Good

There is joy here.  There is history and love and compassion.  There are things that trump the boredom and repetition.  There are memories here, good ones.  There is happiness.  I have to focus on that with laser like precision because it's in the moments and the moments are sometimes fleeting.  Look for joy, it's there.  It's always just waiting to be noticed.

Authentic

Sometimes you just have to say things and let the chips fall where they may. People in my family don't seem at all familiar with this concept.  There's a lot of hemming and hawing and no one wants to offend the sensibilities of anyone else.  Things are done evenly, equally, even if you get something you don't need or even want.  You better be grateful however, you wouldn't want to hurt anyone's feelings.

So much time wasted, so much left unsaid.  It feels like no one really knows each other, not even after 50+ years.  Then there's me...the troublemaker.  Everyone knows exactly where I stand, how I feel, what I like, dislike.  Everyone know when they've crossed a line with me.  I think it easier.  They think I'm difficult.  It makes them uncomfortable.  They want me to commiserate about my husband, my marriage, my kids, my parents, my siblings.  When I don't I'm snooty, think too highly of myself.  They ask question but don't care to hear the answer because it's not what they want to hear.  It's exhausting!

I'm not fair.  Sometimes I give one child more time, more attention.  Sometimes I'm selfish, taking time for me.  Sometimes I'm quiet.  That's when everyone panics.  Constant chatter is the common comfort zone in these parts.  It's comfortable as long as it's inconsequential.  Nothing too deep.  Nothing too out of the common acceptance of things.

But when the shit hits the fan, I'm the one they can count on.  They count on me to call it like it is, to solve the problem, to take care of it.  I'm the face that says, "Oh no, that's not going to work."  "No, that's not how it's going to get done."  I won't say yes and then grumble.  I won't say yes and then flake out.  I won't say yes and then hate you for asking.  I'll just say no.  So when someone needs to say No, it's me they look to and as long as I'm not saying no to them, everyone is happy.

It's not you, it's me

We're coming up on two years since we moved in with my parents.  My mom was starting to show signs of dementia.  She was becoming forgetful, she repeated herself frequently, she became angry, she blamed my dad for purposely trying to drive her crazy.  He called, we came.  Simple enough.  Only it hasn't been, only it isn't.

Going back four years, that's when the planning began.  Turning a family home of 30 years when two mature adults live on their own into a home for a family of six is no easy feat.  On my parents part, they spent the better part of almost six month "under construction."  The added a master bedroom and bath to their three bedroom, two bath home to make room for us.  The three original bedrooms were all being used and the two of them single-handedly emptied them out and moved into the new master bedroom.  This could not have been easy for them.  My mom, whose humble beginnings included living in extreme poverty has issues throwing things out and although the master bedroom is nice and big, it just could not possibly accommodate everything that was in the three bedrooms.  My mother is brave and stubborn and stoic and she threw things out.  She threw out lots of things...but when we arrived the rooms weren't quite ready.

I felt almost as if she had done her very best and now we had to make due with the rooms as they were.  "It's just a few things in the closets, there's still room for your things" she'd say. Unfortunately, I did not want to make due.  I wanted the rooms empty, completely empty.  Not a pillow, not a hanger, not a dust bunny was left when I finished clearing them out.  That was the first of many screaming matches she and I engaged in.

She felt I was ungrateful.  I felt she was ungrateful.  She felt I didn't understand how terribly difficult this transition was for her.  I felt she didn't understand the enormity of selling everything and uprooting my family nine hundred miles because they want to die at home.  (Not, that they are close to death mind you, not at all.)  We are both right inasmuch as we have a right to our feelings of loss and fearful of the future and what it holds for all of us.  We all have had to drastically change our lifestyles, we've had to adjust.  We're still adjusting.  We've had to learn to be more patient, learn to walk away from a fight, we've had to learn to listen, not just to the words but to the feelings that back the inadequate words.  Sigh...not simple at all.